Anyone with an intermediate oncotype?

I just finished TC X4 !! So glad it was my last one.  I dont' have any regrets with an Onco score of 25.  I was willing to do it to get any possible reduction in percentage of recurrence.  Even 1% was good enough for me.  There was no long lasting risk effect of chemo for me I am told.  It has been pretty tolerable with the Neulasta.  A whole different story without it.  The fatigue is getting worse but knowing this chapter is done and I did it feels great!  On to radiation.  Best of luck with your decisions.  Being in this intermediate range is very difficult.  You have to make decisions with incomplete information.   I decided to choose the thing I would have least regrets over. 

Hi there,

This is a very personal decision and one that I had to go through myself.

My oncotype test came back at 21 - chemo gave me a 3-5% better chance. It was the most agonizing decision I have ever had to make and in the end, I waited too long. By the time I got the onco test back, it was 12 weeks since surgery. It took me another 4 weeks to make a decision (they like to do chemo within 8-12 weeks of surgery). I did sooo much research on the pros and cons, and coupled with my home situation, I decided not to do chemo. I really think I did too much research - Chemo doesn't work on everyone, your cancer cells have to be actively dividing at time of infusion or it doesn't do any good, it only works for maybe 1 out of 10 women, secondary cancers, chance of neuropathy, blah, blah, blah.

I didn't feel good at first about my decision - felt I would always be looking back over my shoulder and I felt quite sick about it - probably should have bit the bullet, but there were personal reasons why as well as logical ones. Anyway, I went to a naturopathic doctor who specializes in cancer and started out on a more natural regime. I now feel much better, much more confident. Who knows if it will help, but it makes me feel I am doing something so I am finally at peace. Am also having radiation done as we speak.

Again, this is a very personal decision. If you have good support at home, that will make all the difference.

Take care of yourself and all the best!

cookiegal, I so understand the infection part. I had 1 chemo treatment. It took my BS 3 months to get the infection under control. By then it was was way to late. With a 24 score I hope the femara does the trick along with life style changes.

I just noticed that none of you had possitive nodes and still many of you did chemo.  I would like not to do chemo.  I worry what it could do to me.  But, tell me more about TC (Taxotere + Cytoxan).  This would be the drug he would use.  What was it like for the 12 weeks?

I have a score of 28, high intermediate.  My chemo starts on Wednesday, and no, I'm not happy about it but I would rather have it now than later when maybe it shows up somewhere else.  My regimen will be one week of Cytoxan and Abraxane and then two weeks of Abraxane.  Abraxane is supposed to have fewer side effects.  Later comes radiation and then hormone therapy.  My main concern is feeling sick and losing hair!  But I got my wig and am ready for it.....

Jane

My score was 19, but I have 2/4 possitive nodes.  Did you have any possitive nodes?  My doc is letting me decide, but what to do???  Chemo, no chemo?

I had no posative nodes, and no lymphatic involvment, yet my Onc. felt chemo was the right thing to do. My BS always felt I should not have chemo. My new Onc. seems to feel chemo isn't needed for me, but must say it is totally out of the question as it is to late now anyway. It has taken 6 months to heal for me.

I have 1 queation what is your age. I'm 57 if I was young wath a family I would totally go for it.

mwasi:  I did TC X 4.  It wasn't a walk in the park but far more tolerable than I expected.  Day 3-5 are probably the worst.  Fatigue and bone pain were the worst side effects.  After that it got better each day.  I also got the Neulasta injection after the 2nd round.  With that, it really was so much better. For the first round, I didn't have it and got fevers, mouth sores, pain, diarrhea, etc.  You name it, I got it. But that neulasta works wonders.   The last 3 rounds were really not too bad.  As I said, I stayed in bed for a day or two and then I was up and around. Took a week off of work each time.  Lots of people brought me food and that was terrific. 

 I am now in radiation.  In retrospect, I don't regret my decision to do chemo.  It is  now behind me and I feel good.  It took a few weeks to get my energy back but now I feel great.   The thing is, we are all looking to our doctors for direction and they all don't say the same thing.  It felt so unfair to have to make this decision.  I tried to educate myself the best I could but in the end, you never will have complete information.  It's just where the research is right now for those of us in this range. They just can't say for certain.  Years from now they will know so much more.  So go with your gut and don't look back.  The chemo is do-able.  If you are going to do it, start and get it over with.  I thought 12 weeks was so long but time did move along and I am done!  Best of luck with your decision.

My Oncotype score was 24, neg nodes.  I decided to do everything possible to prevent recurrance.  I found my lump one month after a normal mammo and the US and MRI only identified the 9mm invasive part, not the 8 cm DCIS that was found on lumpectomy!  It seemed to me that there would be no way to identify recurrance before it became invasive.  Therefore, I had bilat MX, chemo (AC x 4) and am on Arimidex.  Chemo was bearable, Arimidex is bearable.  I was 58 at diagnosis (a year ago). 

My last post should not have that last sentence. It is confusing. I am using my iPad and with this tiny little posting box I couldn't access it to delete it. That sentence is already in a paragraph above.



I want to say how wonderful it was to wake up this morning and have so many responses to my concerns. Thank you so much. I will do chemo now, thanks to that sweet resident who couldn't contain her fear for me and all of you, who are not that much younger than I and brave enough to tough it out.

My score was 17 and I had a micromet in one node. I chose no chemo.

I asked for the Canadian Protocol, 16 treatments at a higher dose. Very doable for me and as long as you slather emu oil 3-4x/day no burning.

Make sure you get the whole 4 page oncotype report. The charts are very helpful.

Admittedly the node positive chart is based on just a few hundred women.

For a 19 with 2 nodes it's close, but you can make a case for not doing the chemo.

Look at the bars on the graph and see if you are comfortable with the margin of error...and where you are on the chart.

The prognosis for 1-3 nodes is worse than no nodes...but the difference is not that great.The margin of error bars are really close.

Well, I am doing chemo. A week and a half ago I decided no chemo. When I saw the radiologist, he inquired about my chemo. I said I am not doing it. The resident blurted out, "oh that's scary!" the attending said to her, "oh no, we never use the "S" word with patients." she was devastated. In a way she made me think about my decision. The radiologist didn't think enough women had been tested to justify changing known successful procedures so I changed my mind. I have 2/4 positive nodes and a score of 19. It would have been an easy choice without node involvement. Tell me how it is and what I can do to relieve the side effects of taxotere + cytoxan. I start Thursday.

I asked the doctor about Neulasta and if I had to wait for symptoms.  I do.  The medicine costs $7,000.00 per injection.  So, maybe I won't need it.  I do have insurance, so I don't know why he told me that.  It is interesting.  Did you take it all three times after your first treatment?