Oncotype 19 and chemo

Joe4dis

Somehow I keep falling right in the grey zone with everything. Going into surgery they were sure my nodes were clear but surgical pathology showed one node macro and one micro. Only two were taken since they didn't think they were involved. My OncoDx came back as 19. The oncologist said it was up to me whether or not to get chemo. Recurrence rate is 12% either way but the study in node positive patients is small. The surgeon says ok w/o chemo. Still to meet with radiation oncologist but near sure that radiation will be recommended. Thoughts

carmstr835

My onco score was 17 for left and 19 for right breast. My oncologist said no chemo, but I wasn't so sure. My surgeon told me the intermediate scores were not valid and had just come from a symposium regarding oncotypes. My oncologist sent the pathology in for a mammaprint. It also came back low, but my issue was the biopsy. It was so different than the surgical pathology and I had a tumor grow to 2.6 cm in less than 9 days. The lymph node was extranodal, I was bilateral, and her2+ in the biopsy but her2- in the surgical path. I decided I wanted to do everything I can to beat this cancer. So after a 2nd opinion suggested I do chemo, my oncologist relented and agreed to TC, 4 cycles. Then the 2nd opinion oncologist redid the pathology on the biopsy to clarify the the inconsistencies and it was definitely Her2+ no doubt so my chemo was changed to 6 cycles, and added Herceptin and perjeta, the cytotoxin was switched to carboplatin.

I would suggest a second opinion to help you decide. That's what I did and I believe it was in my best interest.

Joe4dis

Thanks for sharing. I think I will try for a second opinion. I am sorry you had to go through additional stress with conflicting pathology reports. In my case they were assuming no node involvement based on my sonogram and physcal. I'm glad you sought out the second opinion and they were able to reassess your treatment.

DawnP64

joe4dis our situations are nearly identical. My oncotype was also a 19 and we did not expect to have a positive lymph node, but one of the 3 removed was positive. My first oncologist also put the chemo decision in my lap. I went for a second opinion and switched my care to that oncologist. He felt that not going through chemo was too big of a risk due to the lymph node involvement. My surgeon also told me I had come too far not to go the extra mile and go through chemo. I'm doing 4 rounds of TC, 2 down & 2 to go. Both oncologists told me that I might be cured already if everything was caught with the surgeries. They both also said that if we didn't get it all this was our only chance to kill it (with chemo). If it metastasized, we could only control it. I wrestled a lot with my decision. I think getting a second opinion is a great idea. Best of luck to you!

Joe4dis

Thanks DawnP64. I'll definitely take what you were told into account. Are they also recommending radiation for you? I haven't met with the radiation oncologist yet but both the surgeon and mo say I need it. My surgeon is actually fine with no chemo. If you don't mind me asking, how is the going. The mo said that would likely be my regime if I opt for chemo. Best wishes with your treatment.

DawnP64

I will have 4 weeks of radiation (5 days/week) and then be on tamoxifen initially and then move to another hormone drug once it's confirmed that I'm in menopause. As for the chemo, the first round was difficult for me but the 2nd round has been much better. I learned several things that have helped. I think the most helpful was taking claritin for several days after the Neulasta shot. I initially only took it the day of. Also, I think that first round was a real shock to my body and I had acclimated better by the 2nd round. The first round was like having the flu, sick to my stomach, body aches. The Neulasta causes bone pain (Claritin for this) and my oncologist said the Taxotere also causes general body aches. The pain that I was having freaked me out because I felt like my body was breaking down on me. Then, I got to the third week & I felt pretty close to normal. I think knowing that I get a "normal" week has helped me in this second round. Good luck to you! I know what an agonizing decision it is. I went back & forth on what I would do for a couple of weeks.

vlnrph

For Dawn, has anyone suggested genetic counseling due to your pre-menopausal diagnosis? Even without family history (or if you are already over 50), it may be worth thinking about prior to having radiation. Should there be an inherited mutation, submitting 'normal' cells to additional stress might make it harder for them to perform effective DNA repair, possibly setting the stage for future abnormal growth.

Joe, not sure what your age is but wanted to say hi to a fellow pharmacist! I found TCx4 to be doable although I did not attempt to work during that summer. I went back for 18 months then retired...

Jackster51

I did not do well with TC. I did not get my hair back, 5 years on now.... and I have crippling neuropathy in my feet, also 5 years on.... If you are on the fence of needing it, TC is some pretty wicked stuff. Might consider CMF or something a bit milder..

Joe4dis

thanks for everyone's input. Unfortunately I would have to work full time plus. Not an option regardless of how bad I felt. It's the possibility of lasting damage I'm most concerned with. I'm s runner and very active. Qol would be non-existent if I couldn't do those things.

Meow13

Joe4dis, my oncodx was 34. I had 2 tumors each 1cm one ilc and one idc no nodes. I chose no chemo and am 6 years NED. The thing about oncodx scores are they are only an indication. Now I took 4 years AI drugs not tamoxifen so my risk is calculated with tamoxifen. A low score does not ensure you are safe from recurrence just as a high score does not mean inevitable recurrence if you don't do chemo. So much is unknown and being a mathematician I don't hold much faith in the oncodx test and statistics.

Nancy2581

Joe4dis our situation seems very similar. I wasn't really given a choice. My onc said chemo. I never even got the onco test which I'm still a bit peeved about. I will say that my onc said I breezed through chemo. It wasn't a walk in the park, but wasn't as bad as I had anticipated. As much as I didn't want to do it I'm glad I did. Some will say chemo doesn't work for our low grade cancers. If it truly didn't work for all grade 1 cancers it would not be offered. My two cents anyway.

Nancy

Oh but I did have LVI which also played into me getting chemo

Joe4dis

1. Thanks Nsncy2581. So frustrating that there is no consensus on when to do chemo or not. Your point about grade 1 is well taken.

Reesey

Joe4dis, your situation is almost identical to mine. My Oncotype score was also 19. My surgery was 3 weeks ago and nodes were expected to be negative. However, I had one node with a 5mm macro met and one with isolated tumor cells. ALND revealed no other positive nodes. No LVI was seen on biopsy but was described only as "present" on surgical pathology report. After my case was presented to the tumor board, it was recommended that I have radiation to the axilla and chest wall. I am awaiting results from my Mammoprint test which was ordered earlier this week. My surgeon told me that the Mammoprint gives them more information than the Oncotype for node positive disease. She says that if the Mammoprint result is high risk that chemo will definitely be recommended. I will have my first appointment with my MO on 8/14. I'm torn between wanting to avoid chemo if I can but also want to do all that needs be done to minimize chance of recurrence or metastasis. It's so hard to know what is the right decision!

Joe4dis

Yes very similar scenario. I constantly go back and forth. I meet the radiation oncologist in the 14th. I decided against a second opinion because after searching around in this situation it seems 50/50 on how the oncologists choose to go, They are in the process of trying to get the mammoprint done. I'll likely base my decision on that. I also am going next week for scans. No point in doing all this if it's already somewhere else. The one unknown is if other nodes affected. Macro node 2.1mm (0.1 over) and in micro. They only took 2 nodes.

DawnP64

Vnlrph: Thanks for the suggestion on the genetic testing. We did talk about this with my oncologist, but it hasn't been scheduled yet. I will follow up with him.

barbara510

Hi. My score was 25 and decided to do chemo. Started Aug.1st. Sucks being in the grey area having to make these important decisions yourself. This is already a reoccurrence for me (DCIS 2010 treated with dmx and immediate recon, implants removed '15) so very scared of it coming back... again. Odds were supposed to be low of reoccurrence getting a dmx for DCIS, but here I am. Stage IIa. Went through 2 surgeries. Had 1 out of 14 nodes positive. I am doin CMF chemo which isn't the first chemo regimen my oncologist recommend. That was TC-which had some potential permanent side effects that scared me- but my Doc told me with my Ox score he felt comfortable with me doing the CMF. It hasn't been too bad and doc says I might not even loose my hair. I'll have it 5 more times every three weeks. Then I'll do radiation and tamoxifen. I hope doing this will keep it from coming back, but you never know. Good luck with you decision. Very hard. I went back and forth a lot.

Joe4dis

barbara510. I'm sorry you having to deal with a recurrence. Despite all the high tech tests and multiple doctors I'm learning it's really a crap shoot. With your original diagnosis it should've been good. I've seen people stage 3 many years out. I'm glad you u areable to cmf.

MamaFelice

I know each case is different, and decisions are very individual. I am just amazed at how the docs are giving me so many different options and leaving the final decision making to me. Had lumpectomy and margins clear-- so mastectomy optional. I had MammaPrint and it came back on Monday with high risk so now back to chemo. I have micro mets in 2/3 sentinel nodes.....doc wants me to have ALND. Don't understand why if having chemo-- won't chemo get any remaining cells IF they even exist?

Also, I cannot receive rads because I received my max load to the chest 24 years ago when I was treated for Hodgkin lymphoma. This BC is a direct result of rads to breast. My case is all a bit murky and decision making is very difficult. I want to be aggressive but I do not want to do extra surgery and treatments out of fear. I would love to find other HL survivors that dealt with post rad BC.

Thank you all for being so supportive during these tumultuous times

vlnrph

Wow, Mamafelice, that's quite a history! My surgeon insisted on complete axillary node dissection six years ago although today it's possible she might be more agreeable to skip it due to more recent clinical study data. Perhaps your facility has an expert tumor board which could review your case. If you search the forum here for others treated for Hodgkin's in the past and don't find many, start your own thread. [Edit: great minds think alike - I see you began a new thread yesterday. You could also try sending private messages to those who posted previously on the topic because they might not visit this website regularly]

In Dawn's situation, a session with a genetic counselor is probably the best first step. That person can help decide which test to order and be an ongoing support should a mutation be found. Most physicians will not have the time/depth of training to interpret and keep up to date with the developments in that field now taking place.

Joe, isn't it amazing how 'unscientific' all this seems? My pharmacy school education (OK, it was decades ago) led me to believe that medicine was an exact discipline, with definite answers for any presentation...