treatment after mastectomy: diagnosis jumped from stage 0 to II

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cl00
cl00 Member Posts: 39
edited June 2014 in Stage I Breast Cancer
Hi,

I have a question regarding the post mastectomy treatment and wonder whether I should get chemo. Would really appreciate it if you could give some suggestions or doctors' name.

I was diagnosed with DCIS on left breast last November and had the mastectomy on Jan 7th. However, the sentinel lymphnode biopsy turned out to be positive during surgery and uckily only 1 out of 16 lymphnodes were positive. However, this puts me into stage 2 from original stage 0.

The oncologists had two discussions about my case since it's atypical for DCIS patients have positive lymphnode(s). They initially suggested just Tamoxifen, but my doctor just called me today and mentioned now more people are leaning towards Chemo with Tamoxifen (plus Herceptin now pathology shows mine is HER2 positive in addition).

Their rationale: 1. my lump was palpable and big (5cm x 5cm)

2. Technically mine is stage 2 ecause of the size and has become invasive

3. My age: 35.

I'm waiting to see a different oncologist here in LA in two weeks, but would love to hear some suggestions. Thanks a lot!

Comments

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited February 2010

    Sorry about the dirty node :(  Do your doctor tell you how much was invasive or if there was any invasive component ??

  • BooBee
    BooBee Member Posts: 860
    edited February 2010

    I was also a II with one node positive.  My feeling is, if it's traveled to the lymphatic system ist's become mobile.  Cancer can travel through the blood stream as well.  HER2 is a more aggressive form of cancer than mine was.  I wouldn't hesitate to do chemo if I were you.  Ask yourself how you would feel if your cancer came back two years from now?  Would you feel regret?  Will you have the added daily stress of worrying about metastasis?

    This is a personal decision and your onco should be able to show you stats to help you make your decision.  You can also check out one of the treatment calculators too.  There is a section that allows you to change your treatment.

    http://www.lifemath.net/cancer/

    Best wishes.

  • sunnyhou
    sunnyhou Member Posts: 169
    edited February 2010

    Hi there..

    I love this group.. but I also want to recommend another website.. it is for women under 40 with BC.  You might post over there too to get some help and ideas

    it is

    www.youngsurvival.org

  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    It's my understanding that Herceptin -- which is a MUST for Her2 positive -- is more effective when given in concert with a standard round of chemo.  I am HER2 positive and had AC x 4 Dose Dense followed by Taxol x 4 Dose Dense (with Herceptin every three weeks starting on day of first Taxol).  I have read that TCH (which is the same as what I had but minus the Adriamiacin, which by the way is the drug that most causes hair loss) has also been a very effective combo.  IMHO what you should be looking at is whether to do ACTH or TCH.  Ask your Oncologist and certainly get more than one opinion if it helps.  I agree with Boobee -- Her2 is an aggressive cancer and you must be aggressive in treating it.  It sounds like your DX is similar to mine (though my tumor was smaller -- but that is irrelevant): DCIS which has become invasive, 1 node and HER2 = chemo and Herceptin for best prognosis.

    For what it's worth, my initial diagnosis also was DCIS -- they did not discover that it was invasive until they opened me up.  And the HER2 diagnosis, as well, came at that time.  So I too went from a Stage 0 to a Stage II... at the time I felt tricked.  In retrospect, it was just the best they could tell as they went along.  I am grateful to have gone through chemo (even though I lost my hair, which is now growing back) because I feel that chemo, along with the Herceptin I am now getting, has given me the best chance to survive BC.

    Lilah

  • cl00
    cl00 Member Posts: 39
    edited February 2010

    Thanks for the info. I'm petty torned on this .

    Jamieh, My report just said it's invasive and I don't know about the size of invasive part.

    Lilah, quick question:do you know much difference between ACTH and TCH in terms of  side effects and effectiveness? How did your doctor pick yours? So you only did 4 cycles?

     Thanks!

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited February 2010

    Mine was the same - DCIS diagnostic at biopsy, changed to DCIS, LCIS, ILC &+ SNB positive  after MX. Treatment TC x 4 rounds + more lymph node removal afterwards and then we'll see.

    Ask your BS or oncologist for your pathology report. The have to give you a copy.

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited February 2010

    Hi:

    I was first thought to be Stage 1 and then when it was all over with Stage  II.  Have you had Oncotype DX testing?  That was the deciding factor for Chemo with me.

  • cl00
    cl00 Member Posts: 39
    edited February 2010

    Thanks for the suggestion on oncotype. I'll ask my oncologist but not sure whether I'm eligible. When I checked online, it says it's for ones that have negative nodes. I was pretty surprised.

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited February 2010

    I would see why there is not a report on how much is invasive.  ((Bighugs))  I am sorry that you had that one node....  If you are HER2 positive there are a couple of treatments TCH, AC+TH, and TH that are used.  I had TCH because I was only offered that which in hind site I would not have wanted the AC because of the possible heart damage.  I may have done the taxol and herceptin but it's all hindsite now :).  I think your oncologist should give you all of your pathology report and his treatment recommendation. 

    BTW, some onc. will only do the oncotype if you are not HER2 positive so that maybe out.  I have heard that if you are her2+ that at that point the oncologist is going to recommend chemo....sorry....

    I hope you get a plan in place soon.  Waiting IMO is the worst part.

  • NancyGA
    NancyGA Member Posts: 4
    edited February 2010

    My situation is like yours, except the SN was negative during surgery and then turned out to be positive, leading me a second surgery for another 18 lymph nodes (which all turned out to be negative, thank god).

    I've seen 3 different oncologists and they all have told me the same - to do the chemo, essentially because of my age (I'm 28). I'm still oncologist-shopping but they've told me what I think is true - that even if other treatments like tamoxifen and herceptin (though not for me - I'm HER-) may be way, way more effective on my cancer than chemo, they would not recommend that I take the risk. I'm starting to accept that. I don't want to skip any treatment now that might reduce my risk of recurrence down the road, even if I think it's overkill. I think the mind game is the worst part right now, and I certainly don't want my my future burdened by a "should've". 

    Still, if oncotype comes back low, it will be much harder decision.

    Good luck! 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2010

    Hi, I'm sorry you're dealing with all of this.  I was reading what you said about your diagnosis and I was thinking that maybe you are stage 3?  You have a 5cm mass that has involvement in one of your lymphnodes.  Here at bc.org you can look it up under the stages section

    http://www.breastcancer.org/symptoms/diagnosis/staging.jsp  It's very helpful and easy to read.  I hope you get some answers.  Just remember we are here for you.

  • kimt
    kimt Member Posts: 40
    edited February 2010

    You only count the invasive part of the cancer in determining the staging, not the DCIS, though.

  • cl00
    cl00 Member Posts: 39
    edited February 2010

    Nancy GA, did your doctor recommend what type of chemo for you?

    Thanks Jamieh, I'll start to look into different types of chemo. I don't think they categorize my cancer as invasive. I asked a friend of mine who's an oncologist for lung cancer, it seems they still count it as DCIS. I'm seeing a different doctor next week and will ask her more about the final pathology report.

  • prayrv
    prayrv Member Posts: 941
    edited February 2010

    c100,

    It would appear to me (as I was also DCIS mx only to find out I had invasive after the surgery but no lymph node involvement) that although you have DCIS, there is/was an invasive portion to your tumor.  They may not have been able to find it in the pathology.  Pure DCIS will not leave the ductwork of your breast.  It is the invasive portion that has left the ductwork and went to your lymph node.  Please read the posts from Beesie as she is the expert on DCIS.  I'm sure you will find wonderful information there.  Remember that it was posted on the DCIS forum and that some may not pertain to your situation any longer since you are now considered stage II.

    http://community.breastcancer.org/forum/68/topic/727963?page=3#idx_85

    Hugs,

    T.

  • cl00
    cl00 Member Posts: 39
    edited February 2010

    The problem in my case is that they couldn't find any invasive cancer in the breast, only DCIS was found, and one positive lymphnode. Therefore there's no size for invasive portion in the breast. I can't use oncotype or Mammaprint since i don't have invasive cancer. I went to city of hope and they had two disucssions. At first before FISH result came out with HER2 positive, they suggested against chemo. Now they are still not sure but leaning towards chemo. They kept on emphasize it's unique situation and no data/guideline for it. :(

  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    c100 -- I don't know the difference in terms of side effects except for one thing: adriamiacin has a risk of heart damage and the other chemos do not; so it's possible that THAT is the chief difference in terms of SEs (or potential SEs) or the main reason why there is a choice of ACTH and TCH.  I also know that TCH is a newer protocol and that ACTH is the standard (for the last 10 years anyway).  I was not given a choice (though I did not ask for one either).  My doctor said ACTH and described the SEs and the percentages (post chemo and surgery, etc) re: recurrence and I said: OK.  I do feel I've done everything now (still getting the Herceptin til next fall) and that is a good feeling.  I also had my MX after chemo (2 lumpectomies before it) and there was no cancer found in the final pathology of the tissue (which also was a relief).

    Your situtation DOES sound different than mine (because no IDC)... so you might very well be a candidate for TCH (and skip the risk of heart problems that Adriamiacin adds).  Herceptin also presents a risk (very low) of heart problems but the risk from Adriamiacin is apparently worse.  (The risk is a risk, in both cases, of developing congestive heart failure).

    Also to clarify: I did AC x 4 followed by Taxol x 4 -- so 8 cycles in all.  Herceptin, which I get every three weeks, was also started when I started Taxol (I think they delay the start of Herceptin with ACTH to the day you start Taxol because of the heart issues, by the way, so if you do TCH it's possible you start all together -- but I don't know that for certain, just guessing).  What do your doctors recommend?  I realize your case is unique... but they must have a recommendation. 

    Lilah

  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    PS - my understanding re: Oncotype testing is that it is for women who are ER and or PR positive and early stage... because with that type of cancer the treatment CAN be more effective if just given in pill form (Tamoxofin, for ex).  I was negative on both (positive for HER2) so did not need the Oncotype test (which is done to determine whether a patient will benefit from chemo or not; i.e., whether the risks from the treament are not worth the benefits...)  If you are HER2 positive you don't need to be Oncotyped because you need chemo in some form (at least that is the standard of care); I have heard of some women JUST receiving Herceptin but I don't know how successful that treatment is vs. Herceptin PLUS some traditional chemotherapy,

    Lilah

  • spacebmt
    spacebmt Member Posts: 15
    edited March 2010

    My mother had Wide local excision with right mastectomy Infiltrating duct carcinoma NOS(
    Grade II BRS Modified) measuring 1.4X1.3X1 cm wit tumor metastasis to one of
    seven axillaries lymph node with tumor size 1.4 cm size,Nipple areola, Deep margin , Free of tumor. Six cycles of chemo and tamoxifen taking. No radiation taken before or after surgery.

    Due to the suspicion of malignancy, she was planned for wide local
    excision followed by frozen section. Wide local excision and frozen was done
    and was reported as infiltrating ductal carcinoma and posterior margin was
    involved. So modified radical mastectomy was done.

    After completing the last follow up with doctor two weeks later she started
    having cough with scanty expectation breathlessness and left sided chest
    pain it last for another two weeks. She went to a doctor and he did some
    clinical testing like CT scan and chest examination and confirmed the
    metastasis spread to lung and small lesion in the liver. Lung almost right
    full and left 3 forth was affected. She went her regular doctor oncologist
    and they did some pulmonary medical support for 10 days during their
    investigation later she was given Inj.Docetoxel one dos. Later discharged
    from the hospital and after within ten days she passed away.

    The surgery done two and half years back.last one year she used to have tamoxifen.

    please advise is this treatement  was ok for her. what could be the reason  that she could not prolong her life.After the metastasis to lung and liver she had 15 days left to treat.The oncologist were not sure how much area was invoolved in the lung cancer cells because they were suspecting the TB, and confirmed the spread bur said can start treatment only after TB test.

    Was this treatement given in the begining for  Ductal carcinoma is currect. Any mistake done during the follow up. During folllow up no chest extra and CT done in last one and half year . But altra and mammo done.

    Please advice yours opinion.

  • NancyGA
    NancyGA Member Posts: 4
    edited March 2010

    Hey C100-

    Sorry for not responding earlier - docs all the time! Everyone has recommended chemo. And, btw, it took them 3 weeks to find my tumor and they told me they might have never found it, but that they were going to recommend chemo anyway. And they did. At first it was AC/T x8 or FEC x6. Now with my heart issue they are saying TC x6 or x4, depending on how the heart surgery goes. 2 oncs said oncotype would not be useful since I have the node positive. A third said I would need chemo anyway but has now sent for oncotype testing because of the heart issue.

     I have mentally resigned myself to chemo and am even kinda looking forward to it. I know that's insane, but I am ready to treat this sh* and treat it til it's dead and then to move on with my life. I went to the Young Women w/ BC conference this weekend and was excited to see so many young women who have done it and are past it. I'm ready to be with them. 

    Shop around with your oncs. You'll know what to do. 

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