i need some answers/info .... please

rosie06ct
rosie06ct Member Posts: 220

As you can see in my info that I was diagnosed stage 4 from the get go with bone mets,positive lymph nodes  one under arm the other under collar bone and my onc said pet scan  showed all the way up to my neck and other breast also.

Ok so i have been on Femara and zomets since middle of July,my tumor markers 27/29 were initially 283, end of august were 181 and end of sept were 46...          OK so my questions/dilema come with me not completely understanding it all.         the scan showed shrinkage in sept and wil lhave another pet scan in jan (if damn insurance co will authorize it )..and see onc again than too. 

OK ,so while this is apparently beginning to work and shrink what will happen .. do I just continue like this and leave the boobs on knowing thats where the  initial cancer is ?    shouldn't that be what needs to ahppen??? i seeothers on here who have had chemo right off the bat and more chemo  rad. etc.. I am a little confused  i know i am er/pr positive and that is good.. but I need some more like insight .. my onc is great and i trust her greatly but i want to hear from you all please !!

Comments

  • rosie06ct
    rosie06ct Member Posts: 220
    edited November 2011
    bump hoping for some responses Kiss
  • Racy
    Racy Member Posts: 2,651
    edited November 2011

    rosie06ct, I am not qualified to answer your question but just want to say I'm sorry about your diagnosis and wish you well. It's good that your treatment so far seems to be working.



    I hope you get some helpful replies soon.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2011

    Hi

    I would check out the Stage 4 group-there a lot of very knowledgable people there who have been in and out of treatment and know all the latest research. 

  • paige-allyson
    paige-allyson Member Posts: 781
    edited November 2011

    Rosie,

    I would ask your onc directly what her recommendations are regarding other treatments and to explain your treatment plan clearly. I think ( but am not sure) that they may start with just the hormonal treatment and the treatment against bone mets ( like Zometa), "saving" chemo for later if/when other treatment stops working. You could also see what recommendations are currently out there regarding surgery to remove the primary breast cancer. I know there's been some research on this.

    It's so important to know why you are/are not getting whatever treatments are available. Hopefully your onc will be responsive to your questions as she should be.

    I have noticed a lot of questions posted on these boards going unanswered. Not sure why this is. I'm not among the most active on this site but feel free to PM me if I can be of help. I'm from CT, not far from you. I had most of my treatment at Dana Farber in Boston, briefly went to UConn Farmington, then back to DF- just for follow up now. I still am on letrozole. It's a great drug for women like use with hormone driven BC. All the best to you. Paige

  • nowords
    nowords Member Posts: 423
    edited November 2011

    I think stage 4 is treated differently than earlier stages. ILC usually responds better to the anti hormonals than chemo. Some do respond to chemo...I did not. Rads were given to me as a  stage 3 after neo-adjuvant chemo (that had no effect on the cancer in the breast or nodes) and a mastectomy. I was diagnosed in April of 09, Dose dense AC times 4 in May and June, Mastectomy in July, Pet scan in July that showed all clear, 30 rad treatments in Aug/Sept 09. My treatment was at Mayo Rochester. They were my second opinion location. I take Tamoxifen daily, have every 6th month blood work and physicals, and will have a bone scan in December. I have annual mammo and MRI on remaining breast and xrays of recon side if Oncologist feels it needs a look...I am nearly done with recon, delayed unilateral DIEP. I have mild lymphedema that was improved with DIEP surgery.

    My surgeon thought that after the chemo had no effect, given the size of my cancer - ten centimeters plus...and the positive nodes and extra-nodal extension, that I had perhaps two years until it came back...he thought the PET would show more cancer. It did not. He said that to show up, the cancer has to be the size of a grain of rice, and that is millions of cells...The rad oncologist thought that with current treatments, I had maybe ten years until it is in, most likely my bones, and with current treatments, I could be around five to ten years after that...I am going to take part in the clinical trial next year at the Mayo for the vaccine to prevent recurrence...From what I have learned on the boards here, it is not uncommon to not have mastectomy at stage 4. Get another opinion if you need to, most oncologists think it is a good idea...be comfortable and trust your team of Docs...do your homework on reputable web sites. Good Luck and message me if you want more details.

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited November 2011

    Rosie, I have stage 4 ILC with bone mets. Its standard treatmernt to use an AI and Zometa when you are ER pos.  I have taken Aromasin and Zometa for nearly 5 yrs. This treatment has been successful. My onc told me that unless this would ever stop working, I wont need chemo. I have a friend who had a 10cm tumor in her breast and it disappeared over time with this treatment. There are times when they remove the breast when stage 4 but its an individual decision made with your onc. Feel free to PM me anytime..Hugs, Mazy

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