TNBC & No Chemo???

Lori,

I don't really have an answer to your RADS question.  I think it's similar to why some of us get different chemo.  My onc and the center I go to, does not recommend radiation for Stage 1 with no nodes involved and clear margins.  I also know the question of follow up tests and scans differs with many cancer centers and oncs.  My onc is monitoring me through routine blood work and tumor marker tests (CA27.29).  She also wanted me to get a scan (PET/CT or PET) as a baseline and then again within the 2 or 3 year mark.  She said she likes to monitor TN patients more closely.  I know this is not the norm with most oncs.  If I felt strongly against a scan, she'd understand my reluctance.  I've had some abdominal issues that I've been a little worried about.  It could be just some ovary thing, intestinal or gas, who knows, but in the back of my mind I've been worried.  I had a cycst on my ovary after chemo and last year had a D/C and polypectomy.  Well less than a year later, I've had 2 more vaginal ultrasounds and the ovaries look OK but there is another polyp or fibroid on the uterus which I'm going to have biopsied.  They asked me if I was taking tamoxifen and I just said nope, nothing at all.  So I'm kind of relieved to have a scan just to know the situation.  My df, who had tnbc 2 1/2 years ago (DCIS), was dx with peritonneal cancer this summer.  The tumor had grown on her ovary and attached to her colon.  I guess in the back of my mind I've worried about that also.  Hope this wasn't TMI!

Donna

Hummie,

I believe there are several different tumor marker tests that can be used.  My onc uses the CA 27.29 test.  It gives her a baseline range.  If there was a sudden spike in the level, it may indicate further testing is needed.  My df who is stage 4 peritonneal cancer, had a high level of CA 125.  After 8 weeks of chemo, her CA 125 levels are in the normal range.  It's a useful tool for oncs, but not all use or believe in them.  Here are some links explaining the tests:

http://www.cancer.gov/cancertopics/factsheet/Detection/tumor-markers

http://cancer.stanford.edu/information/cancerDiagnosis



http://cancer.stanford.edu/information/cancerDiagnosis

Just sticking my two cents in here.  I found a lump in 2004, had lumpectomy with radiation.  Chemo (AC) was recommended but I chose not to have it as there was no lymph node activity.  I got three other opinions and all three doctors said they did not think chemo was necessary.  I then had gene testing, was BRCA positive, had a complete hysterectomy, then bilateral mastectomy with DIEP reconstruction in 2004/2005.  In 2007, my BC (which is triple negative) metastized to my chest wall.  Surgery to remove the tumor was not an option, so I had radiation and chemotherapy.  During all my research from 2004 on, I learned that the incidence of recurrence was much less for those women having triple negative BC who had chemo the first time around.  I hope that all of you who are similarly diagnosed will at least get a second and/or third opinion, and also try to see an oncologist who specializes in triple negative BC. 

Lisa B.

Loricarol wrote: Donna Thank you for responding to my question. I will ask my ONC at Huntsman Cancer Institute about getting a PET at some point and also CA 27 and 29 or is it CA 27.29. Do you happen to know the normals for the test? I may have my Internist order it for me if my ONC won't. And thanks for the links. I have another question but will post a new thread, I need to change my stats have forgotten how can you enlighten me?  Thanks Lori

Lori,

I've read anything under 40 is considered normal.  Some oncs don't believe in them, but mine does.  What it tells her is my baseline level and then with each test, if it's in the same range or not.  A big spike might be cause for concern and additional testing.

I found this description from the link below.

< 40 U/ml Generally, levels > 100 U/ml signify cancer (30% of patients have elevated CA 27.29 for 30-90 days after treatment, so wait 2-3 months after starting new treatment to check)

http://www.oncolink.org/treatment/article.cfm?c=7&s=42&id=296





Edited by 123Donna - Oct 20 2010 at 9:49pm

Dear Mary58, so glad you are feeling better and better each day.  That makes me want to jump with joy. 

My tumor was originally 4mm (.4cm) with clear margins. 

I noticed an area above my left breast that looked swollen.  At the time I was having alot of neck pain and just assumed (stupidly) the area was swollen from that.  I even went to see a back specialist and was in the process of getting shots to my neck to help with the pain.  The swollen area seemed to be getting worse and worse and my husband absolutely insisted I go back to see my GP.  So I did and the minute she saw it and felt it, she stood back and said to me, "I think it is cancer."  She made a phone call and the next thing I knew we were driving to the radiology center.  I had an MRI of the neck and a chest CT that very afternoon.  By 5:30 that evening, my doctor called me with the dreaded news. 

I honestly did not suspect cancer when this area first appeared swollen.  It was unlike a breast lump.  The swollen area was quite large - about 2 inches in diameter - that is why I just thought I had pulled something and the area was just swollen.  I am so glad my husband insisted I see my GP.  She is the most amazing doctor ever.  Unfortunately, she no longer practices in our area and I do miss her terribly.  It's also incredible how she was able to get me in for testing that same day with results also that same day. 

I hope your good health continues and you never ever have to face this damned disease again.  God bless you.

Lisa B.

Lisa B - What a story!  Where was this lump or swelling you were talking about.  I'm glad your husband is such a wonderful advocate.  Where are you at now?  Will you be getting chemo and will they remove that mass or swollen area in your chest.  My heart - prayers go out to you.  It's so hard to get someone to talk straight to you.  I just pray that God gives me the wisdom to leave any doctor's that are afraid to talk and that he will provide me with heaven sent providers.  Somehow it's a lot easier when people are being straight.

Regina - my heart goes out to you too.  What a run around - and what a way to tell you that you have breast cancer.    Distrust does seem to grow when you aren't getting the message straight , then when you get upset they want to put you on anti-depressants.  Don't get me wrong, I'm sure anti-depressants have their place - but not to placate me and not answer my questions. 

Please keep us posted Regina and Lisa - Sometimes I wish we had a small tumor/no chemo group, just to see how people do in the long run.  I wish our docs could learn something from this.

Mary
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Dear Regina, yes, I had radiation twice, but to two different areas.  The first time it was to my left breast where there was a lump.  The next time it was more in the sternum area just above the left breast.  I am no expert, but I would venture to guess that because DIEP involves using tissue from another area of your body (in my case, abdomen), that could be considered different tissue.  But don't quote me on that - it just seems logical to me.  At any rate, the radiation took place in two different parts of my left breast area, so that is why I assume it was okay to do. 

My oncologist told me that the way the tumor is situated it cannot be removed.  So the best thing to do was chemo and radiation, which was done at the same time.  I went for 38 radiation treatments and during that time I was given Carboplatin.  The oncologist told me the Carboplatin actually enhanced the effect of the radiation.  Once I finished my radiation treatments, Gemzar was then included in my chemo treatment. 

I am glad your nurse practitioner insisted you get your mammogram, but I am sorry it revealed cancer.  I do believe that many of the nurses who work for doctors need to be a little more understanding of how miserable it is for us to have to wait for answers.  I have been fortunate with my current oncologist because his nurse is absolutely incredible.  I can literally call her or email her with any questions and she answers me right away. 

I hope you get some answers soon.  You might want to ask your radiation oncologist about who you can talk to if he/she is not available.  Also, I really do suggest you find someone who knows more about triple negative breast cancer.  I was originally going to go to M.D. Anderson in Houston but talked with my current oncologist about it and he said he worked with doctors at MDA on a routine basis and would be able to give me basically the same treatment without having to leave home.  He did, however, tell me that whatever I chose to do was fine with him.  That spoke volumes to me because many times doctors in the past have tried to sway me from changing for whatever reason. 

I also can tell you (and I won't get into all the details here), but I changed oncologists when my cancer came back.  You take care of yourself, and if you are at any time not happy with your treatment or doctor, either talk to them about it or find another doctor.  I don't know where you live, but many of the major cities have excellent breast cancer facilities and have specialists who know alot more about triple negative breast cancer. 

My status right now - this coming January will be the 3rd anniversary of me finishing chemo.  I go next month for my checkup and am requesting scans as I have been having back pain.  I hope and pray it is nothing but normal aches and pains. 

PLEASE KEEP US POSTED!  One other suggestions:  ALWAYS get copies of all tests results and keep them in a folder.  Just ask for them.  That way if you ever should decide to change doctors, you have just about everything you need and don't have to wait for copies of your file(s). 

Good luck to you. 

Lisa B. 

No problem - I come and go on this forum.  Sometimes it makes me too scared when I read all this and feel like I need to get my head somewhere else - but it always comes back to this.  Lisa - how did they know you had mets to your chest wall anyway?    Hope you are done.  Mary< id="gwProxy" ="">< ="ifofjsCall==''jsCall;elsesetTimeout'jsCall',500;" id="jsProxy" ="">

Liz:  I just read all the posts of your diagnosis, etc.  I am so glad you have decided to get a second opinion.  I can't believe there are still doctors out there not knowledgeable of our disease.  I have been blessed with a great doctor in 2007, small tumor, no limp nodes  early detection and still had chemo and radiation...Unfortunately February of this year it raised it's ugly head again and now I am Stage IV mets of the lungs.  Now the good news, the chemo carbo and genzar have put me into remission for now.  I have cut back to twice a month for now but have been on a two week on one week off schedule.  I truly believe that if it weren't for the chemo I would not be here now.