chemotherapy with ILC

everetta · May 2019

I have had many different opinions from different doctors on the benefit of chemo depending on onctotype scores that I wondered what you think your doctors would have recommended, knowing how they evaluate things. I am 68, 1cm ILC, node negative, grade 2, mitotic rate 1, oncotype of 29. Any advice. I have been told benefit anywhere from 1-4% depending on who I talk with. Some say less then 1% benefit.

Meow13 · May 2019

everetta, you probably have already seen my case I had 1cm Ilc and one idc separate occurrences each 1cm.

Same as you grade 2, mitotic score of 1, oncodx of 34. I chose no chemo I am on year 8 no cancer. I did 4 years on AI drugs.

Cancer math tools says less than 1% benefit from chemo and AI treatments. I think surgery probably got everything.

jessie123 · May 2019

That is such a horrible decision to have to make. My oncotype score indicates that I will only benefit 2 to 3 percent with the Al's so I'm also trying to make the decision whether to even bother with them. Maybe we can call the onco people ourselves to get more information. I don't think the doctors know that much. I'll try to find the number and give it to you if I'm successful.

everetta · May 2019

HI Jessie,

Did your doctor think that the onctoype score would tell you if the Ai's were beneficial. I hadn't heard that before, but that being ER and PR positive is how you would know if it was beneficial. What was your oncotype score? I think oncotype is to show the risk of recurrence and the benefit of chemo not Ai;s. I have had such an easy time on my Ai's and my doctor felt it cut my risk in half so that was an easy decision for me. And as long as you are on it, it protects (although not 100%) a chance of recurrence. If I had difficulty tolerating the Ais I might have felt different but since I have adjusted well, I will take any reduction it will give. Chemo is a more difficult decision since there is more toxicity as I see it.

Meow13 · May 2019

everetta, I think Tamoxifen is considered just as effective for er+ pr+ cases but AI drugs are almost 2x as effective for er+ pr- cases. I haven't seen data specifically on ilc tamoxifen vs AI, have you?

jessie123 · May 2019

Everetta -- My recurrence score is 19 my distant recurrence risk at 9 years with the Al's or Tam alone is 6% and my absolute chemotherapy benefit is <1%. Since the Al's are supposed to reduce my distant reoccurrence rate by 30% then adding 2% to my score of 6% is an 8% chance of distant reoccurrence without taking the Al's. I already have osteoporosis in my hip - so if I take the Al's I'll for sure have to take the osteoporosis drugs for as long as I'm on the Al's. This is the Oncotype site -- they even have a phone number - https://www.oncotypeiq.com/en-US/about/about-oncotype-iq

everetta · May 2019

My recurrence score was much higher (29) so the question was chemo not Ais (also I don't have any osteoporosis so no problem getting ais). My doctor has also given me every 6 months infusions of zometa which is good for bone loss from the is but he is giving it because it reduces the chances of bone mets..but your risk there is much lower then mine. Your risk is so low, mine is higher. But you might ask about zometa if you take the Ais. I have personally had no bad reaction so far (2 months) to the Ais and just had the first infusion of zometa yesterday and have done fine (a little achy this morning, but nothing too bad, a common reaction for the first 24 hours). These decisions are so hard to weigh the benefits and risks. Good luck and glad you had such a good onctotype score. I don't know your age, the oncotype score is read differently in terms of recommendations depending on your age.

Stephy01 · May 2019

I tried it once and felt really nice and was helpful for my bodypain.

momand2kids · May 2019

Evertta

Not sure how helpful this weill be but I had an onc score of about 26 I think-- so at the time, gray area-- I was in my 40's -- so I went ahead with 4treatements of A/C and radiation. Because I coudl not take tamoxifen due to a blood clot when I was pregnant, I had to take an AI-but that meant they had to put me in menopause-- so I did lupron shots for the first 3 years of the 5 years of the AI. I expect lupron works differently on everyone-- on me it was hard-- vaginal dryness, I think I was a little more moody (but no hot flashes!). I think the combination of the AI (letrozole) and lupron was a challenge-but I did it- then went off at the 3 year mark when I figured I would probably me in meno anyway. I was right. Felt better-- still have some of those issues (dryness) but overall ok.

Related to working while on chemo. At the time, I was working full-time plus (now I just work full-time!!!) in an exec position. I was able to work through most of it--I found I had to take a day or two off each cycle (4 x). I was treated on Fridays and usually Mondays and Tuesdays were days I worked from home-I wasn't sick (they give you great anti nauseau drugs) but I felt a little queasy and tired. Then by Wednesday I was back in it-and felt better and better until the next week (my treatements were every other week). So it took 8 weeks, then I was done.

I got a human hair wig because I did not want to discuss it at work every day--I work with hundreds of people and I realized that if I told them all, I would spend all my days at work talking about cancer. It was great to go to work, get to work and not think about cancer... made a HUGE difference. Assuming you don't have any negative side effects, that should be possible--my onc told me to plan to work. We kept the kids's schedules normal- nothing changed for them and in retrospect, that was a good decision. Radiation was much easier, did it on my way to work every morning.

I don't know how to advise you about the lupron and depression-you may want to pursue that further with the onc.

My hair grew back thicker than before and fairly quickly-- I started chemo in late January , shaved my head and bought the wig-- and by July was no longer wearing the wig and had a very short haircut. Felt great!!!

Hope this is helpful-happy to answer any questions as you try to make this very hard decision--- I think it is a little harder when the oncs are not specific-but it is good that you have two of the same opinion--that pretty much tells you that you get to make the decision. I once heard someone say "when you have to make a big decision, get up one morning and decide yes I am going to do this" then live with that all day. The next day, get up and say, no I am not going to do this, and live with that all day" . On the third day, it may be more clear. I like this--I sometimes use this for big and small decisions---

Best of luck to you

jessie123 · May 2019

Everetta --- I'm only a year older than you and our tumors are usually not as aggressive. Your diagnosis is milder than mine. Did you get the K-67 (or whatever number it is - forgot) score that tells you how aggressive your tumor is? I've read chemo works better on aggressive tumors. I wonder if it would be a good idea to have the tests run again - maybe they messed up on yours. It's always possible. I really would want to call and talk to them about the result -- maybe they can relook at your slide. What did your oncotype distant recurrence risk at 9 years with the Al's show? Was it also high? Thanks for telling me about zometa - I'll look into it.

everetta · May 2019

My original oncotype ws 31 and redone and was 27. I am Er positive but Pr negative which is a reason for the score to be higher. Usually Lobulars are low or intermediate oncotype. The Pr- makes it higher risk but my mitotic rate (my person does not do K167 because they don't feel they are accurate but they do look at mitotic rate and mine was 1 so slow growing.

chemotherapy with ILC

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