r/BreastCancerSurvivors

I took time off work this year to battle TBNC. That ran out so I went for unemployment. That's running out but I'm still struggling to get back to work. I did apply for disability but also despite having to wait 6 more months to begin breast reconstruction it's not certain I'll get disability so I'm considering work again in the meantime maybe waiting a year to reconstruct so I can take out work coverage again...

I have no idea how to navigate any of this. I hate the wig and prosthetics but I can't go outside with such short hair, weight, adrenal insufficiency, no boobs, insecurity...I'm struggling so bad.

Do I go back to work part time? Job market sucks for entry and I have no skills. Is there some unknown pathway I don't know about? I was only able to stay home because my roommate made enough along with my light employment to make ends meet...but I have to hold myself up.

Any triple-positive breast cancer patients here using Signatera? I’m considering starting it soon( completed active treatment in April and on anastrozole for over a year) and would love to hear your experiences. What prompted you to start, has it been helpful, how often do you test, and does your oncologist support it? Any insights would be greatly appreciated. Thank you!

Anyone have a drink while on Xeloda? Side effects worse or about the same?… asking for a friend (that friend is me)

I was diagnosed with triple-negative breast cancer at 30. My stage was T2N1M0, and my genetic testing came back negative.

I’ve now completed 8 cycles of chemotherapy + immunotherapy, followed by breast-conserving surgery and ALND. Radiation is still pending, along with 9 more sessions of immunotherapy.

My Ki-67 was 80%, and because my cancer was aggressive, my oncologist wasn’t confident that we could safely take the ~21 days needed for fertility preservation. So I had to start treatment without freezing my eggs/embryos.

I continued getting my periods until around my 7th cycle, but they have now stopped. I have no idea yet whether this is temporary or permanent. On top of that, I’m having extreme hot flashes that are honestly difficult to describe.

Because I had lymph nodes removed during surgery, I’m also constantly worried about lymphedema and what I should or shouldn’t be doing to reduce that risk.

And then there’s the biggest fear of all: recurrence. I know TNBC can have a higher risk of recurrence, and intellectually I understand that treatment is being given to reduce that risk. But emotionally, I’m struggling with the thought that after everything I’ve gone through, there is still a possibility that it could come back.

For the last six months, I feel like I haven’t actually had the chance to process any of this. I’ve just been going from one appointment/session to the next chemo, scans, surgery, recovery, the next treatment… and now radiation and more immunotherapy are still ahead.

Sometimes I genuinely ask myself: what is the point of putting my body through all of this if there is still a chance of recurrence?

So I want to ask people who have been through TNBC treatment : How did you deal with the fear of recurrence?
And more importantly, once active treatment is over, what can I realistically do to reduce my risk of recurrence as much as possible? What lifestyle changes, exercise, diet, follow-up, or other evidence-based things actually matter?

I know nobody can guarantee that it won’t come back. I just want to understand what is genuinely within my control, rather than spending the rest of my life being afraid of every ache, scan, or symptom.

If you’ve been through something similar, I’d really appreciate hearing how you coped emotionally and practically.

I have noted several posts about women losing sensation/feeling in their breasts after mastectomy. PLEASE educate yourself as much as possible about ALL potential procedures and follow ups. It can save future heartache.
So, nerve allografting was started several years ago. During mastectomy they will salvage 2-3 axillary nerves-possibly split them and graft them onto donor cadaver nerves.
After surgery as you heal you will have to stimulate (heat/cold/pain/touch/soft) each quadrant of your breast every day to encourage nerve growth ( think of a root system in a plant and the branches spreading out). 3-6 month window should see return of feeling.
OR… DIEP flap surgery with skin, arterial, fat and nerve grafting from your own body will give you warm, natural feeling breasts with the same potential for nerve growth as the allograft procedure.
If you have implants? You can still go back and get the DIEP flap surgery.
Consult with a board certified MICROVASCULAR certified plastic surgeon.
Find a surgeon that has 3D VECTRA imaging.
It will take a series of photos and give you an idea of before and after surgery.
The more you know? The better you can advovate for yourself.
And NEVER settle for anything less than what makes YOU feel comfortable with yourself. Don’t ever let a doctor or surgeon pressure you into making a decision before you are comfortable and get a second opinion if you need to ( yes, insurance has to cover it-all of this actually).
Blessed be…s

Update: In answer to a question that someone asked on here? You CAN have this nerve allograft procedure AFTER a mastectomy!!!!
Timing Options
Immediate Reconstruction: Performed at the exact same time as the mastectomy and initial breast reconstruction.

Delayed Reconstruction: Performed weeks, months, or even years after the initial mastectomy.

Revision Surgeries: Done during secondary or revision procedures (such as swapping implants or switching to a flap reconstruction).

How Delayed Nerve Grafting Works
Nerve Identification: Surgeons locate the previously severed sensory nerves in the chest wall (such as the intercostal nerves).

Allograft Bridge: A sterilized human nerve allograft (like Resensation) is used as a scaffold to bridge the gap between the chest nerve and the target tissue or nipple.

Regeneration: Over time, nerve fibers slowly grow through the graft to help restore touch and sensation.

Things to Consider
Nerve Availability: Performing the procedure later depends on whether viable nerve endings can still be identified and safely reconnected.

Prior Radiation: If you received post-mastectomy radiation therapy (PMRT), it can sometimes impact tissue and nerve recovery, though studies show sensory restoration is still possible in many cases.