In Grey Zone & Confused about Chemo

Hi livelovelaughalot!

I hear your pain.  Funny, I was diagnosed with breast cancer in July as well.  Strange how you feel like the only one for a bit!  My situation is a shade bit different from yours, but I have chosen against chemo.  The reason?  I'm 38 without a husband or child and the risk of losing my limited fertility to chemotherapy supported my decision.  Oncotype is not routinely done here in Canada so I don't have a score.  I could have done the TaylorRX study to find my score, but the risk of having to have chemo if I tested high or moderate made me decide against it.  

My tumor was 70% DCIS the rest being infiltrating.  The tumor was stage 1, Grade1, 1.6cm, 95% estrogen/progesterone receptor positive and negative HER2 status.  I will receive 6 weeks of radiation therapy (28 sessions) and five years of Tamoxifen (the only drug for premenopausal women).

I think if your plan is for another child, you should stick with the decision you feel most comfortable with.  It's hard not to second guess yourself.  I told myself that if I already had a child or was post-menopausal, I would have chosen chemo.  My oncologist has supported my decision and I couldn't be happier!  It's hard not to think "what if?" a lot of the time.  But what if I have chemo?; will it destroy my limited fertility.  What if I don't get chemo?; will I have recurrence?  It's like being a ping pong ball!!!  It's helpful that you have a partner to help support your decision making.  

I guess knowing your risk of recurrence is a little like playing the stock market.  You just never know.  Wish I had a crystal ball too.  My oncologist did make an interesting comment as we discussed fertility.  Tamoxifen was once used in a study for a type of birth control and it completely backfired!  A lot of the subjects became pregnant instead.  How bizarre, but it made me feel better about having a child at some point.  He also said I could stop the drug at any time if I decided I wanted a child.  

 Hope this discussion helps you.  These decisions are hard and you aren't alone. Best of luck!

livelaughlovealot, something else to consider is if doing the chemo will make you less likely to follow through on the Tamoxifen.  I have seen many women that do chemo, then decide that they don't want to do the Tamoxifen, or are lax about taking it.  There is an article on compliance rates on the Susan G Komen site http://ww5.komen.org/ExternalNewsArticle.aspx?newsID=42817 that shows that women who are non-compliant with Tamoxifen have an 87% survival rate compared to 96% of women who are compliant with Tamoxifen. 

That is a choice you will need to make every day for 5 years, but is probably your best option to see your little guy become a middle aged adult.  If doing the chemo is likely to compromise your commitment to following through on the Tamoxifen, then it is definitely not worth the risks. 

You know yourself better than any of us do, and you need to make the decision that you can live with for a very long time.

http://www.bio-medicine.org/medicine-technology-1/Three-Clinical-Studies-of-bioTheranostics-Molecular-B

Go to this article and read the new information about Theros Breast Cancer Index and the reclassifying of low. intermediate and high recurrence scores of the Oncotype DX.  

This new test moves some of the  intermidiate into the  the lower recurrence and some into the higher recurrence.  I assume that if you are close to the low recurrence that you would stay in the low recurrence with more of the intermidiate scores above your score moved to the low recurrence bracket and if your score is closer to the high recurrence yet in the intermediate section that your score could be moved into high recurrence.  Thus, the shrinking of the intermediate section.  

 I sent a e-mail to the contact at the end of the article.  Hopefully, your oncologist will be familiar with this new development.  It was discussed at the San Antonio conference I think during December 2008. The article should discuss where the information or abstract was presented. 

My dx is different from yours, not sure if it shows up on this post a reply format.  Stage 1 grade 1 NO MX absent vascular involvement.  Also, another point, your recurrence score is lower than the average women in the general public for developing breast cancer.  1 in 7 women will develop the disease this year.  That is 14% chance of contracting breast cancer in the general public.  You are doing better than you think at 12 % recurrence rate. Did your oncotype dx talk about whether chemo would be beneficial to you? 

Remember there is so much on going research with breast cancer.  Tomorrow something could come up that will resolve allot of unanswered questions. For example, there is a test that has shown great promise that reveals whether a breast cancer  spread.   It is not available commercially, yet.   But will be soon.  So, do good research and talk with your oncologist about the new developments.  Knowlege is very powerful and helps you get control over the decisions you will need to make for yourself and your family.  

 I first was diagnosed with BC at 38yrs with stage 1, 1.6cm, grade 2, ER and PR positive, Her 2 neg and with an oncotype score of 15.  I decided to do bilateral mastectomies and just tamoxifen.  That was in 2007, last week on October 22, I was diagnosed with a recurrence in the same breast. Needless to say, we will be throwing everything at this one.  Good luck on your decision, it is a tough one.

Kelly 

Lindissima ----ummmmmm you raise a very good point.  In my education from my team of doctors and one nurse navigator and group sessions, the recurrence rate where ever it is whether locally, regionally or in other parts of the body is still a recurrence of the breast cancer.  I will be checking with the professionals that explained to me-I possible could have misunderstood.  My research talks about a mets to the liver as being a recurrence of breast cancer in the liver not liver cancer.  So, now I am questioning my team??  My intent is not to mislead anyone.  If I have mis-spoke, I will apology to Liveloveoveandlaughalot with the new explanation from my professionals. 

I discussed the recurrence score with the Oncytype dx customer service and was informed that when using a AI, the recurrence score would be lower.  I do know there has been an established absolute risk reduction between Tam and AIs of 2.6% to the patients benefit. My recurrence score, using and AI, drops to 8%.  Thus the explanation that it is lower than the general public risk of developing breast cancer - even at the Tam recurrence rate of 10.5 the risk for recurrence whether local, regional or distance is very low according to my oncologist.  I will get more clarity on the statement from my oncologist. I  will post when I get a clear understanding of my understanding of what constitutes a breast cancer recurrence: local, regional and distant.

I just pulled up the site you requested before answering your post. It came up fine???   I will send you more information on the article so you can access it in another way.   

HI

im 45 yrs bx august09  IDC 3CM GRADE 2 STAGE IIA PR+ER+ HER2- 

my onco said to me if i just had surgery and no treat my chance of recc was 80 % in 5 yrs and if i just whent with rads only then it whent to 50% chance of recc in 5-10 yrs or if i done rads and horm treat my chance of recc in 5-10 yrs is about 30% and if i added chemo to that it then was 18% chance of a recc in 5-10 yrs i might be out by a little but chemo brain has set in i will do everythink i can do  not to go through this shitty thing again my first surgery wasnt a clear margin so in for second opp and my lymphs were all clear   there concern for me was my young age farly large tumor and that it had spread and he said it was mod to high grade i figure its a year of fighting then ill get back on track with life 

all the best Joanne

Hi livelovelaughalot

The decision will be yours ultimately, and your oncologist, I too would agree with getting a second opinion.  I had dose dense AC x4 every two weeks, followded by Taxol (dd x4) now on rads for 6 weeks then tamoifex.  My IDC was 2cm, with 0/11 lymph nodes, clear margins and no vascular invasion (ER+/- PR-, Her2-).  However, it was grade 3 so chemo was clearly the option.  I am 51 fit and heathy and have 2 children.  My advise to you  would be to get a second opinion.  Whilst the oncotype score is usefull it is not definitive.  I would explore the 'lymphovascular invasion' comment more carefully with your onc.  It is possible that a few tumour cells sneaked through (via the vascular route) or through the lymph node and did not hang around.  Purusing this Board, you will unfortunately see the down stream development of mets, in IDC (small tumour, often low grade and without node involvememnt).  I would deal with your BC first and then when you are clear (and with advise) you consider having more children. Perhaps it is discussed elsewhere on this forum (I am an occasional contributor) but pregnany immunsuppreses the immune system (and years ago was definately not recommended for women with BC, as it could lead to a secondary event).  Again much could have changed with treatment since I last read about this (I am an immunologist by profession) but it is worth a chat with your oncologist.  You are young and fit, chemo (even dose dense AC) is doable.  I worked throughout, with two days off for chemo and recuberation each session

My Oncotype score came back as 14 and I was also considered in the grey area.  When the oncologist ran the numbers, the statistics showed that I was 85% likely not to have a recurrence if I did absolutely nothing at all after the surgery.  If I did either chemo OR tamoxifen that number went up to 91%.  If I did chemo AND tamoxifen it went to 95%.

I opted for doing both because I want it dead and don't want it coming back (life has no guarantees, but I still have to try).

One of the things that factored into my decision was my age.  I am younger and more healthier now to tolerate the chemo, etc.  If I bypassed the chemo and tamoxifen and have a recurrence, I will be older and might not be as healthy.

I would be inclined to do the chemo now and wait the time on having another child.  I wouldn't want to risk a recurrence 5 or 10 years from now when my children really need me.

My advice?  Take care of yourself now.  Your family loves you and needs you and I'm sure they want to have you around for a very long time.

Good luck with your decision! 

livelovelaughalot

After extensive research created by your radiologist comment of adding the oncotype score to the general public rate of developing cancer to determine a persons real recurrence rate, every person I interviewed, whether they be an expert, oncologist, radiologist, represenative of a gene testing organization, research stats department, not one person, with all their cummulative years of reporting stats results, has every heard of adding two risk probabilities together to get another new risk probability. 

The reason I am posting the results of my research finding is that if a new person, knowing little about recurrence rate, with a Oncotype DX test score, were to read your radiologist comment, add to their score 14 more percent, it would scare the heck out of them, needlessly.   

What your radiologist is suggesting is a higher recurrence rate over and above the Oncotype DX score which would throw most low risk women into the chemo area creating alot of needless worry.  Oncotype DX is on the biology of the tumor - general public risk has other considerations that produce the 1-7 risk of developing breast cancer. 

I would like to know the science behind his thoughts.  Hopefully, he will share his knowledge and the study, with a 95% confidence level, so we can all mull it over, again.