Question

solange49

Hi Ladies, I just had my bilateral mastectomy on Monday. My surgeon called me Wednesday with the path results. I had 15 nodes removed with 13 of those showing positive. I had all my chemo treatments before surgery. I knew I would have to have radiation after I healed from surgery...but now I'm wondering if I'll have to have more chemo as well. When I asked my surgeon she told me it would be up to my Onc. My PETscan after chemo showed an improvement of 50%. I knew chemo wouldn't take care of all the cancer....I just didn't expect so many positive nodes. I would appreciate any thoughts/experiences on this,

weesa

Diana,Good that you are hormone receptive--expect to get tamoxifen or an AI for five years. Good that you are grade 2. The current thinking is that number of nodes involved is not as much a prognostic sign as once thought. You don't say how many rounds of chemo you had--did you have 8? I will be cheering for you!

pupfoster1

(((Diana))),

I'm glad to hear your surgery is behind!  Our dx's are very similar, however I did not have chemo first (although in hidsite it probably would have been a good idea).  I had the same amount of + nodes and my primary tumor was 6.5cm (there were smaller ones in the same breast as well).  They gave me the "big guns" 4 rounds e dense A/C followed by 4 of Taxol then 6 weeks of rads 5x week.  When do you see the onc?  I would think they will have  a good idea if more chemo is needed.

Keep us posted!

Sharon

solange49

Weesa- thx, yes I'm thankful to be hormone receptive. . I had 4 rounds of dose dense A/C followed by 4 rounds of DD Taxol. I guess I'm just a little surprised at the number of positive nodes after that much chemo. Thx for the kind thoughts & words. How are you now?



Sharon- wow, our dx's are very similar! I had the same chemo you had as well. I hope I don't have to have more chemo but I'll just deal with it if that's the case. I see my breast surgeon on Nov 1st but will have to wait until Nov. 9th to see my oncologist due to her being on vacation next week. . Thanks so much for replying. How are you doing now? Are you on hormone therapy?

chrishat

hi,

i had the first part of my chemo (4 rounds of AC)  before my surgery and i had no response to it whatsoever. After surgery i had 12 rounds of taxol, then radiation. what i have come to understand is that generally, the higher the percentage of your ER receptivity, the slower growing your cancer is, and therefore the less likely to respond to chemo, which recognizes rapidly dividing cells. my cancer was 97% ER and PR positive. so possibly that could explain why chemo didn't knock it out for you? although a 50% response is good!  but, like weesa said, the great news is that you will take some type of hormone therapy, which is very targeted for us ER+ gals, and we generally respond really well to that.  take care, it's a slog, but you have the hardest parts (in my opinion anyway) behind you..chemo and bilat mastectomy. hang in there!

AnacortesGirl

Getting a 50% response is pretty good for ER/PR+.  Unfortunately I had no response.  And I totally understand what it's like to find out more lymph nodes were involved.  We thought I had 3, maybe 4 involved.  Ended up 14 out of 17.  Pretty disappointing news.  But that's what the lymph nodes are there for so they did their job for us.

I'm guessing your onc probably won't do more chemo unless you insist.  I had a trial onc and my regular onc.  It was the trial onc that pushed the idea that I needed to do more chemo after rads.  She felt with the no response, BRCA 2 and grade 3 that it would be prudent.  My regular onc didn't agree at first.  My scans were clear and no symptoms so he felt it was just a shot in the dark to do more chemo when there was a possibility that there were no cancer cells to kill.  After he thought about it and did some research he changed his mind because he found research that said the platinum chemos worked well against BRCA cancers. 

Bottom line is that I was supposed to do 12 weekly rounds of low dose carboplatin.  Three weeks into the chemo and we started seeing my blood counts drop.  I made it through 5 rounds before I got a cold that turned into a nasty sinus infection with my low white counts (even neupogen wasn't bringing them back up).  Other than my bad counts, I had no SEs to speak of.  Very slight nausea but nothing compared to the regular chemo.

weesa

solange, I had DD a/c and DD taxotere. Dose dense was very much in its infancy when I had it. I have been very well ever since, despite a rather ragged time of taking AI's with lots of side effects and time-outs.I am not good about diet, exercise, supplements drinking, or any of the other things I should be doing. In  fact, I once started a thread here about what a slouch I was! So take heart, and let us know if you need more chemo.

pupfoster1

Hi again Diana,

I have been on Tamoxifen for about a year and a half now with no super serious se's, although I've been having bad hip joint pain lately.  Hard to tell if it's from that or just my 49 year old body getting some arthritis.  I'm doing OK most days, but still in somewhat of a funk as of late.  Not wanting to get up and get going in the morning.  Sleep is so nice. But I used to be SUPER active, working out almost every day, etc.  So somehow someway I need to find that in me again so I can find a way to move on.

Feel free to PM me anytime.

Sharon

jennyboog

Congratulations on getting surgery behind you, rads were much easier and you're moving on.  I'm probably no help with your question but I can tell you what I did, it will be what your onc recommends and what you want.  I didn't do any chemo after surgery, my scan after my BMX showed nothing else and they considered my chemo successful.  My onc decided due to clean margins and tumor shrinkage that I was ok and we might need to save the chemo for the future, just in case I need it later.  There is a life time dosage amount on the AC but I'm not sure what it is exactly.  Good luck with the rest of tx and let us know what you're doing next. 

Kay_G

I had 4 rounds of DD AC and was supposed to get 4 rounds of DD taxol, but was allergic, so switched to Taxotere and Herceptin before surgery.  I had a good response to the chemo, but had two small pieces of cancer that they suspected were from lymph nodes, but no lymph nodes despite having a Level two ALND.  I asked onc about it and she said my lymph nodes were probably in another area and if there was any cancer in them the radiation would take care of it.  So I feel pretty unsure and scared about the state of my lymph nodes.  The BS said the chemo probably destroyed the lymph nodes and I just didn't have any.  Another doc said the lymph nodes might have been destroyed by the high doses of steroids I was on from the allergic reaction to taxol.  Who knows, but I definitely feel the same way about being scared about positive lymph nodes, especially if they are still in there after surgery.  I don't think the onc realizes she made me more nervous than I was before the surgery.  Not sure how large my biggest tumor was before chemo, MRI said 4.5 cms, but the docs were measuring it larger.  MRI didn't show it at all before sx, but the pathology report still found it and it was 1.2 cms.  Good luck and I am very interested in what you'll be doing as well.  I am also ER+ and also will start Tamoxifen in a few weeks.  I am only 40% positive, not sure if that's considered a lot or not.  Also, my tumor was grade 3.

KiwiMum

Hi Diana.  I too remember the shock I got post surgery when they told me I had 12/24 positive nodes.

I had adjuvant chemo (post surgery). 4 x AC and 12 x Taxol weekly.  I am in my 2nd week of radiotherapy and 3rd week of Tamoxifen.  What a year it has been!

I am thinking of you. Please post back and let us know what your onc says.

PlantLover

Diana - I had chemo (TCH x6) before surgery with an excellent response. The tumor was difficult to even feel in my breast after chemo & prior to surgery.  However, they discovered  micromets in 3 nodes and my onc recommended 12 rounds of Navelbein after radiation.  I followed his recommendation without hesitation.  As someone mentioned, Rads should take care of the cancer in the nodes but radiation could not effect any cells that might have escaped to the rest of your body.

Good luck & please let us know what the doc recommends!!

solange49

Thank you guys so much for your response! I had follow up visit with my Onc after my BMX this morning. She told me what I didn't want to hear. Since I had so many positive lymph nodes she said I would need more chemo. I had four rounds of A/C followed by four dd rounds of Taxol prior to my surgery. Now I have to have eight rounds of Gemcitabine/Carboplatin before I can even begin radiation. I know it could be alot worse but I am so bummed out by this news. I really hoped I was through with chemo. Have any of you ladies been on this chemo cocktail? What can I expect now? I'm so sick of this! Hugs in advance for any comments.



Diana.