To have or not to have Chemotherapy

[suzieb54]

I was diagnosed with Stage 1 0.9cm, grade 3 Infiltrating Ductal Carcinoma. ER/PR neg. HER2 pos.   I am due to have a bilateral mastectomy and immediate reconstruction in next couple of weeks and have now been informed I should have chemotherapy and  Herceptin treatment after the wounds have healed.  I really don't want to have the chemotherapy as the thought of it terrifies me.  Does anyone know the survival statistics if I didn't have either or if I had the Herceptin alone please?  I need to be fully informed before I make my decision.  Many thanks

[bluebutterfly2222]

I understand that you have numerous personal circumstances that make you reluctant to undergo chemo, but I agree with Cheerpul--your best chance to beat this disease is to treat it very aggressively.

The most recent recommendation is that those with even very small ( 1 cm or smaller) HER2+ tumors be treated with both chemo and Herceptin, due to the high rate of recurrence with this very aggressive type of BC:

"From the San Antonio Breast Conference in December, new data shows a higher than predicted rate of breast cancer recurrence even with very small breast cancers that are HER2 positive. The data is from the first large study to analyze early-stage breast cancer patients with HER2 positive tumors one centimeter or smaller. All these women would benefit from adjuvant Trastuzumab, also known as Herceptin, (for one year, the standard in America) - along with adjuvant chemotherapy. This represents a shift in the way women with early-stage HER2 positive breast cancer should be assessed for risk of recurrence and considered for treatment, according to the study's author."

http://www.*************.com/breast-cancer/c/87/58852/chemotherapy

Best wishes, whatever your choice.  And please keep us updated regarding how you are doing.

[suzieb54]

Hi there! Thanks for your info and advice.

I have finally made my decision based on my own research and what the oncologist told me (which incidentally turned out to reach the same conclusion).  Apparently the chemotherapy regimen they planned for me is FEC and will only extend the survival rate of 100 women of the same age and same case history as me by 8.  The Herceptin MAY add one or maybe two women to this statistic.  

I have done as you suggested and considered chemotherapy.  I cannot deny that the thought of it terrifies me but it isn't that alone; I had to consider my personal circumstances when deciding. 1) I live alone and have only the support of my friends who are marvellous but they do have their own lives and other commitments. 2) I need to get back to work as soon as I can because of financial problems. I work with the public; a  high proportion of our clients have infections.  3) I have been ill with adjustment to new diabetes medications in the four months prior to my diagnosis of breast cancer. 4) I have had an immense amount of stress in my personal life for several years with a young adult son who has behavioural problems and is a drugs user.  It is for these reasons that I have decided to not have chemotherapy at this time as I think the mental strain and physical discomfort will outweigh any possible benefit.  I am due to have a bilateral (preventative) mastectomy with immediate reconstruction on Tuesday.  I hope all goes well with your second one.  Thanks again for your help. Stay in touch.

[Cheerpul]

I had a .5 cm, stage 1 ER/PR+ Her2 positive tumor removed by mastectomy a little over a year ago.  There are few studies that tell you survival statistics for small tumors and Herceptin treatment alone.

Open your mind to embrace all treatment options without fear.  Chemo is not nice, but cancer is worse.  Chemo is temporary, cancer may not be.

I took the OncotypeDX test and scored a 31.  That test may help you determine a better idea of your risk.  I chose, after much study and discussion with my surgeon and two oncologists in large teaching and local hospitals, that my best chance for beating cancer would be to take chemo and Herceptin.  I took taxotere, carboplatin and Herceptin 4 of 6 doses (I stopped early due to unusually severe side effects, especially neuropathy of my hands and feet.) but continued the Herceptin and also Zometa as part of a drug study to see if osteoporosis drugs help keep cancer from coming back as bone cancer.  I am also taking Tamoxifen (daily pill) for 5 years.  Today I have my next-to-last Herceptin.

My advice, based only on the tumor characteristics you listed above and my own study and experience is to consider chemotherapy.  I think it will give you your best chance to beat this disease.  I was quite ill for 4 months, worked full-time and sang in two choirs (very important to my psyche) had nearly every side effect known plus a few odd ones, and slept most of the time that I was not working.  I started chemo last Dec. 29 and by the end of April was working two jobs 75-80 hours a week (doctor bills, you know) and feeling pretty well.  My immune system and digestive system took a bit longer to return to normal and I am still working around the neuropathy.  Although, I hand-sew and play piano even with numb fingers.  Standing for more than 2 hours straight is hard with my feet, but usually I can take a short break.  

I am meeting with my surgeon this morning to set the date for my second, preventative mastectomy and will figure that I have done all that I can do at thiis time.  Don't let fear of chemo enter into your decision.  Most people have a far easier time of it that I did, according to my doctors, and I am over it and back to my life in way less than a year.  

Feel free to stay and touch and I and others will help you all we can.  I am thinking of you.