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Surgery after path complete response

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Optimistic_Missouri
Optimistic_Missouri Member Posts: 24

Has anyone with lymph node involvement reached pCR following neo-adjuvant chemo? If so, how does the surgeon decide how many lymph nodes to take? I know that I have one involved but until the surgery, I don't know how many others are/were infected. I know they'll want to remove the known node. Say I have three that are cancerous right now, they would want to remove all of those. But if the chemo works there won't be any cancer left in any of the nodes. Do they take a certain number to be on the safe side?

Also, I haven't met with a radiology oncologist yet. Is it common for those who have reached pCR to have radiation following surgery? I'm planning a bilateral mastectomy and the tumor is not close to my chest wall.

Thanks in advance!

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  • minustwo
    minustwo Member Posts: 13,116
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    Nope - I didn't have pCR after the neoadjuvant chemo & had to have more chemo after surgery just to make sure. Sorry I can't answer your request. I would have had radiation one way or the other since I was HER2+. Hope someone else has more info.

  • redkitty815
    redkitty815 Member Posts: 18
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    A lot of this depends. Your surgeon should put a tracer dye to identify your sentinel nodes and pull those (as well as see if your positive nodes are your sentinel nodes or further in your system). You won’t know if you have PCR until after surgery/pathology. I did not and my surgeon took 12 nodes. My mom had no positive nodes, but there was a problem with the tracer dye uptake and her surgeon took 11. All that said, most surgeons look to take as few as possible.

    If you had cancer in one or more nodes, it is likely that radiation will be recommended even after a mastectomy. Evidence shows there is a huge reduction in local recurrence rates for high risk (ie: node positive and/or large) cancers if you do radiation after mastectomy.

  • sarah_78
    sarah_78 Member Posts: 119
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    I just had lymph node dissection last week after neoadjuvant chemo (6xTCHP). I won't know if I had pCR until next week when pathology results are there. I asked how many lymph nodes were to be taken, from what I understood it depends on where your primary positive lymph nodes were, as much as seen from the screening. I had 3 suspicious looking lymph nodes, all in Level 1, so surgeon went ahead and picked what looks like enlarged on that level, which was about 7 nodes. I know they pick up about 10. Also I wasn't injected a dye, mine wasn't a sentinental node thing, it was dissection (ALND).

    Radiation: Once you have a confirmed lymph node involvement (such as core biopsy before chemo or pathology after surgery), afaik they recommend radiation. That is unless you had radiation to that site before like me, then the risk of side effects outweigh the benefits I am told.

  • Optimistic_Missouri
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    Thank you for the information. That makes total sense. I was thinking I would have an answer on pCR prior to surgery, based on the imaging, but since nodes don't show up properly on imaging, I would have to wait. To bad my surgeon can't look at them under a microscope while I'm under to figure out exactly how far to go! I know they said if I don't reach pCR the doctor said she will have me take Xeloda. But I'm guessing that will be after surgery then.

    I did have a needle core biopsy on 1/21 and it confirmed cancer in the breast and lymph node. So it sounds like I will need radiation. But it sounds like maybe they can just do it and the lymph node area and not the chest wall. I will do whatever they want me to do, because I want to beat this. My concern with radiation is the fact that some of my chemo drugs will be hard on my heart. And I'm not sure if radiation will cause additional damage.

  • Optimistic_Missouri
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    I've heard of the tracer dye, I just wasn't sure if it would still work if the chemo got rid of the cancer there. Redkitty815, have you had issues with lymphedema following the node removal? I'm not sure what to expect. Some people seem to say it's not a big deal and others have long term issues.

  • minustwo
    minustwo Member Posts: 13,116
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    Optimistic - I did know from imaging that I didn't reach pCR before surgery. Just not the extent..

    Yes lymphadema is a life time risk - from surgery, radiation or any other damage to the lymph flow paths. It's a big deal if you get it, so precautions are important. Some people luck out & never get it. Some people have their first occurrence even 30 years later.

    Here is a trusted site this will give you lots of good info. http://www.stepup-speakout.org/


  • norcals
    norcals Member Posts: 206
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    Optimistic-Missouri,

    My initial biopsy showed IDC in lymph nodes. The MRI prior to surgery showed complete “imaging" response from neoadjuvent chemo. During my lumpectomy, the surgeon first performed a sentinel node biopsy (using dye to locate the sentinel node). The sentinel node was sent to the lab while the lumpectomy was performed and one node was positive, so the surgeon moved forward with the ALND. This was all done during one surgical procedure. I have read on this board that others have had two separate procedures.

  • lw422
    lw422 Member Posts: 1,399
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    The answer is, "it depends." Most doctors have their own ideas, or it may change once the surgeon gets in there. My cancer was IBC and I had a pCR... but still had to have ALND (32 nodes removed... NO cancer in ANY OF THEM.) That is just the Standard of Care for IBC, so another short straw I drew. I was so freakin' bummed to have that many nodes removed, but I'm still alive so there's that.

    I also had rads to clavicle, chest wall, and axilla due to IBC. It was hard but worth it.

    Good luck to you.

  • threetree
    threetree Member Posts: 1,356
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    I did not achieve pCR, but I had ER/PR+ which rarely gets a pCR with neoadjuvant chemo. My tumor did shrink down some though. My initial diagnosis was that it did not appear to be in any nodes, but later the surgeon said that on the MRI one node did look a little swollen. (His clinic partner has since told me that it is not at all unusual for anyone to have one swollen lymph node in an arm pit at any given time.) At the time of surgery the surgeon did the blue dye and removed one sentinel node that was cancer free. He did not go on and do any more, because he wanted to spare me worsening lymphedema. My initial tumor was large, about 5.5 or 6 cm and that alone had started to mess up my lymph system and I had already developed some lymphedema before I was even officially diagnosed. It was caused by the tumor.

    He worked at the university teaching hospital where I had part of my treatment. My oncologist and radiologist work for the local cancer center that has a small branch there at the university hospital. They have their own surgeons that they had a meeting with, and the cancer center surgeons all seemed to think the university surgeon should have done more. They were "up in arms" about the fact that he hadn't taken more than just the first sentinel node. Also, they say that the dye doesn't take up as well after neo adjuvant chemo and that that could have posed a problem, i.e. I might have had positive nodes that didn't light up from the dye. The university surgeon I had is well known in the area for being "top notch" and is on everyone's list of "best surgeons" in town, etc. I told some of the staff at the hospital about the controversy and they all said there was no question in their minds which opinion they would have bought into, meaning they thought they too would go with what the university surgeon recommended about not taking more nodes.

    To this day (2.5 years later) I still get flack from the radiologist and the oncologist about how we just don't know what the state of my nodes really was/is since he didn't take more like the cancer center surgeons would have. Well, the university surgeon that I had was older (retired now) and had years and years of experience under his belt, and most of the surgeons at the cancer center are much younger and rely almost exclusively on numbers and data, and do not put much "gut" "intuition" or "art" into what they do. Same for the oncologist and radiologist. I think in my case there was a real generational difference in approach.

    I've rambled a bit I know, but my point is that I think different surgeons take a different approach and that there is more than one way. Mine did all he could do to spare worsening lymphedema problems, while others would have taken more nodes and left me to the lymphedema people to deal with any aftermath. (I do see a lymphedema specialist for what I have, but so far it has remained mild, and I can only wonder what it might have become, had the surgeon done an ALND.) I am happy and satisfied with the way things went and have no regrets. I also think the radiation that I subsequently had did make the situation somewhat worse, so can only assume that had more nodes been taken, it would be even worse.

  • elainetherese
    elainetherese Member Posts: 1,627
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    Good question. I had a PET scan and MRI after chemo, which showed that ALL the active cancer was gone in both the breast and compromised lymph node. While a node had tested positive for cancer (via fine needle biopsy) before chemo, my surgeon had never inserted a surgical marker in the node. So, when surgery time came around, he did not know which node it was. End of the story: My surgeon took out ALL of my Levels 1 and 2 lymph nodes, or a total of 20. None of them were cancerous.

    These days, I expect that the surgeon would have just removed the sentinel node(s) and I would have had radiation directed at the lymph area. But, seven years ago, ALNDs were much more common and that's what I got. Luckily, I never developed lymphadema.

  • threetree
    threetree Member Posts: 1,356
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    As if I hadn't written enough already above, a slight addition: In a similar vein to what ElaineTherese said above, my surgeon who didn't take any more than the one sentinel node, told me that "back in the day" they would sometimes take as many as 50 nodes and the lymphedema risk rate was sky high - way over 50%, maybe 80%? Just can't quite remember the number he gave other than that it was shocking. He said they developed a new technique that let them take far fewer nodes in an ALND and that that had cut the risk of getting lymphedema down to around 15-20%. He said it was so much better then and that he did not understand why the trend now is again to start taking every node you can think of. He didn't see a reason for it at all. He also told me it could cause my arm to become as big as my leg, and that if that happened, I would have far more trouble than I would have if some nodes got missed. He said that radiation should pretty much take care of the node problem, i.e. better to leave the nodes and get radiation, than to remove tons of nodes.

    My sense is that the current younger doctors just want every single node they can get to check for cancer, so that their data and numbers are as exact as possible. It seems to just be data, data, data with them, even if it causes more trouble down the road.

  • ZephyrCA
    ZephyrCA Member Posts: 7
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    I had pCR following neo-adjuvant chemo, but only found out post surgical pathology report. I only had one known lymph node involved as I was pregnant at the time and could not get any scans. As Redkitty815 says, your surgeon uses a dye to find the sentinel node and pulls those. My surgeon decided to err on the side of caution and took 11 lymph nodes out, two of which showed signs of previous cancer. It is common for those with lymph node involvement to have radiation following surgery as it also radiates the collarbone lymph nodes. As for life post-lymph node removal. My surgery was in October and my armpit is still tight and sore, but my mobility is much better. I do have nerve pain/damage but my surgeon said it will get better in a few years. For now I do not have lymphedema as I immediately went to a physiotherapist (who specializes in breast cancer patients) who gave me recommended exercises.

  • minustwo
    minustwo Member Posts: 13,116
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    Interesting discussion. I like what ThreeTree said about an older surgeon who had reams of background knowledge and could make "artistic" judgements.

    I've been working on finding younger docs since many of mine are retiring. It's a balance. The older docs have the experience and the newer docs have the most recent knowledge.

  • threetree
    threetree Member Posts: 1,356
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    Minus Two - I think it's a hard call between the younger and older doctors. Like you said, the new ones do have the latest info and the old ones have the experience. The older ones though, do go to continuing ed programs, so they should be up on the latest also. Maybe the answer is more of a "middle aged" doctor where they aren't ready to retire, but they've got some good years under their belts too.

  • Optimistic_Missouri
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    I just got a chance to log back in and I am WOWED by the awesome and detailed responses. I must admit, I'm getting ahead of myself thinking about a pCR outcome. I have TNBC and with the regimen they've set up for me, I have a 64% chance of pCR. I'm trying to think positive, with the understanding that I very well may be in the 36%.

    MinusTwo – thank you for the link. I will make sure to look up that website. And I agree, the discussion regarding older surgeons with experience and younger surgeons with being more knowledgeable about current trends. My Medical Oncologist is a little older and was going to put me on a standard chemo plan that he's used for years. It might have been sufficient and have fewer side effects. I went with the recommendation from the MO at the Cancer Center. I haven't had a chance to talk to my MO back home since that visit. I'm curious why he didn't recommend the newer plan – whether he was unaware of the study, or if he had some other reason, such as difficulty getting insurance to approve it. I'm having an awful time getting anywhere with insurance and my chemo has been delayed twice now. I call insurance and they say they're waiting on the doctor. I call the doctor and they say they're waiting on insurance. It leaves me stuck in the middle, and without the treatment I need.

    NorCalS – Are you saying they received the pathology back while you were still in surgery? Like there was someone there to analyze it ASAP rather than waiting 2-3 days for it to come back from the lab?

    LW422 – I think your response of "it depends" is greatly on point. It appears the ladies here have had varying experiences. And I know no two cases are exactly the same. Different patients, different degrees of cancer, different providers. It sounds like I might need to wait and see. I hate that for you – getting 32 notes removed and finding out it wasn't necessary.

    ThreeThree – I don't take your posts as rambling at all. They are very detailed and informational. It's good to have providers you trust. I'm in the same boat in a sense. I went to Siteman Cancer Center on Monday and they're the ones that set up me up my regimen. I went there because they are in a bigger city and are affiliated with a university, so I thought they might have more cutting-edge research. I haven't seen a radiation oncologist at either location, but in the short conversations I've had with 3 different doctors, it seems like they have differing opinions. It makes it difficult to know who to trust the most. Thank you for sharing your experience.

    ElaineTherese – I also know that I have a positive node due to the needle core biopsy. It sounds like I'm lucky that they put a marker in mine. 20 lymph nodes seem like a lot. And all of that for nothing, since they were non-cancerous.

    ZephyrCA – this is probably a silly question, but how did those 2 notes show sign of previous cancer? Can the surgeon tell that just by looking at them? I've been referred to PT following surgery. I assume that's similar to your physiotherapist. Glad to hear you haven't had to battle lymphedema, I hope it stays that way!

  • norcals
    norcals Member Posts: 206
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    Optimistic,

    Yes, during my lumpectomy, they took out the sentinel nodes (4 nodes) first and sent it to the lab. Then they proceeded with the lumpectomy. The lab found one node to be positive and it was communicated to the surgeon, so they proceeded with the ALND (so another 4 nodes were taken out). The cancer center I went to uses this method. I have not had any lymphedema in the arm, but I did have some swelling I around the trunk (back and sides) about 6 months after radiation. The MO and lymphedema specialist attributed the trucal swelling to the extensive radiation I received. I got physical therapy (3 treatments) and I haven’t had any problems.

  • elainetherese
    elainetherese Member Posts: 1,627
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    Yeah, 20 nodes does seem to be a lot. But, what's interesting about lymph nodes is that we can have only a few Levels 1 and 2 nodes (say 7) or we can have a lot (say 32). I just happened to have 20!

  • threetree
    threetree Member Posts: 1,356
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    Optimistic - Glad you found something of what I wrote worthwhile. Hope it helps in some way. Yes, sometimes there seems to be as many opinions out there as there are doctors. I feel good though, knowing that I went with the one with the great reputation and who all the hospital staff went to themselves, along with referring their family and friends. You might want to see who staff have the most faith in if you can wrangle that sort of information out of them. It's not always easy. Wishing you a plan that you are really comfortable with and lots of luck!

  • Overcomer-in-the-fight
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    Optimistic-

    I have stage II L TNBC and was placed on what might be the same regimen as you with a 64% chance of Pcr. It’s based off of study Keynote 522. I finished my last dose of chemo yesterday and will have surgery in March 18th. I had one sentinel node biopsied and it was positive. My surgeon said he is going to probably need to take 4-6 dental nodes. I will most likely still need radiation on my lymph nodes after surgery. My MO and I are very hopeful and optimistic for a Pcr. I am still undecided if I will have a unilateral or bilateral mastectomy. Any thoughts would be appreciated

  • Optimistic_Missouri
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    Overcomer-in-the-fight -

    Yes, that is the same regimen. I started chemo Monday. I have Pembrolizumab, paclitaxel and carboplatin every week for 12 weeks. Then I switch over to the AC combo, with Pembrolizumab. I'm not sure whether that will be will be weekly as well, as they want to see how I do on this first round. Then I'll have surgery, radiation if I need it, then 27 more weeks of Pembrolizumab (every 3 weeks). Speaking of which, I saw my first bill today - over $33k for the pembro alone. I sure am glad for insurance!

    I'm so happy to hear you made it through chemo and have a surgery date! From what I hear, you've made it through the hardest part. I also had a positive node biopsy, but I'm not sure how many they'll remove and whether I'll need a SLNB or ALND. Or whether I'll need radiation after that.

    I met with my plastic surgeon yesterday. I have a benign cyst on my right side, and the malignancy is on my left side and lymph. However, I'm planning to go ahead and have both breasts removed. I won't know until later whether they can put the implants in on that date or if I need to start with spacers. I'm planning for silicone/ over the muscle. I learned about alloderm for the first time yesterday too. For me, the flap procedures seems too invasive. For any reason the implants won't work for me, I plan to just go flat.

    If you don't mind me asking, hope many weeks of chemo did you have, and hour long did it take to lose your hair? I've held off shaving mine for now, but I plan to do so as soon as I start to see it shed.


  • Overcomer-in-the-fight
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    optimistic-

    I had weekly paclitaxol and the carboplatin and pembro were in conjunction every 3 weeks as per the study for a total of 12 weeks, then I switched to the ac combo every 3 weeks for 12 weeks. I tolerated both regimens very well, but the second 12 weeks is a little more rough. For me it was nausea for the first 10-12 days and the fatigue was even more noticeable. I found that the nausea was best controlled by eating small snacks about every 1-2 hours. It was mostly due to an empty stomach. I also kept water and a chocolate milk in my mini fridge near my bed for when I woke up.

    Interesting! I also had a benign cyst in my right breast! I’m still debating, I initially thought bilateral mastectomy, but am now reconsidering it as the date gets closer. I agree with the flaps being too invasive and my plastic surgeon actually recommended against them for me in particular. I will have to have tissue expanders and then silicone implants after about 4-5 months. My PS only uses mentor brand.

    I started losing my hair the day after my 3rd taxol treatment, so on week 3. It started slowly but then chunks. I ended up being able to hold off the shaving for a week. I did cut mine short prior so when it started shedding it wasn’t as dramatic. I made the mistake of having it buzzed off first. The actual buzzing did not hurt but my scalp was so sensitive that any touch to my hair hurt. So I went to a barber and had it shaved clean. That was so much better!

    I don’t mind any questions. If anything comes up I’m happy to share my experience. May sound strange to some, but I am very thankful to my Heavenly Father for this challenge. I have learned so much and grown into a stronger and better person, friend, wife, sister, nurse and mom! Remember, Without struggle there is no victory!! You got this!!!

  • Optimistic_Missouri
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    Overcomer-in-the-fight - I love your positivity! I'm definitely not to the point where I'm thankful for my challenge. I try to focus on the fact that I caught mine fairly early. And the fact that there are treatments available. Part of that is for to the brave women who can't before me with this nasty disease and went through clinical trials, etc. And I'm super lucky to have friends and family to support me on my journey.

    Did you keep your head clean shaven during your whole treatment? Or does any of it try to grow back at all?

    Also, you mention that your implants will be 4-5 months after the expanders. I assume that's because of the radiation? And you'll get the implants before starting the adjuvant Pembrolizumab? I've wondered how that would work. If I can't have immediate reconstruction with implants I wasn't sure if I'd have to wait until after my immunotherapy is completed next year to switch from expanders to silicone.

    I'll have to make sure I keep snacks around like you did. I wonder if the reason the second round is harder is because it's every 3 weeks (bigger dose). Did you have a break between round 1 and round 2?

  • minustwo
    minustwo Member Posts: 13,116
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    Optimistic - expanders are usually placed at the mastectomy before radiation to keep the skin/space available for exchange to implants down the road.

  • Optimistic_Missouri
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    Thank you MinusTwo. I understand that part. I'm more curious about timing. This regimen we're on calls for another 27 weeks of immunotherapy following surgery (and radiation, if needed).

    I guess what I'm wondering is if the swap from expanders to implants comes before or after we start back up on the Pembrolizumab.

    Smile

  • minustwo
    minustwo Member Posts: 13,116
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    sorry optimistic - can't speak to that. It was 7 months between my BMX and my exchange but this was before my recurrence to I didn't have any chemo or rads to deal with. Just slow expansion.

    BTW - who is "we"? Do two of you have the same diagnosis & treatment regime at the same time?

  • Optimistic_Missouri
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    MinusTwo -

    That's okay if you don't have an answer. I'm sure I'll find out when my time comes.

    Yes, Overcomer and I are both on the Keynote 522 regimen that was FDA approved for TNBC last July. She's further ahead then me in her treatment, as she's completed chemo, while I just started mine on Monday.