triple negative, neoadjuvant chemo, pCr: radiation?

sanfrancisco2017 · December 2017

For any of you with triple-negative, who are terrified, as I was, know that I got a complete pathological response cPr after 5 weeks of Taxol and Carboplatin. I am 59. The 2 cm tumor disappeared. After 12 weeks, I had breast reduction --which was more than a lumpectomy and less than a mastectomy--which confirmed pCr, no cancer in any tissue or two lymph nodes. I was always very averse to radiation for the long term effects, and am aware that whether to have/not have radiation after pCr is beginning to be discussed. Radiation definitely helps if the cancer was stage III, or if there was still cancer in the lymph nodes. It is the standard of care for lumpectomies, to eliminate the LRR local regional recurrence of triple negative in its original breast. It is often an option after a mastectomy. But radiation still carries some current side effects, (Robin Roberts--lumpectomy, chemo with AC and Taxol, then radiation, then Myelodysplasia--bone marrow transplant after that.) And my situation wasn't stage III or lymph node involvement. It cleaned up fast. Like all of us, I'd like to do the most possible with the least future harm. Has anyone felt good or regretted opting out of radiation? My docs are split 2--1 in opinion. Thanks!

wrenn · December 2017

I chose mastectomy to avoid radiation. I worried about the side effects too. Hopefully people who had it will come along.

Olive0716 · December 2017

I'm not far enough out to know if it was a good decision or not, but I skipped rads. My MO and RO were on the same page and advised against it. My tumor was 2.4c with no node involvement and a confirmed pCR @surgery. I had a skin sparing BMX, so that may be more than what you had done, but it still wasn't advised by either doctor.

sanfrancisco2017 · December 2017

Thanks you both! It helps to hear.

azrescue · December 2017

I did have radiation. However, my tumor was large at 5.9 cm with lymph nodes involved, Stage 3. I did have full PCR with carbo & taxotere. I had no cancer of either breast or lymph nodes on final pathology. I met with 2 radiation oncologist after to discuss options. However, both felt I should still have radiation. They offered very different plans. I chose to follow the plan of 30 radiation treatments including the center breastbone area (MD Anderson has done a study on tnbc stage 3 recurrence & radiation to this area was a critical difference). My RO did also use the breath hold technique. I just past my 1 yr since rad's in October. So far, I've not had any negative effects from it. Hope that helps.

AgathaNYC · December 2017

azrescue - thank you so much for your post. I had a large tumor that seems to be responding well to neoadj chemo. I'm going to be meeting with an RO for the first time soon and you've given me ideas to add to my list of questions.

sanfrancisco2017 · December 2017

Thank you everyone: it really, really helps to hear your experiences. H

ventureval · December 2017

Thank you for your post. I have stage 2 triple neg I just had my second chemo round so I still have a long way to go. My tumor is 2.7 and it is already going down. My doctor wants me to have a lumpectomy afterward chemo and then he wants me to follow up with radiation which scares me. I just lost my hair this weekend and that was hard to adjust to, but I have a wig and I dealing with it pretty good. I am still going to work and everyone at work has been very nice and treating me with respect. I have been having problems with the nurses getting entry into my port though. This last time they figured there was a little clot so they had to give me meds to dissolve it before they could draw blood. But, each time I go, it seems they can't find entry to the port until they have stuck me 2 times. I hate feeling like a pin cushion does anyone else have problems with their ports?

sanfrancisco2017 · December 2017

Hi! Congrats on working your way through chemo already! Sorry they keep poking you! Once you find a nurse who is good at it, ask for her or him. I used to alternate the chemo (Taxol) between my port and the back of my hand. THank you again for describing what your plan is...

SA8PG · December 2017

Hi San Francisco

I did not have radiation even though ALL of my drs suggested I do it. I would only agree to it if I did not receive a pcr. So after I received my pathology report back after my Double mastecin December of 2014 it was confirmed it was all gone so I chose no rads. My tumor was large to start with but never in the lymph nodes. I wish you the best in your decision. I am confident that you will do what you feel is best.

Hugs,

sanfrancisco2017 · December 2017

Wow those are nice results and thank you so much!! Enjoy all those beautiful children!!!

A4ggy · January 2018

Hi,

Congrats on complete PcR. I had a 3.7 cm tumor and felt it shrinking after the 1st AC treatment. My drs say they don't feel anything in there anymore, but we won't know until surgery at end of this month. I haven't had scans because I'm doing a double mast. and they can tell it's shrunk a lot and if any left, they are taking it anyway. They seem to feel positive that I could be having a complete response, but I don't know yet. So I've been giving myself breast exams and convinced myself I still feel something in there. Has anyone else had experience like this? Thank you!!

sanfrancisco2017 · January 2018

HI that's great news! I think the docs know what they are looking for when they say they aren't feeling anything anymore. Good luck with the surgery and congrats on making it this far. You are almost there! H

A4ggy · January 2018

Thank you! I am obsessing about getting a complete response. Can the surgeon tell you after surgery or do they need to do the pathology? Sorry, probably a silly question.

sanfrancisco2017 · January 2018

They take everything that they remove and send it to pathology. If I remember it takes about two weeks for that report to come back. It is the microscopic and final analysis. Good luck! H

DoubleBloom · March 2018

Hello,

I also had a pCR and was tempted to skip radiation. Two ROs told me "no you can't skip it!" I'm told that radiation is an insurance policy in case there are any lingering cells after chemo and surgery. I had a skin and nipple sparing mastectomy so I suppose those are areas that cells could be left behind...

I'll begin the first of 28 treatments on March 5, 2018

sanfrancisco2017 · March 2018

I did do the radiation. Good luck with yours. It was a pretty peaceful experience. Many congrats on your pCR!

Anonymous · March 2018

Sanfrancisco, I have PCR (acc to my posted Surgical Pathology report) but haven't met with my BS yet to discuss the results. I, too, have read reports that radiation might help stave off metastasis for TNBC. I am actually considering asking for it if it's not recommended. You said that you did do the radiation. How many rounds did you do?

sanfrancisco2017 · March 2018

Hello. I did an accelerated version of five weeks daily, pressed into three weeks. It seemed painless but the fatigue afterward was similar to chemo. In fact the fatigue has lasted so far, for 6 weeks past the end of radiation. The neuropathy that had faded after chemo is back. There is clearly a divide on whether radiation is needed after a successful chemo: I went with my oncologist's recommendation. But I did feel that I was subjecting my body to a double whammy that may or may not help, and definitely has taken its toll. My ears started ringing on day three, and have never stopped. Pick your favorite doc and do what they say. And the very best of luck to you. You've got this!

maryna8 · March 2018

I did not have radiation after mastectomy and chemo. My oncologist said I didn't need it, but then he retired on the day of my last chemo treatment, and the next oncologist thought I did need it. I was already having a lot of pain in the area and shoulder pain from an injury suffered during chemo, and the radiology oncologist decided the benefits of radiation might not be worth the further pain it could cause. Right decision or wrong? I don't know. Best wishes to all!

maryna8 · March 2018

I did not have radiation after mastectomy and chemo. My oncologist said I didn't need it, but then he retired on the day of my last chemo treatment, and the next oncologist thought I did need it. I was already having a lot of pain in the area and shoulder pain from an injury suffered during chemo, and the radiology oncologist decided the benefits of radiation might not be worth the further pain it could cause. Right decision or wrong? I don't know. Best wishes to all!

jamorcar · April 2018

I had a pCR after chemo, too. Had BMX, and pathology came back clear for nodes. RO says I don't need radiation. Wondering whether I need second opinion or if this is standard?

sanfrancisco2017 · April 2018

IF your RO says you don't need, I"d believe. I went ahead and did the radiation, as recommended but not wholly agreed upon by all my doctors. IT was much harder than the chemo, and the long term effects are very clearly with me. I can't work a full day the way I used to, still have to sleep a lot, and have terrible tinnitus. No one knows how radiation will affect them, but it's the one part of treatment I can't shake. The fatigue means that if I get too tired all my scars hurt and the neuropathy returns. IT definitely affects your whole body and my own RO really didn't want to address that. Congrats on your pCR!

rdeesides · April 2018

With PCR and clear nodes you shouldn't need it. I had an easy time with radiation, but if I were in your shoes I wouldn't worry about doing it

Jennifer522 · April 2018

My RO said radiation if I had lymph node involvement or lymphovascular invasion and I did not. With my tumor being on the left (heart) side, I was nervous to do radiation.

But we were expecting me to get a PCR and I did not. The MRI I had 5 weeks prior to surgery (still had one more taxol after MRI), said my tumor was almost imperceptible but pathology said I had 7mm of cancer remaining. Clean lymph nodes and clear margins. I don't understand the difference between the MRI and Pathology could be that off?

Will see what treatment is next for me when I meet with MO. Maybe Xeloda? I was going to be done if I got a PCR other than reconstruction.

Dmoney · July 2018

Hello Jennifer,

Hope you are doing well and enjoying your summer. I am receiving neoadjuvant therapy and just started Xeloda 3 days ago and am wondering what to expect. I am on 1000mg 2X a day 14 days on 7 off for the next 6 months. I would like to be prepared if I can?

Thanks,

Dina

Jennifer522 · July 2018

I am now at the end of my third round of Xeloda. I take 2000 mg (4 pills) twice a day but I am 5’8” and around 200 lbs. The 14 days on, 7 days off.

So far my side effects have not been to bad. Around day 10 my feet get tender and it lasts till day 16. It feels like walking barefoot on rocks. As long as I am not on my feet, I don’t feel it. This started on the second round

I do have on and off loose BM’s with stomach cramps but not true diarrhea. It’s hard to predict this side effect. It hasn’t been like clockwork with the tender feet. It’s not terrible by any means just something I deal with.

I have taken Imodium twice and a Phenergan for nausea twice. Mainly because I had to be somewhere and didn’t want to chance it.

Dmoney · July 2018

Jennifer,

Thank you! That helps me a lot. I hear all kinds of things and understandably everyone has things that effect them differently. Besides stomach pain and a bit of hot palms mostly on the left side nothing has hit yet.

Cheers!!

triple negative, neoadjuvant chemo, pCr: radiation?

Comments

Categories