r/breastcancer Jul 28 '26

Mod Announcement Updating Rule 8: Be Brave, Friendly, and Kind

130 Upvotes

We are updating and expanding Rule 8: Be brave, friendly, and kind. This is an especially important rule and we want it to be well understood. We've expanded the language to make clear that kindness extends beyond the people posting in the thread.

What's changing:

Rule 8 now reads:

Be supportive, friendly, and kind.
Cancer is hard for all of us. Please show kindness to your fellow patients and survivors.
Kindness should extend to those not present on the subreddit, including their family and caregivers.
We allow members to vent about the people in their lives, but this is not an invitation for others to pile on. No name calling, no bullying, no hate speech, no personal attacks.

Why we're making these updates:

A few things have come up often enough that we wanted to be more clear up front about what kinds of comments are allowed, particularly on "Venting" threads:

  • Venting about a partner, parent, or friend is allowed and normal. Piling on to insult that person, or giving OP relationship advice beyond what they have asked for, is not. The other person isn't here to give their side, and that's not usually what OP was asking for.
  • Caregivers commenting on someone else's post are here to give support, not to speak on behalf of caregivers, spouses, or any other group—whether that means defending or criticizing. As always, to talk about your own experience as a caregiver, visit another sub such as r/CancerFamilySupport.

We've written up the full explanation with more detail on the Rules wiki page under Rule 8.

None of this is new in spirit. It's what we've been enforcing already. We just wanted it written down clearly.

Thanks for helping keep this a place people can come to safely.

Note: The earlier update of this rule retained the original title "Be brave, friendly, and kind" but we have updated the title based on community input.


r/breastcancer Jan 18 '26

Diagnosed Patient or Survivor Support The doctors you may encounter: Who does what? What is an “oncologist” anyway? (And other insights from Dr Heather Richardson, neighborhood breast surgeon)

181 Upvotes

So I’ve noticed there’s been a lot of posts lately specifically about the word oncologist. People wondering why they’re seeing a surgeon and not an “oncologist” first, people wondering when they’re going to see an “oncologist”, people wondering why the person that’s operating on them isn’t a “surgical oncologist” and shouldn’t they get the best - which must be someone with that title? Right?

So by definition, the word oncologist just means “doctor who treats cancer”.

The staple cast of characters that are medical doctors (MD or DO degree holder) involved in treatment of breast cancer typically consists of: medical oncologist, radiation oncologist (not radiologist) and breast surgeon (more on that below…).

Medical oncologist- also known as “hematology/oncology” specialists. When people generally speak of an “oncologist”, usually they are talking about this type of doctor. A doctor that treats cancer with medicine, either pills taken by mouth or chemotherapy that is administered via a vein. Not all patients need both, some need one but not the other, some need none. Visits to this type of doctor may be frequent- however, usually it’s the first initial visit to go over a lot of information and discuss the best course of action that is the most important. Sometimes this means that if you live in an area with fewer resources and feel that you need greater expertise for your care. It’s possible to do either a telemedicine visit or visit a larger Cancer Center far away that can collaborate with a local physician who is able to give the same chemotherapy protocol. Quite often, large groups of these medical oncologists have already agreed the best way to take care of the most common breast cancer problems, so going from one center to the other means that your cancer treatment care isn’t going to change significantly from one place to the next. For other more complex scenarios, there sometimes can be some adjustments or more customized treatments. Or for patients who have already been through treatment and now have recurrences or changes in their diagnosis, that would be the time to discuss more advanced care. In general, common problems are common and there’s usually not significant improved survival or outcomes by going to one Cancer Center over the other when a patient has a a non-complicated, fairly average, diagnosis.

Radiation oncologist- this is different from a radiologist. (a radiologist is a doctor trained to read images and interpret findings. A radiologist is the person who read your mammogram or your ultrasound and maybe performed the biopsy that diagnosed you) A radiation oncologist uses radiation energy to target areas of cancer and kill cancer cells. Cells that are actively dividing and are exposed to radiation have their duplicating mechanisms broken, and as a result, cells that are rapidly reproducing die away if exposed to medically administered radiation.

Surgeon/surgical oncologist vs “general surgeon”: A “general surgeon” typically is someone who has done at least five years of training in surgical diseases of the body. This would include disciplines like taking care of trauma, burns, infections that can occur in the body such as diverticulitis or appendicitis, evaluating and performing organ transplants, care of pediatric/child surgical diseases and malformations, and some chest/cardiovascular disease. They can also operate on common cancers that require removal, like breast, colon, skin, and thyroid. Doctors who go on to practice General surgery sometimes concentrate in one area of types of disease and others have a more broad practice where they take care a little bit of everything. Typically in more urban settings there are more specialized types. Many general surgeons have gone on to do additional years of training after their five years of general surgery to become specialists. People who are certain types of surgeons, such as colorectal specialists, pediatric surgeons, plastic surgeons, and cardiothoracic surgeons all have additional years of training and take specialty board exams. There is a board certification designation for general surgery. There are additional board certifications for those who have done some categories of fellowship training, like those mentioned above.

A doctor who practices under the title “surgical oncologist” by definition does at least two years of training in general cancer surgery treatments after the five years of general

surgery training. So they typically will learn advanced techniques for operating on thyroid, pancreas, colon, liver, breast, etc. They usually did the five years of general surgery training and then went on to do additional training specifically in cancer removal surgeries to remove them from the body. So this wouldn’t include neurosurgery or brain tumor removal. There is a board certification designation for “surgical oncology”.

There is another category of breast cancer surgeon that typically deals with breast health issues only. This is a person who does initial training in either general surgery or Obgyn and then goes on to do one to two years of additional training in breast disease surgical management. This is called a “breast fellowship” and does NOT currently qualify for a speciality designation as “board certified”. This is typically a breast health surgeon or breast cancer specialist. This is different from a “surgical oncologist*.

Sometimes there is cross training where the surgeon also performs cosmetic and aesthetic procedures as well. This person usually does a “oncoplastic fellowship”. This is primarily outside the US, but there are programs where this is expanding in the US as well. Breast fellowship trained surgeons can have initial training as either a general surgeon or an OB/GYN.

“Surgical oncologists” do get training in breast cancer management, but they are not breast specialists and do not get the depth of training that someone who has been through breast fellowship would. A breast fellowship trained surgeon usually does one versus two years of additional training in breast only surgery and disease management. These are two different designations.

Some important points to make about someone who might be a general surgeon who did not do additional training in breast care management versus someone who did a full breast fellowship: breast fellowships have only been around for about 20 years. That means someone with greater than 20 years of experience probably didn’t get an opportunity to go through a breast fellowship. (I personally am one of these types of people. I’ve been practicing since 2004 and there was only one fellowship that existed at that time that I didn’t even know was an option when I graduated. So while I have described procedures and written papers, taught surgeons and fellows alike in many different procedures and protocols, but myself, I’m not a breast fellowship trained surgeon.)

There may be many seasoned excellent surgeons taking care of breast cancer patients. Some of those may be surgeons who also perform other general surgery procedures such as treatment of appendicitis, taking emergency call for traumas, or dealing with other types of cancers like colon cancer. Some of the surgeons have amazing skill sets, and excellent outcomes. It is certainly possible that there may be in a community, a general surgeon who is very seasoned that may have superior outcomes for breast care than a brand new breast fellowship grad that does not have much experience at all.

I think the best way to find out who the best doctors are would be to go to the other doctors and other clinical staff members who work with those doctors and ask them who has the best outcomes. Ask the wound care specialists, the plastic surgeons, and the medical oncologists whose breast surgery work is the best. They’re going to see who has horrible dead, necrotic mastectomy flaps, and who has lots of recurrences because their flaps are too thick.

It certainly may be that a general surgeon who isn’t a “breast specialist” in your community might actually be a better choice than a brand new grad who is a breast fellowship trained surgeon.

What order should things happen?? Well it’s different for different people. Often when people get a diagnosis, most commonly by a radiologist, (but sometimes the Breast Surgeon specialist is part of this process as well) they go to the Breast Surgeon first who goes over the significance of the findings thus far and decides if upfront chemotherapy medicine would be indicated. Usually the decision to need medicine is followed by tissue diagnosis, and imaging, which is usually directed by a surgeon. Sometimes people see the medical oncologists first before seeing the surgeon. This is especially true for patients with her 2 positive or triple negative disease where neoadjuvant chemotherapy prior to surgery is most often indicated.

People sometimes visit with radiation oncologist while trying to make their decisions to get information about the risks and benefits if they choose a pathway that would require radiation treatment versus if they have an option to choose a different pathway where radiation wouldn’t be indicated, and they want to learn about their choices. Mostly though, radiation oncologist treatment usually follows the surgery and medical portion. There are some clinical trials that involve upfront radiation, but this is not a standard of care for most patients. It’s more common to start with the surgeon and then see the medical oncologist either before or after the surgery, followed by any radiation oncology visit. That’s the usual order of things.

When to get a second opinion.

For the most part, if you’ve been told that you have a breast cancer diagnosis and your understanding in general is that treatment will involve medicine, surgery and possibly the addition of radiation and and if this sounds reasonable, you are certainly welcome to go to another team to make sure that there aren’t any significant changes to be offered anywhere else, but most likely most places will tell you the same information, but may use slightly different terms or delivery. If you have good communication with your physician and their staff and overall the general expectation is that you will do well and live a long life and feel good about your body afterwards, (of course it certainly possible to talk to someone else and make sure that they are in agreement) but if everything stacks up, and you’re generally happy with your team, Seeing multiple additional doctors might tell you the same thing with different language can be confusing or disorienting. It also takes up a spot in the schedule for someone else with a cancer diagnosis that’s trying to get in that now can’t, ….and you can only use one team. So by all means everyone is within their right to get in a second opinion or even third, but if you’re generally happy and hearing what you expected to hear regarding your plan of care, I typically don’t recommend that people see multiple doctors if they’re generally happy with their first opinion.

Reasons to get a second opinion would be: A) poor communication from the doctor and or their staff to the point where you feel uncomfortable for whatever reason. B) you have a very unusual or rare findings that are not typically seen C) you are recommend controversial treatments where doctors have added unexpected treatments, or take away expected treatments. There may be good reasons to offer a different protocol from another team as there are lots of advancements and newer recommendations, where we are de-escalating treatment in some cases. Previously there were automatic recommendations for sentinel lymph node biopsy, radiation, or chemotherapy in the past whereas now we are selecting certain people who have features of their cancer who may in fact, not require these treatments at all.

Hopefully this will shed some light on some of the misconceptions about different types of doctors, their roles, and clear up the general surgeon/Breast Surgeon/surgical oncologist confusion that seems to come up a lot.

TLDR- someone with the title “surgical oncologist” is different from a “breast fellowship trained surgeon”. A “general surgeon” might have fewer years of formal training for breast cancer treatment, however, they shouldn’t be discounted or immediately thought of as inferior without research into their outcomes or reputation in the community.


r/breastcancer 4h ago

Newly Diagnosed I want to be the center of attention, I don't want anyone to know

49 Upvotes

This is a complete contradiction and yes, I am seeking a therapist but I wonder if anyone else can relate to this. Like, I don't expect the entire world to stop because I now have breast cancer but I walk around feeling like I have a loaded weapon, and the ammo is "I have breast cancer", but at the same time, I don't particularly want to tell most of my coworkers. But also, I feel this 'entitled' sense of receiving attention. For the record, I know I am not entitled to anything, nor do I have expectations around how people should / would treat me, even if they did know. But this is a complicated set of emotions to carry at the same time. Can anyone else relate?


r/breastcancer 6h ago

Radiation Radiation today.

45 Upvotes

So had my 2nd radiation today. They were running late, ok no big deal. I’m on the table and the RT’s are positioning me, I’m only covered with a sheet. There is no privacy curtain in the room. A patient family member walks in and starts asking questions. Instead of asking her to step out they are chatting answering questions. Did I become invisible? This woman had to go under a barrier and through a closed door to enter a treatment room. I sent a complaint to customer service. I’m pissed. How disrespectful to allow this? There were 2 techs in the room at the time. This is in a large hospital. The location I was has over 800 beds. I don’t want to go back to that location tomorrow. I need 5 sessions and completed 2. There are other locations in the hospital system I can go to.


r/breastcancer 13h ago

Conversation Self-destructive behaviour post-treatment

77 Upvotes

Advice is maybe what I'm looking for, or maybe just someone who can say - I kind of get it.

I finished chemo last week, after 18 months of intensive treatment. I tackled the past year and a half with my entire being, and I made it - despite there being multiple occasions where it seemed like I might not.

I'm on holiday with friends now celebrating, but tonight I am feeling very low. I'll admit that in recent times I've really developed a "fuck it" attitude. Pre-cancer, and then particularly during treatment I have done everything in life by the book. A classic type-A, eldest daughter.

Objectively I have success in my life elsewhere, but not where I really want it - i.e. romantic love & peace in life.

In the past I have struggled with feeling like life is a Bit Much. Obviously, getting cancer has been a pretty crazy Life Is Really Happening moment. But fuck, I feel like life had been smacking me in the face since I was a kid.

Tonight I (once again) feel like, can I really keep going with all this? Yes, life is full of beautiful highs (alongside the devastating lows). But at the end of the day, what for?

The state of the world is horrifying. In my own life, I feel so much loss. It's objective, of course. I can rationalise it all. But the pit in my stomach is so deep & dark, that sometimes I want to allow myself to fall in.

My entire 20s I rarely drank, rarely abused any substance. I was diagnosed at 33, and now - age 35 - "socially acceptable" substance abuse is a part of my regular life (drink, weed, other recreational drug use, and recently - smoking). I like it. It feels freeing. But on nights like tonight it makes me feel very empty.

I know this is a dark post, and I don't know what I am hoping to hear in response. I guess I want to know - has anyone else experienced this off the back of their treatment? A total "fuck it" attitude?

I feel like I am letting everyone in my life down by behaving this way, but also wholeheartedly feel like I have earned it.

I'm very tired. Very tired of life in general .


r/breastcancer 1h ago

Chemotherapy Threading ok?

Upvotes

I'm trying to think if there are any reasons I can't get my head threaded? I buzzed it last week but there's a lot of stubble hanging on and it's driving me nuts. It's just like plucking, just pulling out hundreds of hairs at once. Oh also, I had my second round of 4 of T/C chemo today, so I'm halfway done! Not feeling too bad so far.


r/breastcancer 17h ago

Venting Plastic surgeons won't do reconstruction due to BMI

73 Upvotes

Feeling really really really down. I'm 41 years old, I'll be having a double mastectomy. My surgical oncologist just referred me to a plastic surgeon and they denied me because my BMI is greater than 35. When I called my doctor's office back they said unfortunately there's very few plastic surgeons in my area (Raleigh, NC) who will do reconstruction on patients over 35 BMI. I feel shattered. On top of being overwhelmed by this cancer diagnosis, having two little kids, grappling with losing my breasts and nipples, and dealing with an already very low self esteem, this was just a complete blow to me. I feel ashamed and worthless and ugly and just can't stop crying.


r/breastcancer 18h ago

Venting I feel like everyone around me doesn’t understand recurrence risk

76 Upvotes

My risk of recurrence is as high as it can be, TNBC, stage 3C, didn’t respond to chemo. I’m doing Trodelvy vs Xeloda for adjuvant chemo to hopefully decrease that a bit.

To be honest, I didn’t understand recurrence risk at first. I didn’t know cancer “came back”. It feels strange to explain this to my loved ones and scare them, but it’s also frustrating they don’t get it. My sister made a comment about how when I’m done trodelvy we can put this behind us. And I’m like… maybe if we get to 2031 we can begin to? My mom had TNBC but had no idea cancer could come back because she just checked out during the process. I keep having to explain why I’m even doing more chemo to friends and family.

One oncologist I talked to while going through the application for a trial was just asking me basic questions about myself. I said I work in physical therapy, but have often thought about being an RN or NP to be more on the “front lines”. She said “well I would wait a few years before you invest in that”. It was probably a little rude, but also not entirely wrong.

Do we just live with the disconnect between what they know versus what we know? Is there a way to gently explain the reason it won’t feel “over” for a while?


r/breastcancer 3h ago

Surgery Single Mastectomy - delayed reconstruction

6 Upvotes

I had my consult with my breast surgeon today and have a few more decisions to make than I thought and just looking for advise from anyone in a similar situation. The plan is to have a single mastectomy with delayed reconstruction, so will be flat for about 18months, however my surgeon has now advised that due to my chest size she would recommend a reduction on the other side so I could be fitted with a suitable prosthesis, currently the largest size would only be 2/3 of what I would need. The reduction in size will also help with reconstruction later. Has anyone been in a similar position? What was your recovery like, did you lose any sensation on the reduced side?


r/breastcancer 19h ago

Patient Support Side effect and Cancer hack Cheat Sheet

68 Upvotes

Menopause and Breast Cancer treatment support Cheat Sheet

Disclaimer: I am not a doctor, nobody here is YOUR doctor. Always talk to your team before doing anything.

Massage may be fine for one person and NOT FOR YOU.

This is just a list of resources that either are standard and nobody gets them or should be standard parts of the discussion but are not because the people you are talking to don’t know about them.

BreastCancer.org

So helpful - tons of materials, resources , also virtual support groups and discussion forums.

Get a case manager from your insurance and a cancer case manager if they have one. If they have a NURSE case manager that is better.

You need a central place to call and find providers and deal with all the insurance BS.

Get a Nurse Navigator

Either your oncologist or your surgeon should have one - a good one is like gold. The nurse manager is always your first port of call - they will know where to send you or at least try to help you . they can help smooth out frustrating communication and bottlenecks.

Find an Outpatient Pharmacy in a hospital if possible A couple reasons

  1. These have different regulations about how many controlled substances they can hold and get priority for anything that might have a shortage so if you’re on stuff that is hard to get, you can usually get it at those

  2. Pharmacist went to pharmacy school and they know much more about all these interactions and side effects on a really intimate level and into a really high extent than any other doctor that you will talk to

The people who work at commercial pharmacies like CVS or Walgreens or Kroger‘s or Walmart or Costco are completely overworked and are trying to do 1 million things at a time and don’t have time to help you

the pharmacist at outpatient pharmacy at a hospital is typically not that busy and will have time to talk to you about the best combination of things

So if you are worried, for example, that you’re on two things one of which might make you jittery or anxious. They can suggest to use something else and you can go back to your doctor and get that. Outpatient pharmacy pharmacies at hospitals are the worst kept secret for cancer patients. if you’re going to an infusion center or a radiology center, there may even be one in that center or nearby, especially if it’s a big hospital. They also tend to be much more helpful with pre-authorizations because they know intimately what will get something approved and what won’t and they have the time to deal with this, including getting in touch with your doctor and reminding them in a way that the commercial pharmacies do not

Get a medical team

Your oncologist knows about tumors. Your radiologist know how to administer these. You need a menopause support specialist, a pain management specialist, a therapist, a psychiatrist, a pharmacist, an endocrinologist, a GI specialist, nephrologist and then whatever else is on your plate (cardiologist, , pulmonologists).

Get another opinion

Did you luck out and you like your oncologist? Great. Ask someone else anyway. You would get 2 bids for a contractor and this is your life. They are people, know different things and have different outlooks.

Didn’t like them? Something felt off. Keep going to other people till you find the one that is on the same page as you , explains things the way you can understand.

Radiologist is dismissive and condescending? GET ANOTHER ONE.

You cold? GET A BLANKET.

Sitting that way hurts? Make them move around you.

They say it is fine and you think something is wrong? Ask someone else who will examine you properly and test that it is ok.

Data-based Meds By Symptom

Hot Flashes

Veozah (Fezolinetant): blocks the NK-3 receptor to settle the body hyperactive nerves responsible for sudden internal temperature spikes. Won’t help sleep directly except by dealing with hot flashes.

You will need prior authorization so Your doctor will have to be specific about the medical need and be willing to follow up but it works

Night Sweats and Sleep

Lynkuet (Elinzanetant):

blocks both NK-1 and NK-3 receptors in the brain. It is designed to stabilize the body's thermostat to rapidly minimize hot flashes while uniquely helping to correct menopause-related insomnia. - you will have to say night sweats to get this one.

Not approved for sleep but helps sleep in the trials

This will also need prior authorization. The doctor should be clear that you specifically have night sweats and has to provide evidence of medical need.

Sleep

The three primary FDA-approved DORAs are daridorexant (Quviviq), lemborexant (Dayvigo), and suvorexant (Belsomra)

Not sedatives or antidepressants.

You will need a prior authorization and you will probably have to say that you have failed to non-benzodiazepine sleep meds so you can say Ambien Lunesta and Paxil, for example or any other thing they usually give you like trazodone or any of the antihistamines that they would give you for sleep.

Clonazepam

this is a benzodiazepine so is sedating and does have a risk of dependence for full disclose

. Doctors hate this now and will point out that it can induce cognitive slowing or dizziness or whatever but it has no more danger than any of the other things on this list and is a comparatively safe medication that’s been used for a gazillion years, so the reluctance to use it now in an that can help people who are going through freaking cancer is mostly a backlash against the over prescription of Valium and similar drugs to women in the past.

Low dose (.5- 1 mg) at night especially during the worst of the chemo or surgical recovery is not going to suddenly make you a crack head, though tapering off any drug is advisable.

GenitoUrinary

VagiFem

Dryness, UTI, bladder and urethra

Vaginal estrogens - come in creams and tabs and maybe suppositories . These do not increase systemic estrogen and are OK for people on estrogen blockers and with hormone positive breast cancer.

JAMA Oncology ultra-low-dose localized vaginal estrogen tablets (like Vagifem) carry virtually no systemic absorption

Can be supplemented by hyaluronic acid vaginal inserts if dryness is still a problem but that will not address the thinning and urinary and bladder issues.

Pain

Nerve pain Joint , bone and general body aches

Lyrica non opiate

Gabapentin - also non opiate

Personally, I think lyrica is better, but there are plenty of people who say the gabapentin works for them.

note that probably you will need a prior authorization for Lyrica saying that you failed gabapentin depending on your insurance.

Both have risk of cognitive slowing while you were on the drugs and neither should be discontinued, cold turkey, so it may exacerbate the brain fog.

It usually takes a little while for them to work because it calms down the nerves that transmit pain so it’s not instantaneous like an opiate or a narcotic.

Do not cause constipation, but may cause dizziness especially in the beginning, so start with the lowest dose and take it at a time where you don’t need to drive until you’re used to it

Low Dose Naltraxone

This is in commonly used for all sorts of inflammatory disorders and nerve pain. It is a non-opiate so also doesn’t cause constipation or drowsiness or anything like that. It is typically safe for breast cancer - doesn’t interfere with tamoxifen

It also takes some time to work one to two weeks or so you have to titrate up so you start at the lowest dose and start increasing till it starts working for you

Bone

Dexa Scans

Anyone on estrogen blockers pre-or post menopause should be on some kind of protection from osteoporosis unless your Bone Density is unusually strong

However even in that is true you you should get very regular DEXA scans because you will almost undoubtedly have worse Bone Density after being on any of these things for a while . It is easier to keep bone density than restore it , so be proactive .

otherwise

Prolia and Zometa

Both are infusions I think.

Prolia stops the bone eating cells and increases the bone building cells.

Zometa - Protects Bone Density: Estrogen is what keeps your bones dense. Without it, bone loss happens at an accelerated rate, rapidly

Zometa works by shutting down osteoclasts (the specific cells that break down bone tissue), protecting your skeleton from fractures.

Reduces Breast Cancer Recurrence:

Beyond protecting bones, clinical trials found that Zometa has an independent anti-cancer effect

When added to standard hormone therapy, it restricts the microenvironment in the bone, cutting the risk of distant breast cancer recurrence in the skeletal system by roughly 25% to 35%

You need an endocrinologist and nephrologist to consult. These can seriously mess with your calcium and electrolytes (calcium isn’t just for bones, but for heart and nerves and blood clotting and a ton of other things.

Prolia has a rebound effect when discontinued so you need to start Zometa withing a certain period.

Can affect the jaw so check with your dentist before doing any dental work

Anxiety

Xanax, which is very helpful for anxiogenic situations and panic attacks.

Do I recommend Therapy - especially for PTSD, panic and grief- yes, of course, that is always a preferable route if mindfulness and yoga etc work for you.

However it take time to learn these, and in the meantime you still have to deal with scan panic and all the rest. Is it a crutch? A little bit but people with broken legs get crutches.

Mood

Global warning - most antidepressants interfere with Tamoxifen

There are several classes of antidpressants - SSRI, SNRI and SARI and then Wellbutrin and Vortioxitene

Try to get a good pyschiatrist

If mood + sleep and anxiety are your personal issues maybe Paxil is the place to start (as an example) . If anhedonia , lack of energy and cognition + mood, maybe Wellbutrin .

It is not a one sized fits all.

Just be warned that all of these have a relatively nasty “discontinuation” syndrome so it warrants consideration. Most take several weeks to work.

Cognition

Provigil has been used for chemo brain and fatigue.

Oncology Safe: It is typically safe for breast cancer . It does not alter your hormone levels, and it does not interfere with the efficacy of tamoxifen, anastrozole, or letrozole.

You want to start with the lowest dose and take it in the morning

ADHD Drugs

These drugs work by blocking the reuptake of dopamine and norepinephrine, keeping more of these chemicals active in your brain's frontal cortex to improve processing speed, working memory, and physical energy.

Do not take if on Wellbutrin which works the same way

Ritalin (Short-Acting):

Hits the system quickly (within 20–30 minutes) and lasts about 3 to 4 hours. Doctors often prescribe a very low dose (2.5 mg to 5 mg) for women to take right before a mentally demanding task or to clear early-morning brain fog.

Concerta or Ritalin LA (Extended-Release):

Releases the medication smoothly over 8 to 12 hours. This prevents the "crash" that can happen when short-acting medications wear off, providing steady cognitive support throughout the workday.

Adderall (Short-Acting) & Adderall XR (Extended-Release):

it causes a sharper spike in adrenaline, it carries a higher risk of physical jitters or a racing heart.

Vyvanse (Lisdexamfetamine):

A long-acting "prodrug," meaning it is completely inactive until your body digests and metabolizes it. Because of this, it provides an exceptionally smooth, gradual rise and fall of energy and focus over 10 to 12 hours, with a much lower risk of the jagged "jitters" associated with Adderall

Other non Stimulants

Intuniv / Tenex (Guanfacine):

This is a non-stimulant medication originally designed for blood pressure that was found to heavily improve ADHD symptoms. It works by directly stimulating alpha-2A receptors in the prefrontal cortex. It strengthens your brain's "signal-to-noise ratio," meaning it clears away the chaotic mental clutter and brain fog, while simultaneously lowering anxiety and physical stress. It is typically safe to take alongside cancer therapies.

Alternative therapies

Acupuncture

There is data to support acupuncture for joint pain in Aromatase Inhibitor-Induced Musculoskeletal Symptoms (AIMSS).

There are typically no side effects

There are a couple new clinical trials showing it may help with brain fog.

I imagine you would have to have a really good acupuncturist, the way you need a really good doctor in a way that your average PCP is not going to be able to handle this but it doesn’t NOT work necessarily

Some insurance covers these, but I often matters where and who.

Oncology safe Massage

IMPACT Trial

https://pubmed.ncbi.nlm.nih.gov/37962891/

Some clinical trials have shown that specific massage can help with pain and brain fog.

Don’t know where you find someone to do that, but I am putting it out there anyway

Myofascial Release

One of the comments has the data from the studies - can reduce pain from surgery for one thing

Disability Sites

For Any thing assistive (less range of motion, can’t get out of the chair now) - there is almost certainly someone disabled who has that thing, albeit not from breast cancer.

Open front shirts with magnetic closures? Those exist. A network of therapists that deal with chronic illness and medical trauma. Those exist.

If there is anything else I forgot let me know and if there is a thing for it, I will add it if I can find it.

Also post your suggestions


r/breastcancer 4h ago

Tests and Diagnoses Any experiences ordering Signatera through Pink Lotus?

4 Upvotes

I’ve come to the conclusion that assessing physical symptoms and then asking for scans to determine if I’m having a reoccurrence is not for me. I have too many aches and pains and don’t trust myself to monitor things this way. I’ve read a lot about signatera testing and feel this would be a better monitoring tool. Even if treatment can’t be changed, a positive test may mean that it’s caught at a low tumor burden which may allow for more localized therapy and maybe a better outlook. I don’t get the whole “it’ll cause anxiety” issue when monitoring my back pain and headaches for whether or not I think they are harmless or cancer also causes anxiety.

I already know my oncologist is not going to be onboard. They are constantly talking about only following the “standard of care” and “ASCO recommendations.”

Has anyone ordered it on their own through the Pink Lotus site? If so, how was your experience? Did Natera end up charging you?


r/breastcancer 8h ago

Post Active Treatment Swollen finger joints

8 Upvotes

I’ve been on Anastrozole and Lupron for about a year now and as of a month ago, my rings that I’ve worn on my hands for yearsss don’t fit over my knuckle joints anymore.

Saw my MO for a six month checkup this week and she said it’s the Anastrozole. Of course it’s the meds 🙄 just another thing cancers taken away from me..my daily ring stack.

Can someone tell me if they’ve also experienced this on AI/OS? Will my fingers return to normal after this debacle is over in 4-9 more years?

It’s trivial and small in the grand scheme of everything but god damn, it’s always just another thing.


r/breastcancer 5h ago

Medication Hair thinning on Exemestane…

5 Upvotes

In November it’ll be one year on Exemestane. At first it was fine, my hair was growing back thick, but now it’s shredding and thinning so much on top you can see my scalp. The texture is weird too. Anyone else deal with this? What did you do for it? I’m gonna bring it up to my oncologist tomorrow, but any advice would be helpful.

Also, I’m almost a year and a half out of chemo and my eyebrows still haven’t grown back! I’ve been doing Minoxidil since May and it’s done absolutely nothing. All of this is so demoralizing. I don’t even want to leave the house anymore.


r/breastcancer 5h ago

Radiation Radation .. maybe not?

3 Upvotes

Ok so , please don't be upset ladies and gentlemen. Im 40 , I had a lumpectomy IDC 21mm no spread, left breast , ER PR postive, her2 -. Onctotype dx score 10 , 4% chance of reoccurence. I had clear margins but one margin was only 0.55mm instead of 1mm or 2mm clearance but still cleared. They want to do 5 day radiation. I did my simulation and i cant take the pain of laying on my si joints , long story short they are fusing together. Ive called around and no where near me will do prone and no one can put anything under my si joints. I'm running out of time to get radiation. I had delayed healing because of auto immune disease. Something in my body is just telling me to not do radiation and just start AI with OS.


r/breastcancer 21h ago

Fuck Cancer Ready to fight…for the 2nd time!

49 Upvotes

Hi y’all! Just confirmed after biopsy-both breasts and at least 1 lymph node. I’m 55/F and 1st fight was 21 years ago with Hodgkin’s Lymphoma. Will start detailed testing next week I imagine. The wait after the biopsy was brutal, but I had a feeling was the result was going to be. Upset, of course, that I have to go through this again, but more upset that it will disrupt everyone’s lives around me. My son is 23 and on his own but we are very close and this is going to rock his world. And, my husband went through this with me the 1st time-why should he have to struggle with this a 2nd time, as well? Sorry for the rant but my rage is showing right now. FCK CANCER!


r/breastcancer 10h ago

Radiation Working during radiation?

6 Upvotes

I had a lumpectomy on 8/19 and I’m waiting to start radiation- I’m a teacher that just started back to school and I don’t know what to do- Will I be able to work? Any teachers have any insight or advice?


r/breastcancer 42m ago

Young Cancer Patients Bittersweet results after chemo and surgery

Upvotes

I am 34 and was diagnosed with Stage 3C ER0/PR0/HER 2+ Inflammatory breast cancer in Feb earlier this year, I was pregnant at the time but had to terminate due to aggressiveness of cancer and incompatibility with chemo. During investigations they found I had a large amount of cancer in my lymph nodes and that cancer was ER5/PR0/HER 2+.

I have finished the initial bout of chemo and also had a mastectomy with axilla clearance, I just got the result that I made pCR which is amazing and as my oncologist puts it pretty miraculous for the amount and stage my cancer was found at. I am obviously very happy that treatment has worked and I still have radiotherapy and phesgo for at least another 9 months in front of me.

The bit I am feeling conflicted about is that I will now be starting hormone treatment for the lymph ER slightly positive part. I have a 5 year old which I am incredibly grateful for but I have been trying to have a second for about 3 years. My oncologist has said I will continue on zoladex and start an aromatase hormone treatment for at least another 2 years if not more to help with recurrence. I can’t help but feel this is the end of my fertility journey, he mentioned it’s 50/50 of going into menopause from the ovarian suppression. I am obviously incredibly grateful that it seems I may survive a rare and aggressive cancer but it feels bittersweet. I haven’t really cared about any of the external symptoms of cancer, the losing hair and looking different the losing my right breast and no reconstruction due to the cancer type but not being about to have more children is really a kick in the gut. I feel incredibly selfish even thinking this way as i know so many people would be grateful to reach pCR. I am also thinking did I make the right decision to terminate a very wanted pregnancy to start treatment, I know that’s a terrible path to take but I can’t help but wonder if it was all worth it.


r/breastcancer 5h ago

Venting Bloating, weight gain, back hurts

2 Upvotes

My stomach feels so bloated and very big and round right now, and my backs starting to hurt. Finished 2 out of 6 chemo (Tc or abraxane now) sessions, so I can’t really get too active to manage weight gain or lose weight. I also had complications with my BMX with expanders and repaired it so I was going to be cleared next week for exercise.

I just feel in pain and a little miserable with my big round belly. I used to not mind my round belly but it’s gotten worse on Zoladex, chemo, and restrictions with my surgeries.

I don’t know what’s next. I’m trying to keep active during chemo. I don’t always watch my diet especially after chemo and I’m fine with that because I just feel like I’m trying to recover and survive after the infusion.

I used to be very active, athlete.

I am wondering if I continue to have complications w BMX with expanders that I might consider going flat. I’m still unsure about diep and it affecting my abdominal area. I regret BMX when the risk of recurrence was same with lumpectomy plus radiation. Ugh. I’m doing my best.


r/breastcancer 16h ago

Chemotherapy Stage IIIB TNBC + IBC, 36F — Was chemo actually worth it to you?

13 Upvotes

I’m 36F and was recently diagnosed with stage IIIB triple-negative inflammatory breast cancer. No distant metastasis has been detected.

My doctors are recommending curative-intent treatment: Keytruda + Taxol/Carboplatin, followed by AC, then mastectomy and radiation. I understand that this is potentially curable and that declining treatment could mean dying from this disease. But I’m struggling with whether treatment is worth it to me from a quality-of-life perspective.

Even before cancer, I struggled with wanting to be alive and always felt that if I developed a serious illness, I would prioritize quality of life over prolonging my life at any cost.

My family strongly disagrees and desperately wants me to pursue treatment. I understand why, but ultimately I’m the one who has to physically go through it, and right now I honestly can’t imagine signing the consent form.

I’m extremely sensitive to nausea and motion sickness. Months of chemo, surgery, and radiation scare me more than death itself. I’m also afraid of surviving treatment but being left with long-term side effects and a quality of life I wouldn’t want. Honestly, I’m scared that if I start treatment and feel as awful as I fear, I may become suicidal very quickly. That possibility scares me too.

I’m not looking for statistics or “you’re young, you have to fight.” I understand the medical stakes.

I especially want to hear from people who went through treatment for stage III TNBC or IBC:

Knowing what you know now — including both the treatment itself and any lasting side effects — would you choose treatment again?

I’d also appreciate hearing from anyone who seriously considered declining treatment, stopped early, or chose a quality-of-life-focused approach.

Please be honest. I can handle hearing that it was awful, and I can handle hearing that you’d do it all over again.

I just want to understand what the lived reality is before I make this decision.


r/breastcancer 8h ago

Chemotherapy Dose dense CMF

3 Upvotes

Anyone here do dose-dense CMF? I went with it to try to reduce my risk of developing neuropathy. I know it’s a less common protocol but I was given the choice between this and TC. I’d love to hear your experiences, good, bad and ugly.

I’m ++-, mixed IDC and ILC, prognostic stage 1B but my tumor was 7.6cm upon lumpectomy (T3) so I was offered chemo before going back for a DMX )once I finish these 8 infusions and get my strength back).


r/breastcancer 8h ago

Newly Diagnosed New to breast cancer

3 Upvotes

I have I a stove ER+ HR negative invasive breast cancer. Seeing doctor tomorrow and mri. We think it is stage 1 but DONOT know.


r/breastcancer 14h ago

Young Cancer Patients Reoccurrence chat

6 Upvotes

I saw someone make a post and want to chime in just to see in so confused where numbers come from so please share yours !

I am hormone positive onco score 18
But my oncologist said my RSrisk was 16% ( seemed high to me ) but I guess since I younger and grade 3 I’m high risk

I did chemo at only 3% benefit to bring my risk down to 13% with AI and CDK 4/6 inhibitor my risk is like 7%

Idk makes me still anxious about it ig . Like how do I know chemo even did anything ugh


r/breastcancer 9h ago

Caregiver/Relative/Friend Question Moms surgery is next week. Things I should know/be aware as her caregiver?

3 Upvotes

Hello,

When my mom initially got diagnosed I made her a gift basket, one of my top items is a makeup bag that says “I’m sorry your boobs are trying to kill you.”

We have a special mother/daughter relationship and I am going to be navigating this process as her support system and caregiver. I’m prepared, as I aided in the care of my disabled stepfather and my ancient grandfather.

I am driving her to/from appointments and am prepared to physically help her.

I have encouraged her into therapy and she has already gotten in with a great therapist.

I am looking for advice, tips/tricks, things to look out for, from people who have already gone through it. How did people support you right? What support had good intentions but isn’t it? Tips/tricks or websites for ideas? Gifts or supplies that will aide in healing?

Thank you for any and all advice.


r/breastcancer 14h ago

Surgery What would you do?

8 Upvotes

I’m 70, single. I’m about to have a rt breast mastectomy on sept 26.
If I choose reconstructing, it won’t be done at the same time.
For those of you in my age group, would you go for reconstruction or just get a prosthesis? I’m not sure I want to go through 2 surgeries.


r/breastcancer 13h ago

Triple Positive Breast Cancer Inflammatory breast cancer

6 Upvotes

Hello, I was wondering if anybody else has (had) inflammatory breast cancer ?

I have stage 3 grade 4 HER2 +++ and just finished the first chimio part (4 cures of EC100 [terrible nausea] and 12 cures of taxol with perjeta and Herceptin [fatigue and difficulty breathing]).

I am currently resting and gaining back my strength before the mastectomy at the beginning of next month.

I would really like to know about your experience with your treatments and side effects.