It's Back! 15 years later and limited medical choices

sweetsigns
sweetsigns Member Posts: 3
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I was stunned to find another lump in my breast 15 years after completing treatment for a stage 1 non invasive, is situ cancer; lumpectomy, lymph node dissection, radiation and chemo. At this time, I am on a community health insurance plan because I am unemployed and could not afford better coverage. I say this because I am limited in who I can go to for treatment. I am concerned about the surgeons attitude of non aggressive action.  So far ( no surgery yet) the only thing I know about my diagnosis is that it is Invasive Ductile Carcinoma, moderatley differentiated, grade II of II.

I fully expected to be given the option of a unilateral or bilateral mastectomy (the cancer is in the same breast as before) and the surgeon simply said the bilateral was unnecessary.  When I met the plastic surgeon he not only said I had a choice, but also explained the risk of reconstruction on a previously radiated breast.   We did go through a scare when a spot was seen on my lung in xray, but it turned out to be scar tissue (former smoker here).  But after that terror, I have elected a bilateral mastectomy with immediate reconstruction (smaller than normal due to radiation issues).

But the surgeon also made other comments that made me unsure that I am being offered the best course of treatment. 

He seemed to brush off the need to test lymph nodes because it was done before. Everything I'm reading says that lymph node testing is needed to determine the stage of the cancer which then determines the treatment. 

He also said he didn't think I would need chemo and they gave it to me before because I was young! (45, I'm 60 now). Everything I'm reading says that chemo is the recommended treatment for every breast cancer.  I m not begging to go through that hell. But, I don't want to have a future recurrence and not feel like I have done everything possible to prevent it.

I have a pre-op appointment with the surgeon on Tues and want to be sure I ask all the right questions.  Any advice appreciated.

Thanks

· Share on FacebookShare on Twitter

Comments

  • Mag8yearsurvivor
    Mag8yearsurvivor Member Posts: 24
    edited June 2013

    I am sorry to hear your news.  Mine just returned after 8 years.  When I found the mass, the first person I saw was a surgeon who was anxious to operate.  My oncologist slowed him down and did scans.  The BC is also in my bones, so surgery is not really a good choice.  Why operate on one site, when the others will still be active?

    I would talk to your oncologist.  Not a surgeon.  And with a recurrence, talk to Social Security Disability.  I was just approved for SSDI, retroactive to 6 months before I noticed the new lump.  Medicare will kick in in 2 years, so you don't want to wait.

    Hang in there!

    Mary Ann

    · Share on FacebookShare on Twitter
  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited June 2013

    Sweetsigns I'm so sorry to hear of your recurrance - that just sucks.

    You'll find things have changed a bit since your first treatments.  If your tumours are lower grade then chemo is not a given.  These days for non invasive tumours chemo isn't given at all unless they are HER2+, then chemo is given as it is protocol when given with Herceptin.

    If you've already had your lymph nodes "tested" with the previous cancer, then a Sentinal Node Biopsy may not be able to be done, as it may have been removed already with the first surgery.  The only thing that could be done now is to remove lymph nodes while surgery is being done and having those tested.

    Most surgeons opt for a less radical approach these days and do not agree that bilateral mastecomy is necessary or needed.  Some will listen to their patient's concerns and agree if it is something that a woman pushes for.

    I had two different tumours in the same breast - one was invasive ducatal carcinoma (IDC) and the other was invasive lobular carcinoma (ILC) I didn't have the choice of a lumpectomy as there wouldn't have been enough breast left anyway.  Although my IDC was 2cm in size and grade III there was no automatic assumption of chemo.  In fact my case went before a tumour board and the agreement from all was that if my tumours weren't HER2+ I would not need chemo.  Unfortunately one was HER2+ so that took any decisions away - I had to have chemo as well as Herceptin for the HER2+ diagnosis.  HER2 status isn't determined until after the mastectomy and takes a while to do - around 10 days typically.

    I hope this makes things a little clearer for you, but make sure you ask your doctors all the questions you can think of.

    Trish

    · Share on FacebookShare on Twitter
  • sweetsigns
    sweetsigns Member Posts: 3
    edited June 2013

    Thanks for the quick response. I guess the big question is when do I get to see an Oncologist.  I assumed the surgeon makes that referral?  I am on SSDI because I am profoundly deaf.  I have adult onset deafness which contributes to my employment isssues.  My medicare will be effective in Feb.

    · Share on FacebookShare on Twitter
  • sweetsigns
    sweetsigns Member Posts: 3
    edited June 2013

    Thank you so much for the updated information.  I actually read the chemo treatment recommendations for the different stages on this website.  http://www.breastcancer.org/treatment/planning/cancer_stage   Am I correct that the other factors of my diagnosis, staging etc come after surgery?  Fifteen years ago is such a blank!

    · Share on FacebookShare on Twitter
  • SheChirple
    SheChirple Member Posts: 954
    edited June 2013

    Do not hesitate to get a second opinion.

    Doctors give recommendations, you make decisions.

    Best of luck.

    · Share on FacebookShare on Twitter
  • FireKracker
    FireKracker Member Posts: 8,046
    edited June 2013

    and bring a tape recorded.No one can remember everything.

    Good luck.

    · Share on FacebookShare on Twitter
  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited June 2013

    It's all so complicated now.  Yes - pretty much all the staging, treatment plans can only come after surgery, as the pathology on the acutal tumour has to come once the tumour is out.  They'll also try to locate lymph nodes while doing surgery to see if they can find any that might be affected.

    You'll deal with your surgeon first, and once the pathology is in an oncologist decides what your treatment will be.  Well - that's how they do it here in Australia - not exactly sure it's the same in the US :-)

    Trish

    · Share on FacebookShare on Twitter

Categories