Recurrence dilemma... help!

Brandi999 · October 2018

I was recently diagnosed with local recurrence. My body cannot handle chemo or Tamoxifen. I am leaning towards no treatment but my oncologist said if I don't have the tumor removed it will likely eat through my skin and cause an open gaping wound that won't heal and that may go on for years before it metastasizes and finally kills me. She also wants me to do radiation to avoid the same thing but most of my lymph nodes on that side have already been removed making me a prime candidate for lymphedema. Since I can't do chemo or Tamoxifen, it's clear to me that death is inevitable but I have to make a choice that will give me the best quality of life with the time I have left. I am so overwhelmed and stressed! Radiation scares me to death. I feel like I'm having to choose between death of a thousand cuts or death by bathing in a toxic waste dump. Please help me find a path.

ksusan · October 2018

I'm sorry to hear it. If it helps, I and many people had radiation without developing lymphedema.

Trisha-Anne · October 2018

I'm so sorry you are going through this. Cancer sucks big time!

If you can't do Tamoxifen, what about an AI? Like Arimidex, Femara or Aromasin. That may help. Some women can't handle one, but can easily tolerate another.

It's your choice, but if you can't do chemo (and I understand that completely!) wouldn't it be best to at least remove the tumour?

Leidy222588 · October 2018

I'm so sorry you are feeling overwhelmed. My heart goes out to you. I had to have all my lymph nodes removed, and radiation did give me lymphedema. (Remember: you may not even get it!) I totally freaked out at first, but honestly I have really gotten used to it and now it's not a big deal. I wear a black sleeve and glove on my right (dominant) side, and people almost every day ask me if it's a fashion statement and/or tell me I look elegant. Do I like lymphedema? No. However, it's doable. As a college teacher I just tell my students at the beginning of the semester that I have an arm that's a little messed up, and they absolutely do not care. The musician Kiku Collins and the actress Kathy Bates really inspired me. That helped a lot. Hugs to you!

JoE777 · October 2018

if the radiation is to the tumor before removing it, that shouldn't be as uncomfortable as whole breast.

KBeee · October 2018

Get some other opinions. You do have options. Surgery is an option... short course radiation...ovary removal...aromatase inhibitor...listen to all options from various places, then choose which are the best for YOU.

Brandi999 · October 2018

Thank you for the responses! I just saw my surgeon yesterday and we are waiting on making a real decision until after I get a PET scan to make a more informed decision. I made it known that my goal is whatever causes the least amount of suffering even if it means having a shorter life. Sorry if that is triggering to anyone. Living a life of pain and suffering is far worse than death for me. I am totally freaked out about radiation but it is encouraging to know that lymphedema is manageable and the alternative is a tumor leaving an open gaping hole. That freaks me out more. I need to talk to her about the shorter number of radiation sessions. My body so far is uber sensitive to treatments that everything scares the hell out of me. Now to see what my scans say...

grainne · October 2018

I'm so sorry for your distress and anxiety. I'm just chipping in to say I had whole breast radiation and 3 targeted boosts. I had some minor skin reddening and mild oedema and nothing else. That was 2.5 years ago. I would have it again without a second thought.

Please grasp the simple fact that a local recurrence does not mean death from bc is inevitable. Don't even think about giving up hope. You have choices, which I know can be overwhelming. Hold your nerve: things will settle. The very best of luck with your scans.

Brandi999 · October 2018

Just wanted to give an update. I really didn't want to do radiation but then I found out that door #1 (radiation) was a picnic compared to what would end up happening if I didn't get it. Door #2 contains a "fungated breast tumor". If you are very curious and have a strong stomach go look it up in Google images. I now have a scheduled double mastectomy and as much radiation as they would like to give me. I'll glow green at this point. Just no fungated breast tumors!! I still haven't done the rest of my screening but whether this has metastasized or not is irrelevant. Just no fungated breast tumors. Get it out of me NOW! I do the rest of my screenings on Nov 1st.

Parrynd1 · October 2018

Brandi, you said no chemo, but what about Immunotherapy? I’ve heard, and from my own experience on both, it’s much easier to tolerate. I get the stressed feeling of having to make a decision and wanting to do what’s best for you. At the end of the day you are the one who has to be ok with the choice and are the only one who knows what you can and can’t live with. I just encourage you to not only look up the pros and cons, but maybe reach out to people who have gone/didn’t go the routes you have to choose from. I only say this because I had preconceived ideas about what certain treatments (radiation, surgery and AC chemo to name a few) or SE’s would be and come to find out I was very wrong in good and bad ways.
Best of luck!

Anonymous · October 2018

hmmm.

You have a similar original dx to mine. I had cancer in one node after bilateral axilla clearance. I had double mast. I have had recurrences in both breasts and so have had radiation on both sides now. I do have lymhedema in left arm..it was apparent from early on though that the arm would be troublesome. Sounds like that hasnt happened with you. Being menopausal due to chemo I did not tolerate tamo at all..then post menopause I tried aromasin and suffered bad depression. When stable on anti depressants I took aromasin for a year. I did get a recurrence in 2012.. that is 10 years later. Still local! Of course you need to get the tumour removed even if you do nothing else. I wish you all the best making your decision.

KBeee · October 2018

Hoping all goes well with your surgery and radiation.

buttonsmachine · October 2018

Brandi, I'm a bit of a late-comer to this conversation, but I just wanted to offer you some support. I was in a similar situation - I had a local recurrence that was spreading into the skin, so I probably would have ended up with the dreaded "fungated breast tumor" shortly.

I had a chest wall resection (aka right mastectomy #2), a skin graft to close the wound, a second course of radiation, and I'm now on Xeloda, which is a pill chemo. I know that sounds like a lot, but it really wasn't terrible. I don't think I could tolerate the IV chemos anymore either, but Xeloda is SO much better for me.

Anyway, my point is, there are options. Keep us posted, and best wishes to you on your upcoming tests.

CaliKelly · October 2018

Just want to add my experience, radiation a picnic compared to chemo! It's uncomfortable and it's a bore to go everyday, but I felt fine. I would go right from radiation to the gym, workout as usual. My skin was red, sore, a small scab over collarbone area was worst, but really , not that bad! Interestingly,I had a triangular red patch on back , to match front. Healed quickly afterwards. Get Miaderm cream, helped me. Hate that this is happening to you! Stay strong😚❤

Alicethecat2 · October 2018

Hi Brandi

The only way I could tolerate chemo was at 80% of the standard dose. An option you could discuss with your oncologist?

Best wishes

Alice

Brandi999 · October 2018

Thank you for the comments ladies! I will talk to my oncologist about immunotherapy to see if I could be a candidate.The comments about radiation are encouraging. I have a meeting with the radiologist Thursday so I'm hoping I can get away with just a few sessions. The reason I have no interest in chemo is primarily the permanent side effects but also the personality changes. I've finally gotten to a pointaand the right meds which give me a sense of inner peace I've never known before. I am unwilling to lose that. Chemo treats the general body for cancer cells. I am not really concerned about death or metastasis. That may seem unconceivable to some. It may seem like a death wish. It is not. My aim is treatments that contribute to my quality of life only. There is more to life for me than keeping a heart beating.

CaliKelly · October 2018

As far as I can tell, I've had no lingering problems from 25 radiation treatments. Reall y had no problem with it at all. Agree with you about chemo! I still have problems from TAC chemo and Xeloda. Quality of life seems just as important as any other considerations in our decision making. But my 2 cents- radiation was the easiest treatment. Good Luck! 💚

Recurrence dilemma... help!

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