the neoadjuvant staging dilemma

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new_direction
new_direction Member Posts: 449
the neoadjuvant staging dilemma
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  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    My tumor was 3,5 cm to begin with measured with image diagnostics. The needle biopsy from lymphnodes was negative but still I underwent sentinel node biopsy before neoadjuvant chemo to make sure. 2 nodes were taken out and there were cancer cells in both of them. They didn't measure size or number of cancerous cells. So don't know if it was micromets or what. Just know the lymphnodes weren't pathologically enlarged.

    I just saw the article "Breast Cancer Cells in Sentinel Lymph Node Don’t Affect Survival". I have just had mastectomy and lymph node removal. I still need to get the answer from the path report. If there are cancer in any lymphnodes  it's not so hard to go along with radiation. I just think this new finding makes it hard to carry on - taking whatever treatment is offered if it turns out there is no metastases in the lymphnodes. Again, making that hard decision would have been easier if I had known how "large" the 2 metastases were.

    Has anyone been in the same situation. Did you go through radiation? what were your thoughts, pros and cons.

  • Momine
    Momine Member Posts: 7,859
    edited January 2013

    What does your onc think? When will you get the final path report from the surgery?

  • NancyD
    NancyD Member Posts: 3,562
    edited January 2013

    I opted to hit it with everything in the arsenal. I had a BMX (right-prophylactic) after four rounds of neo-adjuvant chemo, and then an additional two rounds of chemo before radiation. Still found some cancer in the removed lymph nodes, although size was not mentioned on the path report. But there was some extracapsular extension (node had burst open with cancer). My feeling on that is that the fine needle biopsy that was performed on an enlarged node before chemo might have compromised the node sheath and led to this. The nodes were left in place during chemo and not removed for several months after the biopsy.

    Radiation was quite easy. The only inconvenience was that it was everyday (except for weekends, holidays, and a day when the machine was being serviced) for six weeks. I chose a treatment center near my office so I could make my appointments for lunch time or end-of-the-day.

    There's no pain during the initial treatments, but there can be some reddening and burning of the skin towards the end. Not everyone experiences this, though, and for me it was not any worse than a sunburn.  All radiation centers will have some kind of ointment they will reccommend for you to use. I found that I blistered anyway, even though I faithfully used their suggested cream. The section here on radiation treatment will name many other products that can be substituted.

    Every precaution is taken to assure minimal collateral damage to other organs. Today's radiation machines are very accurate, and the technicians use calibrations that are checked and rechecked. That said, there are some areas that might need radiation that are close to or behind a healthy organ. Lungs and heart sometimes are in the way. The RO will let you know if there is a situation like that, and I suppose you would have the right to opt out of treatment. But I would definitely speak with an RO first to find out just what your situation is.

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    next week. I think my onc think I should carry on with the treatment program no matter what.

    wow just read about the study with zometa added to neoadjuvant chemo. About half of all participating patients (stage II and III) had cancer cells in bone marrow before treatment! I'm really surprised... Zometa seemed to reduce the positive bone marrow biopsies but not significantly... I wonder if the immune system takes care of so many micromets to the bones all the time - surely not half of us gets bone mets at some point or what?!

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    Thanks for your response Nancy. It doesn't sound so bad when you describe it. I have just come to a point where I both want to feel like I do everything I can but also take as much care of my body as possible.
    It will be easier with the pathology results I think. But nice to have done some thinking beforehand. So thanks for your input.

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    Hi again new direction.. They tested one node before chemo for me, came back positive, and as you know I am not yet done with chemo either.. Theycmade it seem like it was microscoppic involvement as Well, and bothing was even remotely enlarged. My thoughts are will I ever know how many we're postive and if positive after chemo, should I get radiation with mastectomy.... I plan to do it if there is still lymph node involvement.. I am going to have lumpectomy first, get path report and then depending on what they find.. on mastectomy with immediate recon or waiting in order for radiation to lymph node area.. I guess it all depends on path report.. But I am hoping that chemo will downstage everything...tumor is shrinking so iits hopefully killing what's happening on nodes as well.

  • Pure
    Pure Member Posts: 1,796
    edited January 2013

    They thought my toumour was 2 cm going into surgery...During the sentinal node they did 2 nodes-one had cancer and one had a LITTLE bit of cancer... That changed after surgery...The tumour was really 4cm and it half of my nodes that they took out.... So they skipped over the sentinal nodes.

    I had zometa with chemo..With every 3rd taxol I had zometa as well. Now I get zometa every 6 months. Can I see the study you read on zometa? I would be intereste in seeing that.

    Thank you!

  • Pure
    Pure Member Posts: 1,796
    edited January 2013

    FYI: I don't think chemo downstages things..Some of us that do tx first just don't really no our stage..... But you only get down staged if they made an error... Your stage is based on your stats prior to any tx...

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    Pure - the article about zometa along with chemo is here: http://www.breastcancer.org/research-news/20100401b?utm_source=Personalization&utm_medium=accounts&utm_campaign=142 - did you also have radiation?

    Shari - sounds like you have a good plan. I understand why you want to go for lumpectomy at first. In my situation I didn't feel like I had that choice because I both had a larger tumor and there was a larger surrounding area which contained microcalcifications, meaning there were in situ or invasive cancer cells there too.

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    Well if the chemo shrinks tumor and kills cancer in the nodes..it may not change the initial or original stage at diagnosis but i would assume it does change things.. But they do chemo before surgery at times to shrink tumor and this it is making some impact on the cancer.. At least that was impression I took from someone Who had it, had cancer in nodes and after chemo had none.. They told her she went from prob 3a to stage 1. In theory she still goes by stage 3.

    I guess I would assume chemo is supposed to help and hit those rogue cells and some in nodes.. But I don't know

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    Yeh it took some stress away from not knowing if I was going into mastectomy needing radiation or not.. Part of me feels that I should have the radiation anyway bc node was positive but the way bs surgeon puts it, if there is nothing in the nodes after chemo then radiation would just be overkill( after axillary node dissection and mastectomy) so I guess I understand where she is coming from too.

    New direction.. How r u feeling

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    Exactly shari! My feeling as well; "overkill". But it seems that the standard treatment suggestion I get is radiation no matter what!

    Im very tired. It feels like the body is really struggling to revitalize after all the things it has been through. I try to rest as much as I need. Part of me is also very relieved to have finished chemo. I need to appreciate it more. The only good thing about it was that it helped. Im also a bit anxious about the future. I cant see myself return to how things were. But WHAT then?
    what about you? how are things?

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    I guess u have to see what path report says since that will determine radiation. Why would they radiate if there is nothing there after chemo.. I don't think my tumor was that much smaller than yours so so it's funny to see that ur treatment plan involves the radiation after mastectomy since its not overly large but then again i dont really know anything haja.

    i am very much In treatment still...so I really wake up thinking about cancer ad going to sleep thinking about it.. I will b glad to be done with chemo and then surgery.. I am told it does get easier, I just waitig until when..

    I too have made lifestyle changes since diagnosis, for the better except they limit my exercise to pure walking when before this I had really gotten into a good regimen and had to leave it in the dust for a bit.. Nt that I enjoyed the exercise but especially now I would feel better doing more.

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    walking is a great exercise in my opinion. It doesn't tax so much on your joints etc. Am I understanding you correctly - you didn't enjoy exercising?
    I know for me I need to 1. make sure my body heals well and uses its energy on that 2. start slow, building muscle tissue 3. just DO THE EXERCISE for some time thereafter. I was almost addicted to exercising earlier in my life. That state can be reached again.

    I have been looking at articles etc. It's recommended to have radiation after mastectomy if you have either positive lymphnodes or a large tumor. However IF lymphnodes only contain micrometastases it is not recommended. I must assume that the pathologist "know" this since my answer on the sentinel node was "positive nodes" - will have to ask next time. It has been proven effective both in regard to local recurrence and survival. I have not been able to find any studies which investigated this in case of a complete pathological response. But the recommendation goes for this group as well...
    Actually site of recurrence is most likely in the breast area, rarely in the lymphnode area (if lymph node removal has been carried out). Only if less than 10 nodes have been removed or there is extensive tumor involvement an individual decision must be made if radiation of the lymphnode area should be involved.... ...so maybe my concern has been for no reason. I was mostly worried about radiation because of possible involvement of armpit - and therefore extra lymphedema risk.

    Conclusion: will still have to wait for the path report to know for sure what will happen but I don't dare to say no to radiation...

    For others who are interested in this particular dilemma I also found a similar thread on the boards:
    http://community.breastcancer.org/forum/72/topic/788032 

    (shari: There is a risk of postponing radiation the more extensive the surgery. So this also speaks for your plan. I was also told studies have shown women seem to be more happy with their reconstruction when not carried out right away. Not what made me choose the way I did but makes some sense).

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    New direction.. You wrote:

    (shari: There is a risk of postponing radiation the more extensive the surgery. So this also speaks for your plan. I was also told studies have shown women seem to be more happy with their reconstruction when not carried out right away. Not what made me choose the way I did but makes some sense).

    I am not sure what u mean.... If I postpone radiation then does that mean my surgery will be more extensive... Or if my surgery is more extensive, then I should wait longer for my radiation... To heal and such.. Sorry for the confusion.. Do u know if there r still postive nodes after chemo.. Should one definitely get rads, or is it only recommended for a certain amount?

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    Spoke to doc again today... If I do need rads, it would be after lumpectomy before mastectomy... That would prob ease the wait for rads besides normal 4week healing time after lumpectomy...because surgery so much less extensive... Maybe that clears up thing too on extensive Rupert issue.

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    I meant, the more extensive the surgery (for example mastectomy+recon vs lumpectomy) the higher risk of complications such as infection, healing issues which could end up causing delay of radiation (=risk of worsening of prognosis).
    From what I've come up with it seems it speaks in favor for radiation no matter the path report if there are any positive lymph nodes (if larger than 2 mm) before chemo... The recurrence rate and survival is significantly improved...

    I was a little confused about your surgery. You want mastectomy in any case right? what is the reason you choose lumpectomy as the first step?

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    Well we don't know size or amount of positive nodes but if after chemo and no positive nodes then why radiation ? That's why we want lumpectomy first ... To determine if there r still positive nodes since that would delay the reconstruction I want after mastectomy...if I need rads they wouldn't do immediate diep flap reconstruction...

    So should I now get rads regardless since I had positive nodes on the first place ..so confused

  • NancyD
    NancyD Member Posts: 3,562
    edited January 2013

    One thing I should add is that they were concerned about the nodes that could not be removed surgically (supraclavical)...what might they have lurking there that wouldn't show up in the PET/CT? Since the chemo still left some active cells in the removed nodes, the radiation was focused on the nodes that were left behind in the center of my chest and the axillary area that likely held more than the ten nodes that were removed. I had begged my BS to removed as few nodes as possible since I was worried about developing lymphadema.

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited January 2013

    I had radiation after my mastectomy and chemo as I had four positive nodes at surgery (which was before chemo).  I had three fields of radiation and these fields did NOT include the axillary area.  I was told they normally do not radiate this area due the the increased risk of lymphedema (I believe they meant lymphedema after lymph node removal and mastectomy-so this could have been just my particular case).  I guess they assumed the chemo would have taken care of any stray cells in this area. I never really thought too much about this area not being radiated. I was told that if I had more than 3 nodes at surgery, I would also need radiation with the mastectomy. Good luck to you! 

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    Nancy was your cancer located in the right breast? The lymphnodes around sternum is left out if on the left side as far as I know.

    Shari yes it's confusing and I don't want to influence your decision. Sounds like you need to discuss it with your onc. The articles I've found point in the direction one needs rads no matter what (if you start out with positive nodes).

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    "Radiation in the Setting of Marked Cytoreduction: Do We Radiate a Cleared Nodal Basin or Breast?"
    http://www.asco.org/ASCOv2/Home/Education%20%26%20Training/Educational%20Book/PDF%20Files/2011/zds00111000022.PDF

    Still don't know if I'm stage II og III and will perhaps never know? Have I misunderstood something?

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    I read article new direction.. Thanks will discuss with doctors but I guess we still have to see what happens after chemo and after surgery to make any further decisions.. Thanks a ton.. Article was very insightful. Haha still not sure where that leaves me though.

  • wildrumara
    wildrumara Member Posts: 450
    edited January 2013

    Here is my story......I am going to give you the condensed version.  Neoadjuvant chemotherapy, for multi-focal (2) tumors, with no evidence clinically of positive nodes via ultrasound, MRI, PET scan.  No nodes were palpably enlarged or tender on examination either. My response to chemotherapy was mediocre.......I think I started with tumors that were 2 cm  (shrunk down to 1.2)  and the other was 0.5 cm, shrunk down to 0.3.    I was told by my surgeon and my oncologist that ER/PR+, grade 2, tumors don't respond as well to chemotherapy as say someone with a triple negative diagnosis, or grade 3.  It is a known fact that ER/PR+ women will get the most bang for their buck with antihormonals. 

    Unfortunately, I ended up having two positive sentinel nodes.  One just passed into the threshhold of metastatic disease at 0.2 cm and the other focus was 0.25 cm.  Therefore, my surgeon decided to do an ALND.  Mostly because I had neoadjuvant chemotherapy before surgery and still had positive nodes. 

    I had two consultations with rad oncs ---One at the institution where I was treated, and the other at the medical center across town.  The RO at my institution said that the risks outweigh the benefit for me.  The two nodes were the only negative prognostic indicator that I had.  I had clean margins, a decent response to chemotherapy, small tumors, and no LVI.   I am pretty certain that if my tumors were larger or the lymph nodes had extracapsular extension, or if I had positive margins, he would have recommended radiation. 

    The RO at the other institution recommended radiation.  I spent a lot of sleepless nights trying to make a decision and in the end, I went with the recommendation of no radiation from the RO on my team.  He spent so much time with me explaining his reasoning and said that if I wanted radiation, he would radiate me, but didn't think it was necessary, especially considering I had an ALND.  

    I also had immediate reconstruction and I knew that radiation would complicate things. 

    Good luck with your decision.  Its tough.  Hang in there!

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    Wildurama,

    I know we have pm'ed before and I really appreciate ur input on the matter. I guess we will have to see what the path report is with surgery after chemo is done. I guess it is a gray area and I already have stress and anxiety over the what ifs. I will be having alnd as well with surgery and will see what the nodes say then .. Thanks again for ur story... Helps me feel better and a little more at ease

  • mary625
    mary625 Member Posts: 1,056
    edited January 2013

    New Direction--My cancer was on my left side. I had radiation. I never thought about it, but I think you're correct--I don't think there was a field for the intramammary nodes in the middle of the chest. I had four fields--underarm, superclavicular, chest wall and then protons (I think it was called) toward the center of my chest because the scar was extending a bit out of the chest/breast field. The proton type of radiation was very superficial, I was told, just to deal with the scar and the skin and not penetrate deeply.



    This scares me because I found buried in some scan report that I had an intermammary node "lighting up." I had a CT scan after treatment, and there was no node activity in any area. I am hoping either chemo or radiation took care of it.



    New Direction--I'd love any further info you have on left-sided radiation and what it covers. I guess the heart is the issue.

  • wildrumara
    wildrumara Member Posts: 450
    edited January 2013

    @Shari0707 - I'm sorry about that.  I didn't recall our private messages!  I pray you get some clarity soon.  I'm sure you will!

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    thanks for your story as well wildrumara.
    It confirms my initial findings on the subject and it seems you did the right thing. However then when I found the asco discussion article I got confused because it seems stage II have low risk of recurrence and they can skip radiation, stage III however can't. Not to celebrate in advance, I'm actually concerned I still have positive nodes, but if not my dilemma is I don't know what stage I was to begin with...

    Mary625. Don't you think it's standard to leave out the parasternal lymphnodes but if they know there might be disease in this area through either PET or CT they will include it as radiation target? In that case the risk of heart radiation does not outweigh the benefit...

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    New direction,.. Did they give u an initial clinical stage at diagnosis.. I know it's not as accurate as pathological stage but maybe it may help make a decision.. Unless u still have postive nodes, do the radiation! That's my theory.... They told me state 2 when I was diagnosed.. Based on size and positive node.. I will go wi that until I know otherwise.. Good luck and keep me posted..l

    Wildrumara... I hope for clarity too.. Will get it I suppose when I have surgery... March 1 chemo done and imaging done as well.. End of march lumpectomy and alnd... Then onto rads or mastectomy or both!

  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    Shari. I didn't get an initial stage. I don't understand how they can when they don't know how many lymphnodes are involved? My concern is that these studies point in the direction of doing radiation either way, however if starting out at stage II it might not be necessary. I'd love to turn down radiation if I had evidence of the safety of it, but I just don't feel good about assuming I'm stage II from image diagnostics alone.

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