Any early stage women didn't take chemo?

hlya · July 2009

Hi, Eileen,

I didn't get the 2nd opinion from another ONC, but my surgeon didn't support chemo either, she has some arguement with my ONC in some other areas - eg. mastectomy, overies removal..etc... but at this point - chemo - both of them support not to take chemo.

What do you think about overies suppression and AL? why AL not Tamoxifen? My concern now is how Tamoxifen works for me

LoriL · July 2009

Hi Lucky,

Great news about your Oncotype score! What size was your tumor, by the way? I might be missing it, but I don't see it anywhere. Anyway, I just finished my 5th radiation treatment today. So far, so good. My skin has just a very faint pink tinge to it, but I'm being diligent with putting Aloe Vera gel on it. Good luck with everything!

Rabbit_fan · July 2009

Hi Lucky - I don't know what to think about the hormonal treatment. Some days I obsess about it and some days I try not to think about it so much. What keeps nagging at me is that I have read posts and studies that seem to hint at Tamoxifen not working as well for ILC. I think I've read that removal of estrogen may work better than blocking the receptors for ILC. I'm pre-menopausal, so I would either have to do ovarian suppression or remove the ovaries to use aromatase inhibitors instead of Tamoxifen.

I saw someone else had posted in another area that she had a low Oncotype score, but had a high Ki-67 level. She said that even with the low Oncotype, the Ki-67 "haunts" her, and I kind of feel the same way. It took 3 weeks to get my Oncotype, and while I was waiting I was reading a lot about the subtype classifciations of Luminal A, Luminal B, etc. My Oncotype was 11, but my Ki-67 was 20%, which according to some research puts me in the Luminal B category which has a much less favorable prognosis than Luminal A. So I guess I just keep worrying that the Tamoxifen isn't going to work, and that I might have a better chance with removing the estrogen, but those AI's also sound pretty bad as far as joint aches and vaginal dryness. I guess I'm still looking for that combo of test results and treatment decisions that will say to me "This is the right thing to do and you're going to be OK."

And LoriL - I posted this in the July rads also, but I'll just say it again here - I think you were the one who was waiting for a biopsy on a lymph node and I just wanted to tell you I'm thinking about you and hoping you get good news.

hlya · July 2009

Hi, Loribaby,

Wow, you fininshed 5th radiation already without much SEs? I pretty much envy you. I am not physically a strong person , the nurse told me the radiation could cause nausea and tiredness and I am quite nervous about it now. I will see my ONC next week also the nurse will schedule the radiation for me next week. My tumor is more than 1cm, but smaller than 1.5cm, I asked about the invasive area but nobody could give me an answer so far......I don't understand why? when I was dx first time by U/S before the surgery, the doctor told me the area is big, so I reallly want to know how big the area is...but no answer so far. hmmmm

hlya · July 2009

Hi, Eileen,

Thank you so much for your response! I heard the same thing as well about Tamoxifen resistance.
Did you ever hear of CYP2D6 test? It tests whether you are low medium or high Tam metabolizer. Did you ever ask your ONC about it? I will talk to her next week. I asked her about it but she said that was too early to talk about it before my oncotype score came back.

If your period was stopped by Tam and your got obvious menupause SEs - hot flashes, sleeping problem, bad temper ...etc...these should indicate that Tam works for you.

Also, I would like to know your ER/PR %.

I am also interested in what your grading comes from: nuclear, mitosis, etc. if you know. But it's not that important. I am more interested in your ER/PR %.

Thanks!

Dollyd · July 2009

Dear LuckyA,

I has mastocomany and node involvment and ER +. I discovered I was pregnant 2 days before chemo was due to start and decided not to have chemo. I was 32 at that time. After baby was born I went on Tamox for a while but found the side effects to much and stopped. However after 12years (2002) I had a recurrance in the plerua and I have been on armidex since then, still no chemo. In 2002 oncoligist said it I have more treatment options now because I never had chemo.

Say a wee prayer to help you make the right decision.

Best wishes

Dollyd

Dollyd · July 2009

Lucky,

Forgot to say. I had overies removed in 2002 and now on armidex. Afew side effects but not too bad.

Dollyd

TXBadboob · July 2009

Hi again Lucky! Sorry I just read back on this. Yes, thin women have a higher risk of osteopenia and osteoporosis. I had my ovaries removed because I tested positive for the BRCA2 gene, which carries a risk for ovarian cancer. I'm so glad for you for not having to do chemo, and I hope your treatments go well.

Deen

hlya · July 2009

Hi, Angel10,

Did you Oncotype score come back?

hlya · July 2009

Hi, Dolly,

Why didn't you take chemo even in 2002? What did your doctor say?

Dean,

Did you take bone density test? It will show whether you got osteoporosis.

Also why did you ask for BRCA gene test? Do you have any family history?

dianaon · July 2009

I was dx'd 10/08 at age 52 with stage 2a ILC.ER/PR +, HER2 neg, 2.6 cm at largest, neg SNB's (2), neg vessels, and lymphs. The Onc immediately STRONGLY rec. ACT, based on adjuvant on line. I asked her what the stats were in ILC with that Tx vs. IDC...she said no difference, which is unknown...When I demanded an Oncotype test, she the offerred me the Tailor trial- said 25% have such a low # they only get Tam, the middle 55% are randomized to Tam only or CMF followed by Tam, the highest 20% get ACT,Tam.

So, one minute it was- you're a fool not to take the ACT or at least CMF, and the next minute, it's only 20% I'd be given ACT... I scored 18 (the low end of the middle group) and decided on Tam only, thank you very much. (and got another Onc).

The small % possible decrease in mets at 10 yrs was not worth it to me. Kep in mind that ILC studies are few, mostly they are all grouped together with the 90% dx'd with IDC. So nobody really knows. And our tests (Oncotype and others) have far outpaced any research on Tx.

hlya · July 2009

Hi, Diana,

Ya, that comes one of the question in my mind: Why does BC happen in Ductal much more than Lubolar? What's the difference between these 2 environments to BC cells? ILC does have better biological nature - most are ER/PR+ HER2 - and grade 1 or 2. If somebody studies the difference between them who knows whether it would improve the BC research.

Anyway, as far as what I know, when you join the trial, you will be randomly assigned to the treatment if your score sits in gray area - 11 - 25, as your score is 18, did they allow you to choose the treatment plan by yourself? I was told I can't decide by myself (even my doctor doesn't have the right).

Dollyd · July 2009

Hi Lucky,

It was my decision not to have chemo, we had longed to have children for 5 years and when I found out I was pregnant I would not risk anything happening to the baby. 19 years ago chemo was quite toxic. My onc was not happy with my decision but my family doctor supported me. My only child (daughter) is 18 now and the joy she brings to our lives out weighs the daily pain and aniexity of cancer .

May God guide you to make good decisions.

Best Wishes

Dollyd

Dollyd · July 2009

Hi Lucky,

I rambled on I didn't answer you question. In 2002 my onc (different one) told me I have more treatment options because I didn't have chemo. Chemo is his last resort. I'll stay on armidex as long as it controls the cancer when it stops working onc will change to something else and on & on it will go hopefully for many years. With secondary cancer it objective is to prolong life.

Regards

Dollyd

hlya · July 2009

Hi, Dolly,

Did you get local recurrance in 2002 or mets to somewhere else? Did your doctor tell you what your grade was? I got PM from another lady that she did a research by looking through lots of stage IV posts on this site, and found even at stage IV, women didn't take chemo live much longer than women who took chemo. Sorry I didn't do anything like that, just got a PM from another lady and you might be one of the women she mentioned.

I thought if chemo was nessecery , I had to take it. But I am also scared by the SEs as I am not a strong person.

Dollyd · July 2009

Hi Lucky,

2002 mets in pleura (lining of lung). Apart from knowing it's Er+ I have no other information.

Beat wishes

Dollyd

JannaC · July 2009

I am confused. What is this grading number 6, 7, etc? I only know that my LCI was Stage I, grade two, Oncotype 19. am ER/PR+, HER2- (score of 9.1). Thanks. Janna

LoriL · July 2009

The Nottingham Score looks at 3 different characteristics of the cancer cells and grades them on a 1-3 scale. The total of those 3 scores are then added up. A total of 3,4 or 5 equals an overall "Grade 1." A "Grade 2" is a Nottingham Score of 6 or 7, and a "Grade 3" is a score of 8 or 9. The higher the grade, the more aggressive the cancer cells are. However, I have read in several places that with ILC the grade doesn't seem to necessarily have any better/worse longterm outcome. In other words, it's not as worrisome for a ILC gal to have a Grade 3 as it is for a IDC gal. Hope that helps!

hlya · July 2009

Hi, Janna,

What is your score 9.1 for? Could you or anybody else explain a little bit?

Loribaby:

My surgeon said regarding the grade, mitosis is the most important feature, it shows how aggressive the BC cells are. ILC seem to be all low mitosis if you check other women's grading here. I asked her why my nuclear was 2 on the 1st pathology report then became 3 on the 2nd report, she asked me to forget about it. So seems the current grading system doesn't really work for ILC.

I just finished my scan today, I am a little bit nervous about my treatment as I worry about the fatigue SE, 'cause I have to take public transit everyday (actually 3 buses) to get to the place. The radiologist scheduled 28 x RAD for me instead of 16. He said if I need reconstruction in the near future - this year or next, 28 with less dose would be better than 16.

JannaC · July 2009

Loribaby,

I don't think I mentioned a 9.1. I don't know what that is, it must be someone else. I am 57 and I had an oncotype score of 19, that wonderful grey area. Maybe because of my age, I don't know, but she recommended against chemo, so I just did 25 rads and am now on Femara with no side affects other than an occasional hot flash (I take it at night). But I'm only in my third month of Femara, so we'll see. My oncogogist said that my chances of recurrence of the whole body by taking Femara and radiation, is somewhere between 9%-15%, which is an average of 12%. It doesn't sound great, but I just went by what was recommended. Heck, I think the rest of the population is not much better than that.:)

JannaC · July 2009

LuckyA, I'm sorry, I think my last post was supposed to be to you instead of Loribaby. But hey, we're all reading this so I think it's OK.

Ramona · July 2009

I have made my decision to only take the hormonal therapy. My oncotype score was 18 just 1 number over the low. If i took the chemo it will only lower the recuring score from 12 to 8, Just 4%

so after taking with my Children and a few friends I will be telling my Doctor on Tuesday. No to Chemo. I will be 61 if a few weeks. Its a hard decision. Mona

hlya · July 2009

Hi, Janna,

Actually my recurrence rate is the same as you. My ONC said if I didn't take any treatment, my rate would be 18%, and on Tamoxifen it would be reduced to 11-12%. And that's all. Did you start radiation? I worry about the fatigue side effect...it's summer break and I need to take care of my kids. and 28 x rads sounds such a long time!

Hi, Ramona,

I feel you! My ONC said the same thing, she said chemo will only benefit 3-4% to me. I am not a strong person and I want to be more strong to beat the disease. So you doctor left it to you to make the final decision?

JannaC · July 2009

Lucky, I handled the radiation just fine. I know it can make you tired, just take a nap. There were only two days that I felt really tired. By the 9th treatment I came home and slept for 4 hours straight. The next day I came home and slept for two hours. But other than that, I felt pretty good. The last week was hard on the under arm area where it never gets sun. I used aloe vera every day 2x a day and the last week I used Aquaphor, I think it''s made by Eucerin. It's salve that helped a lot. My radiologist gave me s few tiny samples and that was enough. I got into riding my bicycle for exercise and I think that helped. BTW, I had a lumpectomy and breast reduction at the same time. Unfortunately, my surgeon didn't get a clean margin and had to rex and then got a clear one. My new baseline mamo comes up the end of August. I'm alread getting nervous about that. Anyway, don't wory about radiation. You will do fine.:)

JannaC · July 2009

LoriL, Can I ask why you had a bilateral mast? My diag was the same as yours and I had a lumpectomy + radiation + Femara. My oncologist felt a mastectomy was overkill. Did you have other circumstances?

LoriL · July 2009

JannaC- My cancer did not show up on mammogram OR MRI- I found it myself. So, when I asked how they would follow me for recurrence, and they said "mammogram or MRI every 6 months," it just didn't sit well with me. If my known cancer didn't show up on those 2 tests, how could I truly know that everything was OK? And, how could I know that the other side was OK, too, given the fact that ILC tends to occur bilaterally? My Oncologists would have been fine with a lumpectomy, but my surgeon completely supported me. I'm very glad I did it. I know that I could still have a recurrence with bilat mast, but the incidence is much lower.

hlya · July 2009

Hi Janna,

My situation is the same as LoriL except my tumor is 1.1cm. My surgeon supported me to remove the bad breast at least but she also fully supported me to get bilateral masts. But my ONC thought it's way too aggressive.

Besides the tumor, there was 1 x atypia in the bad breast and 2 x atypia in the good breast, after the surgery the 1 atypia was confirmed as LCIS and the 2 in the good breast were nothing or B9.

My friend told me - if the surgeon fully supported you to get mastectomy, it was probably 'cause she/he might not want to involve in any complication which would ruin their credit - as ILC tends to be multi-focal, hard to be detected by mammogram, and could spread to another breast ?( but I still doubt this saying),

It actually depends on whether you are a worrier - I am. I worry about the scan every 6 months, I worry about whether I could get a real clean margin, and bi-lateral masts. makes me feel a little bit better. It really depends on individual's, but I can fully understand why lots of women try best to save the breasts. My husband fully supported me to remove them and he doesn't support me to get reconstructed as it will cause more pain , but I told him I will still consider to reconstruct as I don't do it for anybody else, I just do it for myself. It makes me feel I am a woman. You have to balance which is more important to you in your life. It's a hard decision though.

Also, don't worry about the coming mammogram, you just finished your surgery, things shouldn't change that fast. We might need to worry about it after few years. At least your breast area can be checked by machines, I will only rely on my fingers!

JannaC · July 2009

LuckyA - I'm not quite with it. I did mention a 9.1 score. That was the HER2 negetave score from my oncotype DX. The HER2 positive cut-off is 11.5 units, equivocal range from 10.7 to 11.4 units. I'm just reading from the test. I hope that clears things up. I also have LCIS in both breasts and hyperplasia but my oncologist said the Femara should calm everything down and we will watch closely. I took her advise, but am like you, waiting for the other shoe to drop isn't fun. I've only seen her twice since my surgery, and now I'm on a 3 month visit for blood tests. I am always full of questions, so I think I'll ask her what having a dbl mast would do for my chances, just for the heck of it. I already went from a DD to a small B in both breasts from the reduction I had during my first surgery.

hlya · July 2009

Hi, Janna,

I asked your HER2 9.1 score 'cause my HER2 on pathology reports shows HER2 (1+), now Oncotype re-tested it which made me feel more comfortable.

Ya, if you keep your breast you can check whether the treatments work for you. There are always pros and cons and there is no treatment which is 100% perfect and guaranteed.

Any early stage women didn't take chemo?

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