Onc. says I'm not as young as I think I am at 40...no chemo???

PLJ · July 2011

Hi,

I am sooo confused! I was misdiagnosed for over 1 year, told it was a benign fibroadenoma repeatedly when I called, questioned, hounded. Anyway, I obviously have trust issues. My tumour is 1 cm IDC with mucinous features (mixed, not pure), ER+ PR- Her2-, grade 2, SNB clear (0/1...only 1 node??? how accurate is that?), apparently no evidence of LVI. (A friend had no LVI on her path report but her nodes had cancer anyway. I believe it can work that way for vascular invasion, too.) Now, I am awaiting Oncotype Dx results, have been prescribed Tamoxifen in spite of the fact that I have a dairy allergy, wanted my ovaries shut down (am definitely perimenopausal, with symptoms and family history of early meno.) but this was not discussed at length by Onc., although it was said to be equivalent to chemo. (Hubby remembers this comment, not me.) I have seen 2 oncs. The new onc. said that she was on the fence about chemo. but because of my age (young) and grade 2 tumour, she might consider it. Other experienced onc. told me that I am not as young as I think I am. (Yup, that is what was said.) This onc. didn't think chemo but ordered Oncotype for me just to be sure. I know that ER+ PR- Her2- tumours can be more aggressive and possibly luminal B. What if I don't metabolize Tamoxifen or can't even take it because of my allergy? (I already asked about the CYP2D6 test for metabolization but nobody wants to do it.) I know that I'm not 25 any more but surely, the decades ahead of me need protecting. Advice please??? Thanks in advance! Have a great July 4th!

PLJ

CoolBreeze · July 2011

Actually, you have a "good" kind of cancer, if there is such a thing. (Which there isn't) It responds well to tamoxifen and while it is a moderate grade, it's treatable with estrogen inhibiters. Most people with the CYP2D6 problem are HER2+, is my understanding, and you are not.

I'd see what the oncotype shows and go from there.

It is not that unusual for an SNB to have only one node out. I often see two or three but I've seen a lot of ones.

It's kind of a crap shoot in a way - I had no lymphovascular invasion and no nodes, but I ended up Stage IV. I am HER2+ though, which is more aggressive, my cancer was grade three, my main invasive tumor was 3.5 cms with several other satellite tumors of IDC, and some had invaded the lobes. I also had almost five cms of DCIS, and of course, LCIS and ADH spread all through the breast, including the nipple. So, you shouldn't compare yourself to me.

Good luck, I hope it turns out you have a low oncotype and can skip chemo. If not, then just keep in mind that chemo isn't that bad and it's not like the movies.

And, whatever onc it is that said you aren't that young - he's flat out wrong. 40 is young for BC, I was 51 and my onc said I was young. Average age of women who get it is in sixties, and it gets more indolent as you age.

CoolBreeze · July 2011

You know, maybe we are misunderstanding the onc. There are woman who are perimenopausal but still putting out plenty of estrogen and maybe he's talking hormonal age, and not physical. Tamoxifen might shut it down pretty good.

I didn't know it had dairy in it.

Anonymous · July 2011

I'm with CoolBreeze. The stats you list are about as favorable as possible with breast cancer (and similar to mine with the exception of the mucinous factor, although it looks like that is also favorable). I've also never read about any dairy-related concerns with Tamoxifen.

The OncoType will be a test of your specific genes from your tumor and may give you a clear indication of whether you'll have to go through chemo, or it may a decision you will have to make as I did since my results fell into the intermediary category. But the fact that you can have an OncoType is positive in and of itself!

I'm assuming you've had a lumpectomy since the OncoType has been ordered? I hope for positive news from the test!

ICanDoThis · July 2011

Step away from the Web,ma'am. I would read the information section of this website, and maybe a little Komen, but it is easy to make yourself crazy, especially when it seems like the docs have gone out of their way to eliminate any possibility of your trusting them.

A couple of things - research is showing that the CYP2D6 isn't very useful, so most docs don't use it. Besides, if you are perimenopausal, there really isn't anything else you can take at the beginning, and tamox works really well for young women. There really isn't any research that definitely shows that shutting down ovarian function precludes the need for a hormonal treatment (although there are some ongoing trials for young women), although many women with aggressive cancers shut down ovarian function in addition to hormonal treatment. Many doctors are conservative -- there are significant side effects to messing with estrogen.

You are right to want to wait for the oncotype test, it is an excellent indicator of the potential responsiveness of your cancer to chemo.

I m sorry that this is so stressful for you. I also had problems that made me not trust my oncs, and it made treatment very hard for me. I ended up with a completely different team from what I started with, but it still was hard for me to believe them. Today I have come to realize that the treatment I recieved was completely appropriate, and I do trust that I am likely to have only had a passing encounter with breast cancer.

Hugs to you, and feel free to continue asking questions about what you are unclear about. One thing that the onc that I eventually ended up with gave me was the ASCO Guidelines for treating breast cancer, so that I could see that what was recommended for me was exactly the standard of care.

Sue

mdg · July 2011

I also asked about shutting down my ovaries (I am 45 and was showing no signs of menopause and my female relatives didn't have menopause until their 50's). My doc said there was no data supporting that it would be better for me to do that. She prescribed tamoxifen. I did do chemo and am Stage 1 with a grade 2 tumor. I also only had 1 SN taken out of each side and they were clear. My tumor did show angiolymphatic invasion though...that's why I did the chemo just in case. I stopped having periods with chemo but my body is still producing estrogen I am sure. I also was told I had a fibroadenoma and went back for a 6 month follow up and had BC. I switched NCI's after that experience and went to another NCI. I also am not trusting after that experience....hugs!

voraciousreader · July 2011

Once you get the results of the Oncotype DX test, if there is a disagreement as to chemo among the two doctors....then it's time to get a third opinion or have your case presented to a tumor board. Furthermore, if you are peri-menopausal, then what the doctor said about you not being as young as you think is correct. I was diagnosed at 53 and no where near menopause, so I was obviously on paper not as OLD as I thought I was. Kiss

Agree that the CYP2D6 test is controversial and it's use is debated. More importantly, I would try to nail down your menopausal status and begin your discussion from there for several reasons. First off, going forward the hormone therapy will be very important for you. There are clinical trials now that are trying to figure out the sequencing of using tamoxifen or an AI and for each, how long. My doctor told me that unless I get side effects, or there is more definitive studies, I will take the Tamoxifen for 5 years, followed by an AI for 5 years.

Secondly, the second ongoing study of importance is the SOFT trial which is comparing ovarian suppression to chemo. My Oncotype DX score was 15 and since I was much "younger" on paper, he thought I should do ovarian suppression. I spoke to two other medical oncologists and one agreed with him and the other, my niece who is a MO, thought it was too aggressive for my "favorable" diagnosis. I chose to do O/S using Lupron injections, unless I got side effects. All three doctors also thought I should do Zometa every six months for three years. I'm doing that as well. I am now over a year out and I feel fine. Actually, I'm feeling really, really fine and on paper too! All my blood work comes back great!

Finally, check out the NCCN 2011 breast cancer treatment guidelines.

Good luck to you and please keep us posted on your journey on the Mucinous BC thread as well. Thanks!

PLJ · July 2011

Hi everyone,

Thank you for your replies thus far. I appreciate and value your opinions.

The 'young' comment was made with direct reference to women in their 20s who get bc. *I* know that I am perimenopausal by my irregular cycle, cluster weeks of hot flashes, mood swings...gotta love it! Strong family history of menopause by age 42-43. My estrogen level has been checked in the past due to the hot flashes/skipping issues but was in normal range. (I wasn't symptomatic when the blood was checked.) I asked about checking my levels again but was told it was not necessary.

The Oncotype will take some time to come back and will put me over the 12 week window if I do need chemo...yet another anxiety factor. I sure hope it is a zero, as the onc. mentioned he has had some patients who have scored this.

I know these are good, specialized doctors and I am sure that they are following the guidelines *but*, my past experience has made me very anxious. Had I been appropriately diagnosed last year, I would have been grateful and relieved that the cancer was gone. (I even had a radiologist report that the lump got smaller when it had actually grown. The treating practitioner did not catch this error but another doctor did otherwise I'd still be walking around with cancer. So many other mistakes were made...ugh!) I guess it is really fear asking about chemo. I sit here, having been told it may not have been invasive last year, wondering 'if only' it had been removed then and I don't want to find myself sitting here in a few years, having progressed and wondering if I had only done the chemo, would that have made the difference? (70-80% women in my situation will be fine while the others will progress. Trouble is, they don't know who is who until the disease shows up elsewhere. My stats resources include literature written by well known oncs. like Dr. Susan Love and Dr. David McCready, among others.)

I have made a point of educating myself about my particular tumour. I know that ER+ PR- is not necessarily as responsive to Tamoxifen as ER+ PR+. I just wonder about this being used as the front line in my case, since it has been associated with Tamoxifen resistance. (They don't know if it is resistant until you progress.)

While I wish that my tumour had been *pure* mucinous, it was not. Thus, it is being treated like IDC but I hope that mucinous feature made it lazy!

Ok, so this is obviously fear driven and I need to sit tight until Oncotype comes back. I never was very good at waiting...

Thanks to everyone for your sage advice and support.

Hugs,

PLJ

voraciousreader · July 2011

On the contrary Clyn...usually Mucinous tumors are well circumscribed and easier to remove than other tumors. Also, because they are well circumscribed they are often mistaken for benign cysts...

judyfams · July 2011

Fareston acts like Tamoxifen in that it too is a SERM (selective estrogen receptor modulator), but uses different metabolic paths than the Tamoxifen.

It is used for women who cannot metabolize Tamoxifen, and is also known as Tamoxifen for post menopausal women. It does have similar, but less side effects than Tamoxifen.

I have been taking Fareston since March with no problems. I refused t0 take any AI because I did not want to take a chance that i would get the Se of severe joint and muscle pain. I am very happy with my decision.

Judy

Onc. says I'm not as young as I think I am at 40...no chemo???

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