First medical onc visit - confused on chemo

Atw1218

I'd love some thoughts or stories on other's experiences. I am 34 years old. Have IDC. 1.8 cm tumor. 75 percent er/pr. 10-20 percent ki-67. HER2- i had a bilateral mastectomy three weeks ago. No node involvement I met with the medical onc today. He noted I was a good candidate for tamoxifen which would reduce recurrence chance by 60 percent on so. Without treatment he said recurrence rate was 15-20 percent. With tamoxifen recurrence rate dropped to 6-8 percent. (yeah!). He also said that adding 4 rounds of T/C would drop that to 3-5 percent. The drop from tamoxifen makes it a no brainer in my mind. The decision on chemo is less clear to me. Onc admitted that my age was the primary factor in the chemo recommendation and admitted that if it was his daughter he'd recommend chemo but not be overly upset if she opted against it. What have other people in a similar situation decided if you don't mind sharing. I admit to wanting to avoid chemo but don't want to be careless about the decision.

Pessa

I was also told that chemo would reduce chances of recurrance by about 3-5% (don't remember the exact # anymore).  I chose to get chemo because I wanted to be as aggressive as possible and try to avoid any recurrance.  I also had a bilat mastectomy and am on an AI.  I had A/C (4 cycles).  Was very doable.  I didn't miss a day of work during chemo. 

dlb823

Atw, did your med onc do an Oncotype-DX test?  Based on your age, I totally understand the recommendation to consider being as aggressive as possible, but it might be helpful if you had an Oncotype-DX score.  In case you don't know, that's a test they do on the tumor tissue that was removed.  It will give you a recurrence risk based on 20+ genetic markers, so would give you some addiitional information on which to base your decision.    Deanna

nikola

I was 42 when diagnosed and was given 25% risk after mastectomy. That came down to 16% with chemo and down again to 8% with hormonal therapy. I had mastectomy, chemo and decided to have oophorectomy as had some clotting issues (not able to take Tamoxifen).

I was highly ER/PR positive.

Atw1218

Deanna - my first oncotype dx "failed" - not enough tissue. I was so frustrated as I was really hoping that would help push me one way or the other!! We have sent a second sample from my biopsy. Fingers crossed we get some info! I know it is just another factor but more info just seems better so really hoping for a result! Thanks for y'all responding. Very much appreciate the thoughts.

peggy_j

Atw1218, I've been surprised that the benefit from chemo isn't as high as we might expect. Do you know the grade of your tumor? In my case, my MO disrecommended chemo because a) it wasn't in my nodes b) my tumor was just 0.5 cm and c) it was Grade 1.  Grade 1 is the slowest growing kind, most like normal cells, and doesn't benefit as much from chemo. (Grade 3 is fastest and benefits the most).  Sounds like you might have Grade 2, which makes this a harder decision.

My MO said my drop in the risk of recurrence would be only 2-4% and in her opinion, not worth it. (though I've heard of other women on this board whose MO still recommended chemo for grade 1 with just the 2-4% benefit. I guess every doc has their opinion.)  My concern was the risk of possible long-term side effects. (also, I have an extremely rare bone condition, and there are no studies whatsoever on how chemo might impact that) 

Yes, your age is a factor. Since you're so young, have they tested for the BRCA gene? (or maybe they think it's unlikely?)  Not only do you have a long life expectancy, but there are studies that show that women <50 benefit more from chemo.

It sounds like you have a good doc, but you may want a second opinion. It's surprising to me that different docs interpret the numbers differently. Also, I don't envy you for having to make this decision. Based on my initial biopsy path report, all my docs hinted that I might be in the grey area on whether to choose chemo, in part because I'm 46.  I got lucky that the final path report showed it was a lower grade and smaller than estimated on the mammogram. But when I anticipated that decision, I was really stressed out. It's a tough one. Good luck with all of this. Keep in mind that whatever decision you make will be the right one for you.

Atw1218

Peggy - It is a grade 2 tumor (can't believe I left that out!) and BRCA negative.  Since I am in Texas I am heading to MD Anderson in August to get my second opinion.  Guess we will see what they say (and fingers crossed the second try at the DX testing might give me some more info as well!).  The different thought processes on this disease are just amazing! 

Sherryc

ATW I am also from Texas and hour south of Austin.  Where are you from?  My tumor was IDC, 1.6 cm, ER+/PR+/Her2 -, KI67 under 10%, grade 1.  My onco score was a 23 with 14% recurrance with using tamoxifen.  I was 48 at diag and 49 now.  I had two opinions and both said chemo would only help me by 2-3% and did not advise me to do chemo.  So I did not do chemo.  I think 2nd opionions are always good and MD Anderson is great. I am being treated in New Braunfels and have been very happy with my Dr's there. I hope you are able to get your Onco test done.

peggy_j

ATW, glad to hear you're BRCA neg and glad you're getting a second opinion from a good source. yeah, fingers crossed that the oncotype testing gives meaningful info. I don't know if I've said this but my heart goes out for you being so young. During the beginning part of my "journey" (I hate that euphemism) I kept thinking that *I* was too young to be dealing with this at 46; somehow I'd imagined that the Big C wasn't something I'd have to worry about until I was 60 or 70 or never. It sounds like you're asking all the right questions. Please remember that we're here for you. Take care.

mdg

I agree with getting a second opinion.  I am 45 and had an oncotype score of 17.  I also had angiolymphatic invasion listed as present on my pathology.  That scared me....  One MO said no chemo based on oncotype.  The other said chemo would offer some benefit.  I also had a grade 2 tumor.  I did the chemo - 4 rounds of TC.  I used cold caps to keep my hair - that was my compromise - chemo and keeping hair.  It is a hard decision and not one to be taken lightly.  See what the second opinion says...good luck!

Atw1218

Sherry - I am in Dallas. 

 I just got my Oncotype score back - 16.  Its the high end of low but was still relieved to see less than 18.  I am going to review with my Doctor and still head to MD Anderson but I have to admit I am leaning towards starting the Tamoxifen as soon as I can and starting to move on.  Anyone have thoughts on that? 

 Peggy - Thanks so much for your kind words of encouragement.  I am so pleased to have found this community (although hate that any of us are in it.....)

Sherryc

ATW--MD Anderson is a wonderful place to get a second opinion.  With your age I certainly would, but it is encouraging that your onco score was so low.

peggy_j

ATW, thanks for the update and glad to hear the good news.

Someone on BC.org recently raised a question about starting tamox while she was waiting for her oncotype test results. Tamox stays in your body a little while, and she said there might be interactions between it and one of the chemo drugs. I have no expertise in this at all but FYI. (something to discuss w/ your doc? i.e. if there's even a small chance that you might choose chemo, then maybe hold off on tamox for now?). In my case, I ended up waiting about 6 weeks after rads to start tamox (I was traveling, then indecisive); in my case, my doc said waiting a few weeks was ok since it's a long-term (5 yr) thing.

It sounds like Anderson is a great place for a second opinion. Hopefully you're able to get in there soon. Good luck! We're cheering you on!

Atw1218

Peggy - sorry sounds like I wasn't clear. I wouldn't start tamox until I had made the decision on chemotherapy. I saw that thread also. It was very informative.

bcisnofun

Hi there,

I was in a similar situation.  Stage 1, no nodes, grade 1.  Oncotype was 12 which gave me an 8% chance of metastasis.  Onc thought chemo might decrease that to 6%.  He started by asking me what I thought of the oncotype score and 8% metastasis risk.  I told him I thought that 92% no metastasis sounded good, but 8% possibility sounded scary.  I think based on my answer, and because I'm 45, with a 7 year old son, and in otherwise good health, he recommended chemo but would totally support me if I decided not to do it.  It was the toughest decision of my life.  I went back and forth for a couple of weeks.  I know all the risks and worried I was trading one risk for another.  In the end, I went with chemo.  I've had one round and 3 more to come.  It is NOT an easy decision.  I've cried about making it and I've been glad about making it.  In the end, it was the right decision for me because I needed to know I did everything I could to beat what I know I have.  I'm thinking of you.  If I can be of help, feel free to PM me.

Atw1218

Thank you bcisnofun - I greatly appreciate you sharing your story.  My medical onc called me after getting my Oncotype score and said based upon it he didn't think chemo would provide significant benefit (still stating that there was the 1-2% reduction of risk if I did opt to do it).  That said, knowing my desire not to do it he would very much support starting tamoxifen now in lieu of the chemo.  After a LOT of soul searching and countless conversations with my husband we have decided that it the right course for me right now.  So we are starting that and focusing on keeping me as healthy and as strong as possible to fight off any problem cells.  Its both scary and liberating to finally have made that decision.