On the fence about chemo

Beth

This is a hard decision-- our dx are similar-I had ILC, 2.5cm-no nodes, clear margins, a couple of isolated tumor cells in the sentinel node.  I remember my onc saying that the ITC's were not what would make her recommend chemo--- they were likely from the biopsy---

However, my oncotype was in the high gray area- 27--- so the decision for me was easy-I did four rounds of AC--- then radiation and hormonal therapy

For me the test was, could I sleep at night.  The data showed that I would drop my potential risk of recurrence from about 14% to about 7%--so it was, for me, significant.  Although, I talked to alot of people who said that they would not do chemo with thos numbers- because a14% also means that there is an 86% chance that it will never come back-- I am more comfortable at 93%, but that is just me...

So, what were the results?  I found the chemo very doable, I worked full-time through most of it, but you have to know that everyone reacts differently.  Radiation was also not too challenging.  I also have young children and for the most part, we got through it. I find the most challenges are with the hormonal therapies-- I am on lupron (I was pre menopausal) and femara-- and have had to work hard over the past year to mitigate the side effects (lots of exercise,etc).

chemo is not fun but many people here have done it and will have input.  With the odds that you have, I don't know what I would decided.  I do know that after I had chemo, there was a study done that said that people with isolated tumor cells should have chemo.  Now it is only one study, who knows, but I know I felt a great sense of relief knowing I had done all I could.

I think you will know the answer when you need to--- what will give you the most peace.  We often make these decisions in fear-but remember, you have had your lumpectomy, the cancer is out--- and as my medical team always said to me"the chances are great that you are already cured, the rest is insurances' and for what it is worth,my onc always said that in her opinion, which I value greatly, the hormonal therapies are the strongest part of the cure..... which is why I am still taking them!!!

Keep us posted

A lady I work with went through CMF.  She said it was very easy except she had one major problem - that was nausea on the day of the infusion.  But, she has since found out that she is exceptionally sensitive to getting nausea. She now doing Zometa infusions and has the same problem with vomiting the day that she gets the infusion and that just isn't a normal reaction to Zometa.  So other than that she had no hair issues and, except for her nausea, worked through chemo and didn't really have any other issues.  None of the normal nausea medicine work for her and that is very, very rare since there are some really good ones out there.

I agree with Deanna comments.  You have to figure out what you can live with and make sure its a decision where you have no regrets.

Dear Beth,

I had Pleomophic ILC, 1.5 cm, stage 1 with isolated cells in one lymph node. My surgeon and oncologist said we need to trust the oncotypedx test and know that chemo isn't for everyone.  I had a lumpectomy, radiation and now Tamoxifen for 5 years followed by Armidex for 5 years.  I am happy with my decision.  I would like to know if any of the ladies had a low Onco score, refused chemo and got cancer back again.  I have not found anyone who has had this happen to them.  Good luck with your decision.

Nancy

Beth ~ Wow, you made up your mind quickly! 

I just wanted to tell you how to find the Natural Girls thread.  Click on FORUM INDEX above.  Scroll down to the section about Tests, Treatments & Side Effects.  In that section, you'll see Alternative, Complementary & Holistic, and in that, Natural Girls.  It's a very long thread, full of lots of great information.

You might also want to look for a thread for women starting chemo this month. Not exactly sure what it will be entitled, but there's one for every month, so it shouldn't be too hard to find.  And there's probably also one just for CMF gals.  I think you'll find both of them lifelines during the next few weeks!

Good luck, and I'm glad you were able to make your decision so quickly.    Deanna

Hi Beth,

I did CMF - finished in March.  I had 6 treatments, each spaced 3 weeks apart.  It wasn't bad at all.  I lost a little hair, not enough for anyone but me to notice, felt no more fatigue than usual and any nausea was controled with kytril pills.  The only SE that was troublesome was constipation.  I suggest you start taking stool softners and senecot (sp) tablets a day or two BEFORE each treatment and continue for 5 or 6 days after.   Also take the anti-nausea meds even if you feel good - I decided that I probably could do without them after my 3rd treatment and had a couple of days of nausea - not terrible, but why endure it if you don't have to?  After the first few treatments I had a stuffy head feeling for a day or two but even that diminished by the middle of treatments.  Hope this is helpful.  Good luck to you!

Kathy

Beth,

Good luck tomorrow.  Will you be given T/C?  That's what I had for 6 infusions.  The steroids that you need to take the day before, day of and day after really did a number on me.  Could not sleep.  Felt wired.  I suggest an anti-aniexty med.  You are being very proactive about your health.  I applaud you.  Stay balanced, in the moment.  You'll get through this.  My last infusion was 12/3/09.  My hair is coming back.  I have a real cute pixie now. 

Remember that the 'poison' in chemo is working FOR you; killing our ruthless enemy, CANCER! 

Wow is all I can say after reading all these posts! What great support

 I am in the same boat as Beth.  I am 39, have 3 children of which 2 of them are 4 and 21 months. I am 39 and just had my second surgery in April.

All I can say is that I really HATE being in this so called "grey area".  I have seen two oncologists, both with two different opions on treatment. One says no chemo but the doctor spends a total of 5 minutes with me.  The other is from the Cancer Agency and says she can't say yes or no due to this grey area but would like to see an oncotye test done.  Unfortunately I am running out of time and have 3 doctors waiting for my reply which should be done today.

 I can't make a decision.  I hate taking drugs unless absolutely necessary.  Much like Beth, I am very confused and I don't know what to do. I have talked to several people and the common responses are: do it. It is your life your talking about. I don't want to second guess down the road and wonder if it will one day show up.  On the other side, I don't have much family, have young kids and 5 students in my home.  Going thru chemo will be very, very rough......

I am suppose to make a decision today and not getting anywhere except more stressed out.....

It has been calming to read everyone's comments and suggestions. 

It is true that ER+/PR+, HER2- tumors tend to respond better to hormonal therapy than to chemo, but there are few absolutes in cancer treatment. Taking the oncotype test might help you make this decision with more confidence, because the score reflects how effective chemo is likely to be on your specific tumor, and you can get a clearer sense of risk versus benefit.