Surgery after Neodjuvant Chemo shrinks LARGE tumor

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AgathaNYC
AgathaNYC Member Posts: 473

Hello.

When I was diagnosed my tumor as large. Different imaging and physical exams lead us to believe it's was about 7cm. I just finished 4 treatments of AC and am about to start 4 x DD Taxol. As of now the tumor has shrunk a lot and hopefully will more with the Taxol.

I'm not scheduled to meet with my breast surgeon again until Dec 1 when I start the Taxol so won't have my zillion questions about surgery options answered until then. I'd love to hear from anyone who had a similar experience of large tumor before me.

- If your tumor was initially large but responded to neoadj chemo is there less that has to be removed or will there be a big amount of necrotic matter that has to come out?

- Were you able to have a lumpectomy instead of a mastectomy?

- Anything specific you would suggest I discuss with my surgeon?

- What radiation treatments did you have?

The unknowns of surgery/recovery/radiation are worrying me so much more than the chemo. Maybe because I've had more time to think about it after diagnosis.

Thank you to everyone on these threads for so generously sharing your experiences. It is so incredibly helpful!

Comments

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2017

    By every imaging modality, my tumor was 2.6-2.8 cm. It disappeared during NAC - I couldn't feel it and imaging confirmed that. However - the BS's plan was to take the same amount of tissue out as originally planned.

    I chose the BMX for several reasons. I was able to avoid radiation in my case. I didn't want to continue to monitor things in the other breast. I didn't want to have to have surgery on both sides for a decent cosmetic result (had smallish breasts).

    Getting chemo first and having time to make decisions is a double edged sword. I went through all of the chemo with the plan of doing the least amount of surgery. And then I changed my mind. It's a tough decision with lots of variables and no guarantees.


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2017

    Hi!

    My lump was 5 cm+ and I had one compromised node. After AC+THP, an MRI and PET scan showed that there was no active cancer left in the breast or node. I opted for a lumpectomy, and the surgeon took a golf ball-sized amount of tissue out of my affected breast. The pathology report showed that the active cancer was gone, but that I'd had a tiny pocket of Grade 3 DCIS left over from chemo.

    I was happy to have a lumpectomy because I did not want to do reconstruction. My right breast is a bit smaller than my left breast, and there is a scar where the tissue was removed. However, I do not feel deformed.

    I did end up doing six weeks of radiation to my breast and nodal area. It was OK. My right breast did turn pink, and it felt like I had a sunburn. But, that cleared up a few weeks after completing radiation.

    I should add that I was a C-cup to begin with, so I don't really miss that golf ball-sized amount of tissue. If I'd been an A or a B-cup, it might have been different.

    Good luck!

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited November 2017

    Thank you both for sharing. When I first got my diagnosis I was adamant I wanted a DMX. Now I have swung to hoping I can have a lumpectomy. I just don't know if that's going to be possible or not with the original tumor being so large.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2017

    Agatha,

    Will your doctors order an MRI and/or PET scan after chemo is done? Those scans might give you an idea of how much is left (if anything) of the tumor. I noticed that you were Grade 3 (like me). Chemo often works very well for Grade 3 cancer; let's hope that's the case for you!

  • rainnyc
    rainnyc Member Posts: 1,289
    edited November 2017

    I had a large tumor and one node: I received neoadjuvant Taxol combined with Herceptin/Perjeta. The combination was quite effective, and the pathology report after my BMX indicated NED. Because the tumor was aggressive, I did have radiation: five weeks, 25 treatments. The original plan was to have AC after the surgery, but based on the pathology report, the MO decided not to go ahead with that, which certainly made me happy.

    My situation was different because of being HER2+, but I also was diagnosed as Stage III, so I wanted to be sure everything possible was done at the outset. Good luck! Where are you being treated?

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited November 2017

    Hi, RainNYC. Thanks for posting. It's encouraging that a 5cm tumor went to NED from neoadjuvant treatment. I'm being treated at Sloan Kettering.

    Hi, Elaine - From imaging I've been told they don't expect any lymph node involvement, but the tumor is slightly touching the chest wall. The hope is that it will peel away with the chemo. I don't know yet what tests I'll have after chemo.

  • rainnyc
    rainnyc Member Posts: 1,289
    edited November 2017

    Agatha, I'm at MSK as well. One thing I really appreciated in the early days of my treatment is that they do have an active tumor board, and I knew my case was discussed by a number of people. That made me more confident in going along with their recommendations.

    One thing: it's still early days. I know those first few weeks are a whirlwind. Try not to feel you need to make any decisions yet; among other things, as you know, it will take a little while to see how well your tumor responds to the chemo. But from your first post, it sounds as if the news is encouraging!

  • frozentoes
    frozentoes Member Posts: 58
    edited November 2017

    Thank you all for posting. It is reassuring to read your experiences. I'm just starting with chemo but the goal is to shrink the tumor and get rid of the lymph node involvement. Originally, I was a bit skeptical because everyone I had talked to (granted, a limited number of people) had surgery first and then additional treatments. After researching my options and further discussions with both the MO and BS, I decided to go the neoadjuvant route. Tomorrow is week #2 of 12 Taxol so thank your for the continued inspiration!

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited November 2017

    Hi, RainNYC - nice to meet a Sloan Kettering sister! I agree, I do feel reassured by the team approach they take there.

    Hi, FrozenToes - Good luck with your Taxol treatments. I start in 2 weeks - but the dose dense program.

    I know that I'm just going to have to wait the 10 days for my next surgery consult, but I can't seem to get off the anxiety hamster wheel re: surgery.

    Also, I have very large breasts. Does that impact whether or not lumpectomy is on the table?

    Thanks EVERYONE!

  • illimae
    illimae Member Posts: 5,710
    edited November 2017

    Mine was 5cm and I completed 5 months of Abraxane, Herceptin and Perjeta with the tumor shrinking to just a small cluster of cells. Starting with DD breasts, a lumpectomy was recommended with a lift and reduction on both to match (one OR, two surgeons). I ended up with D's and clear margins. I'm happy it was all handled at once, I wouldn't want multiple surgeries. Breast radiation followed, 30 sessions.

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited November 2017

    Dear illimae - thank you for posting. it's encouraging - the surgery you described is what I hope I can do. may i ask if you were able to keep your nipple with your surgery?

  • illimae
    illimae Member Posts: 5,710
    edited November 2017

    Agatha, yes, both nipples were saved, moved up a few inches and have their usual feeling/sensitivity. If the cancer is located directly under your nipple, saving it all may be more difficult but it worked out very well.

  • jojo2373
    jojo2373 Member Posts: 662
    edited November 2017

    Hi Agatha,

    Although mine was described as around 2CM before surgery, it was actually multiple tumors over a 4CM area. I started with D size breasts and had DD AC & T as well. I wanted a lumpectomy from the beginning and got one. The surgeon took out the 4CM area and 3 nodes via one 3 inch incision on the left side of my breast. I followed up with radiation, but today if looking face on you cannot tell any difference between my breasts. My scar has faded and looks barely noticeable. I did not however have a complete response and had scattered cancer in my breast and 1 node with remaining macro mets. Best of luck to you.

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited November 2017

    Dear Illimae and Jojo - I can't tell you how encouraging your stories are. Thank you so much for replying!

  • Flynn
    Flynn Member Posts: 307
    edited November 2017

    HI again, Agatha. I already mentioned my surgeons opinion on lumpectomy in your other post. I was told by the same BS that they consider radiation on any tumor that originally measured greater than 5cm to be standard care. So apparently I'm signing up for that, too. I hope your appt goes well!

  • Newnorm
    Newnorm Member Posts: 100
    edited January 2018

    Hi AgathaNYC

    This response might be a little late but I had a massive tumour... 8cm. After neoadjuvant chemo they couldn’t see it on MRI, mammogram or ultrasound. So I opted for a lumpectomy. Sadly there was still residual cells there. So I then had a mastectomy. And pathology showed there was a lot of residual cells. It was like Swiss cheese.All inactive, but still they were there and undetectable on screening. My lesson was that there can still be cancer that doesn’t show up on any screening.

    My onc recommended a mastectomy. He said, “why wouldn’t you want all potential cells in the bin!” And so I did. They got clear margins, so that was my positive. Good luck.

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited January 2018

    Hi, Newnorm - That is interesting that there were residual cells throughout - not seen on imaging. I want to be realistic as I finish up chemo. I am switching breast surgeons so I will definitely discuss this possibility with her when I have my first consult.

    Thanks for finding and replying to my older thread! It's definitely never too late to share info :-)

  • Newnorm
    Newnorm Member Posts: 100
    edited January 2018

    Glad to help Agatha NYC. I also sought out a second opinion regarding surgery. I wanted to be sure that mastectomy and ALND was the right thing to do. In the end as it happens only my first level lymph nodes were involved but they took the lot. Now I’m living with the constant cloud of lymphodema and I have terrible and sometimes painful cording. But so far so good. Good luck. Xxxx

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited January 2018

    Newsmom - I am very concerned about the possibilities of lymphoma. I'm sad to hear you have cording that gives you pain. I'm trying to read up on what the lasting effects of surgery can be. I hope you get relief from them.

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