Neoadjuvant TCHP - Post Results Here

13031323436

Comments

  • lilych
    lilych Member Posts: 176

    All,

    If MRI result (after Neoadjuvant TCHP) indicates tumor is resolved and nodes are clean, is surgery and/or SNB necessary?

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    Yep. That was my case exactly. I actually had a radiologist ask me what was next and when I said surgery - she asked why I needed surgery. I have to say that it lessened my faith in her.

    Unfortunately - you can never completely rely on imaging results. There could be cancer cells that don't show. And there is still the "environment" present that allowed them to grow in the first place.

    I wish there were research studies that addressed this. I never found any and I don't know if I would have been willing to refuse surgery and wait and see. But it sure was tempting.

  • lilych
    lilych Member Posts: 176

    NotVeryBrave, thank you so much for your input. I actually just found an article with a tile of "Can cN0 and pCR limit axillary surgery in some breast cancer patients?"(https://www.mdedge.com/oncologypractice/article/16...) but it still says: "findings do not alter the current standard of care; that still calls for breast and nodal surgery after NAC".

    Are you still using the same RO? Happy


  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    I saw a RO in the beginning. My SNB showed no cancer and I didn't require radiation so no further contact with them.

    The radiologist that I was referring to was the one that read my post treatment MRI, mammo, and US imaging.

    I would always recommend limited axillary surgery. If the SNB is positive, they can always go back and take more.

  • Khanniganslp9
    Khanniganslp9 Member Posts: 20

    hi Lily, you ask an interesting question. My feeling is that they HAVE to go in and see with their own eyes what is and was there. After neoadjuvent chemo, I had an MRI and it shows NED. And on breast exam the marble sized round hard tumor had flattened out and was almost impalpable. We figured at surgery they would confirm my NeD status and that what we were feeling was just dead cells or residual “scarring”. Because my tumor had been just 2cm I went into surgery with the plan that I would not need radiation. I went into surgery with a “resolved” tumor. As it turned pathology showed a huge 6cm tumor still alive and well. I did have SLN done at the same time and it came out negative- but they cautioned me that I could have been a stage three not a stage 2, and that my nodes could have had cancerous cells BEFORE chemo.

    What I learned: I should have demanded a SLN biopsy BEFORE chemo so my staging was would have been accurate. By not doing it before I forever lost that info as to whether the tumor had spread to my nodes.

    Also, on a side note, if after surgery I had had a tumor under the size of 2cm and still opted for at least a single mastectomy, I could have avoided radiation and it’s horrible side effects. In the moment back then in 2016 I thought the chemo was the worst and that surgery and radiation was a snap. But now, 2 years later, the chemo and its side effects are gone and just a distant memory, but radiation effect live on and are pretty significant: including damage to all my cells on my left side including all the way through on my back (pain and tightness, and frequent upper back muscle spasm on that side. My range of motion on my left are pretty significantly restricted. Also because of the radiation my implant failed and is rock hard and bumpy and noticeably higher than the other implant (I’m having corrective diep flap surgery in January 2019- yay). To this point my only advice to you or future women faced with mastectomy vs lumpectomy, it would be to seriously consider doing what they can to avoid radiation altogether.

    I also wish my PS had really stressed all of my reconstruction options before surgery and that I had gotten outside opinions. He pretty much downplayed DIEP as a viable option so we only considered implants. I’ve now- 2 years later- gotten other consultations including at my old PS’ office with the DIEP “expert” in his office. She also discouraged me from doing the corrective flap. What I realize now is that they do that because they only do them very infrequently and quite frankly aren’t very good at them. Her office does them just 2or 3 a month or 30 a year, with 5 plastic surgeons, her as the lead DIEP surgeon and the others only as a secondary PS. My new PS at UCLA, Dr Charles Tsenf does them all the time, 80 to 100 every year, and he has a 1% fail rate, and his work is amazing a true artist, considering what he is working with. Bottom line, I wish I had done DIEP surgery at the outset, instead of now after two other surgeries!

    Best of luck with all of your decisions! I’m sure you’ll do what’s right for you. And soon enough this will all be in your rear view mirror.

    K Best of luck with all of your decisions! I’m sure you’ll do what’s right for you. And soon enough this will all be in your rear view mirror.

    Karen

  • lilych
    lilych Member Posts: 176

    Khannigansip9, wow, would the SEs from radiation be that strong?

    The BS used to remind us a few months ago that:"If we are planning NEO-ADJUVANT chemotherapy then we will want an axillary sono before hand". You mentioned SNB, would SONO be good enough as well?

  • WC3
    WC3 Member Posts: 658

    Khanniganslp9:

    I was just talking to a family member the other day about not knowing whether or not it was in the lymph nodes due to neoadjuvant chemotherapy. One ultrasound saw a suspicious lymph node, another didn't and it was not biopsied, but I had pain in exactly two places after my first and second infusions, and that was in the tumor and that lymph node.


  • lilych
    lilych Member Posts: 176

    WC3, having pain in node or in tumor means it is suspicious? The MO could not feel anything during the checkups after the 3rd NAC infusion, but my wife still felt pain in the tumor area right after the last one, what does it mean? only the surgery can confirm?

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    The whole lymph node thing is a quandary, especially with HER2+ and requiring chemo.

    My initial testing was diagnostic mammo followed by US and included the axillary nodes. Two were suspicious. One of those was biopsied at the same time as the breast. The result was negative - benign lymph tissue. And the radiologist that did the biopsy called that "discordant" in his note. The subsequent MRI showed a hole right through the node so it's not like he missed it or something.

    My second opinion BS was through a university setting. She said it's probably 50/50 nationwide about whether or not they do the SNB before NAC. On the one hand - more info for staging. On the other - chemo regardless. If I had gone through JHU for oncology, they probably would have done the SNB first. But I didn't.

    It weighs on me sometimes - the not really knowing. At the time, I was so worried about so many things and figured it wasn't worth seeing yet another person (MO) about. I was lucky to have a truly great result. I just remind myself that it's probably not likely that any single cells that might have been elsewhere in my body were able to survive chemo if the 2.8 cm tumor of them was all gone at surgery.

    I was able to avoid radiation because no cancer cells were found. If they had been in the lymph nodes before NAC then chemo would have been recommended, most likely. I really didn't want radiation - was fearful of left sided collateral damage.

    We all have to try to make the best choices that we can with the info that we have at the time. That's all we can do. And try not to look back with regret.

  • WC3
    WC3 Member Posts: 658

    LilyCh:

    I figured the pain in the tumor was a result of it responding to the chemotherapy so I imagined there was something in the lymph node that was also responding.

    My tumor became significantly less palpable after the 3rd infusion but my BS said they tend to "dissolve" rather than shrink so the pre chemo region may still be cancerous, only not as dense.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    Pain at the tumor site is another difficult question. I initially found the lump because something kind of hurt in my breast and I was feeling around to see if there was anything there! I don't recall any change in sensation during chemo, but I could definitely tell that it was pretty much gone by the second round. I never had any feeling of discomfort in my underarm.

  • Khanniganslp9
    Khanniganslp9 Member Posts: 20

    good question for the oncologist. If sonogram /Ultrasound is as good as Ana crisp biopsy of the SN. My guess would be you still need an actual node not just imaging.

  • WC3
    WC3 Member Posts: 658

    NotVeryBrave:

    I didn't have any pain at the tumor site before the chemotherapy, but thinking back, in that breast I would very occasionally get a sharp pain on the surface of my areola like an invisible bug bit me, but I didn't think much of it and have no idea if it had anything to do with the tumor, which isn't near it.

    A few nights ago though, I fell asleep on my left side, which is the side the cancer is on....I typically sleep on my right side but will sometimes turn on to my left side for a short period of time, but had not been able to since I got the port because when I am on my left side I usually feel discomfort in my neck from the port catheter. But a few nights ago I managed to lay on that side without discomfort and I feel asleep for a few hours. I was not on my breast, just my arm, but when I woke up and moved to turn to my right side I felt a shooting pain in my left breast. I have no idea what that was about.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169
    WC3 - Hard to say. Once cancer enters the picture, it seems like everything is cancer. It's likely that if you had this kind of sensation in the past then it would have been written off as just something that happened from laying on your side for a while when you usually don't do that.
  • Giveityourall
    Giveityourall Member Posts: 62

    Notverybrave,

    I am not a doctor.....but I was hypothetically thinking about your comments. Let's say there is a patient named Anna. Let's pretend Anna has a 2.8 cm tumor in her right breast that is HER2 positive. Her MRI and ultrasound show no signs of cancer in her right axillary (armpit area) lymph nodes. Unbeknownst to Anna, five cancer cells have arrived in her sentinel lymph node. However, they are pushed along through her sentinel lymph node and three of the five cancer cells land in Anna's fifth axillary lymph node. These three cancer cells have found a new home. They begin to multiply. The two other cancer cells continue to travel through the lymph system and settle in a lymph node found in Anna's neck. These two cancer cells begin to divide and multiply.

    My point is there a distinct possibility that a cancer cell can travel through the closest lymph node, meaning the sentinel, and settle some place else, such as a lymph node in the neck? I would think that could happen.

    Also, if your tumor has a blood supply, then why couldn't a cancer cell travel through a blood vessel? Do you think cancer cells could enter the circulation system? I would think that would be possible as well.

    Just wondering and trying to think things through.

    Giveityourall

  • hapa
    hapa Member Posts: 613

    LilyCh - I believe MD Anderson has a study for Her+ and TN patients who are 'exceptional responders' to chemo and get a PCR. They do a biopsy on the tumor site instead of a lumpectomy and if its clean they skip surgery and just do rads.

    Found it: https://clinicaltrials.gov/ct2/show/NCT02945579

    Its only enrolling 50 patients and I imagine it filled up quickly. I would have been all over that if it were an option.

    Just FYI, I believe similar studies have been done before without the biopsies (based on imaging results only) and those women had something like a 30% rate of local recurrence.

  • WC3
    WC3 Member Posts: 658

    If they would have done a few more chemotherapy infusions on me maybe I would have had a complete response. I think they used to do 4 standard for TCHP and now it's 6 though I have heard of one person getting 8.

  • spiritus
    spiritus Member Posts: 1

    In the Netherlands 9 rounds are basic for this cancer type. (From april until oktober) .My wife had 9 rounds ! She had NED before operation! She now waits for the biopsy results.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    GiveItYourAll - I'm not sure which of my comments you were referring to so I'm a bit perplexed by your post.

    Yes, I absolutely believe that cancer cells can pass through the sentinel nodes and end up in other lymph nodes. I also know that cancer cells can travel through the blood stream to pretty much anywhere. And there is no way of finding individual cells spread far and wide.

    However - I find it somewhat unlikely (not impossible) that, if chemo completely destroyed all of the cancer at the tumor site, that individual cells would have survived and gone on to flourish. Of course, that's possible. If it wasn't a possibility then I'd probably sleep better at night.

  • Giveityourall
    Giveityourall Member Posts: 62

    Khanniganslp9,

    I am so sorry to read about your struggles. When I started neoadjuvant therapy, I was told that the new medicines (Herceptin and Perjeta) would destroy the tumor. I assume you had the same expectation. Therefore, your result must have been very stressful.

    I thank you for having the strength to share your story.

    Giveityourall

  • Khanniganslp9
    Khanniganslp9 Member Posts: 20

    hi Giveityourall, I’m so happy you are through the bulk of your treatment. It looks like you were able to avoid radiaton. Yay! Are you recovering from the chemo? For me it all got better and better, even the neuropathy went away. I’m happy for you that you are getting close to being done. Big hugs.


  • Khanniganslp9
    Khanniganslp9 Member Posts: 20

    WC3,

    I don’t know about the pain and what it means. But once you start the chemo you are on the best past to eliminating the csncer, and hopefully the pain in those two area. Don worry about it now that you have started. Chemo is a killer -of bad cells- so just keep positive and finish the treatment. This will soon be behind you and you will be stronger I’m so many ways. We are truely WARRIORS! With love, karen

  • Khanniganslp9
    Khanniganslp9 Member Posts: 20

    lilych,

    If you still haven’t started chemo you can demand a SLN biopsy. Which I would definitely do.

    If you have already started it, just know that you are now doing all you can, and don’t worry about it anymore. Yes you will never know if there HAD been cancerous cells in the node that were subsequently hopefully killed off by the chemo, but no use worrying after the fact.

    Big hugs sweet strong warrior!

  • moderators
    moderators Posts: 8,743

    spiritus, we welcome you to our community, and thank you for also sharing. Always very interesting to hear about how different countries manage their diagnostic and treatment procedures/protocols differently.

    Big hugs to all you strong, sweet warriors!!!

  • Giveityourall
    Giveityourall Member Posts: 62

    Notverybrave,

    I apologize for not properly correlating my comments to your post.

    My comments were related to your radiologist's “discordant". I was wondering why he/she used this term. If my interpretation is right, then the radiologist was expecting a malignant lymph node. Your initial biopsy resulted in a shiny and clean lymph node..... and he/she, based on radiologist's guidelines, declared your lymph node result was an anomaly. In other words, the guidelines must state if this and this exist (like a Stage Ii tumor), then there should be lymph node involvement.

    As I was pondering “discordant".... I started to think about cancer cells' ability to travel throughout the human body. Since we know cancer cells don't necessarily settle and grow in the first available node, why does the medical world choose to biopsy that sentinel lymph node (SLN)? Obviously, evidence based research proves SLN's typical involvement, but you and I and many others prove that “ain't" always the case. Therefore, why are we not given the choice to have our lymph nodes removed or dissected? I guess we have the choice, but I was never officially told that the choice was mine. Looking back, I guess it is supposed to be understood .....or perhaps it sits in the fine print of those 10 pages that you are given two minutes to read and sign.

    Like u said, this whole lymph node stuff is a quandary. Plus, we are used to having answers. We are an advanced civilization. We can travel through space and do amazing things on our smart phones, but we can't figure out cancer. That situation inherently causes anxiety and I have to learn how to manage it.

    I am thankful that you achieved “pCR" - pathological complete response because that means science is marching in the right direction.

    My best and I wish you happy, healthy tomorrows.

    I apologize for my “discordant" response. Lol. Hope this explains my thinking process.

    Giveityourall

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    GiveItYourAll - No worries. I was just a bit confused. I think we're basically on the same page with our understanding - or lack there of!

    My understanding is that the whole lymph node thing is really just about staging. Yes - it's more likely that cancer cells would show up in the first group of lymph nodes if the cancer has left the breast. And yet it's also possible to find none in those lymph nodes and wind up with metastasis.

    So in terms of staging - while positive nodes would have made me a Stage IIB instead of a Stage IIA - they would not have changed my plan of care. They probably would have bought me radiation - which I didn't want. Especially if no cancer was there after chemo.

    My BS had said ahead of time that if one or two lymph nodes were positive then they would just do radiation to the area. If more were positive then they'd do an ALND. Meanwhile, I'm trying to keep my body in more or less one piece. It seems like every surgery, every drug, every "treatment" just leads to more problems and more surgeries, drugs, or treatments!

    So yeah - I really didn't like the "discordant" label at all. The lymph node looked suspicious. Actually, two of them did. So it's possible that it was positive and the biopsy cores just didn't get that part. Or it's possible that it looked funny for some other reason - infection, inflammation, maybe my body trying to fight the cancer? It bothers me, but what else is new in this crazy BC world

  • Jedrik
    Jedrik Member Posts: 12

    I had a suspicious lymph node. At fist they did a biopsy and the results came back negative, no cancer. Since this was discordant with the appearance, a SLND was done: Three lymph nodes removed, none of the three showed any sign of cancer.

    That's that. No further discussion, explanation, anything.


    Personally I think this lymph node was enlarged because it had been working overtime for quite a while. I think, this is somehow relevant, but nobody else ever cared.

  • lilych
    lilych Member Posts: 176

    hapa, thanks so much for your information about the trial for "Exceptional Responders". I actually contacted them yesterday and to my huge surprise, they replied with 2 hours and said my wife "would be a perfect candidate for the trial" and wanted us to process the enrollment very soon. However, I talked to my wife's MO afterward and she was not very comfortable about the trial and preferred us to stick to the current treatment with surgery and radiations followed up. I guess we give it up.

    Thanks very much again.

  • lilych
    lilych Member Posts: 176

    Khannihanslp9,

    My wife actually finished the neo-adjuvant chemo three weeks ago. Per the MRI post chemo, she had very good response, that was why I was wondering about the up-coming treatment plan. Although the doctor from MD Anderson thought my wife is a "perfect candidate" to join the trial and not have the surgery but do biopsies and radiations instead, we may still choose the "standard" treatment with surgery (like my wife's MO suggested).

    Thanks a lot.


  • Primo
    Primo Member Posts: 1

    Her 2 positive Breast cancer Stage 4, was found in hip bone per PET Scan at time of Invasive Ductal Carcinoma diagnosis.

    Rochester Mn Oncologist recommenced TCHP forslight chance of cure, or at least longer remission. Minneapolis oncologist refuses to order the Carbopletin part, says it’s not used for Stage 4