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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: Trying to decide on treatment, Help

Topic: Trying to decide on treatment, Help

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: May 26, 2010 11:43PM

trying2Bpositiv wrote:

Just met with the onco yesterday and was given a menu to pick from to decide my fate.  I was told if I did nothing but the surgery I had a recurrence rate of 24, if i just did chemo my recurrence would be 13, if I just did hormones therapy (tamafloxin) the recurrence would be 12, and my last choice would be a combo of chemo and tamofloxin would be 6.  I asked the onco how my oncotyping dx of 14 played in this.  Well she didn't know I had one done and them totally dismissed the results saying the results were only for postmenopausal women. I am stage 1, grade 2, 1.8 cm, clear margins, clear nodes, estr/proges pos, and her2 neg.  My breast surgeon thought I would only be on hormonal therapy but said she would be interested in what the onco suggested (probably knowing they would offer chemo and radiation).  I just don't know if taking chemo is worth going from 12 to 6 recurrence when the onco score is 14.  Soooo confused!!!  The oncologist is saying I need to make a decision cause she needs to start the treatment within 6 weeks of the surgery.  She made it seem like there is a window period and once the window closes the chemo is not going to work.   Now I feel I won"t beable to to get a second opinion.  Any suggestions ?

Dx 4/1/2010, ILC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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May 27, 2010 02:00AM dlb823 wrote:

Absolutely get a second opinion.  It shouldn't take that long to line one up given the fact that you have a confirmed dx and are ready to decide on treatment.

I'm guessing what the onc you saw may have meant about the OncotypeDX test only being accurate for postmenopausal women, is that she is more comfortable offering more aggressive treatment to younger, premenopausal women, no matter what their score.  But if that is what she meant, she obviously didn't communicate that very well to you.  I'm also not impressed with the fact that she didn't have your OncotypeDX results in your file nor had she reviewed them prior to your app't.  Do you know if it was sent to her?

You need to find an onc who can explain the benefits of your various treatment options better. You might also want to check a thread here called the New OncotypeDX Rollcall.  It will give you a feel for how others in your situation decided whether the benefits of chemo outweighed the risks.  Deanna 

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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May 27, 2010 10:52AM Kleenex wrote:

What an unpleasant menu! I always hate that sort of terminology used by the oncologists - we can be "offered" chemo, as though it's something yummy on a silver platter brandished by a studly tuxedoed waiter... No thank you, I don't care for any at the moment.

I agree with Deanna. You may need to talk to another oncologist - you'll be seeing this person for at least five years, and you'll REALLY be spending a lot of time with her/him if you opt to have chemo.

Not sure of your age - my Oncotype DX score was 11, and you can see my tumor stats below. I was 45 at diagnosis. Chemo wasn't even put on the table for me - the thought was that the potential harm from side effects was greater than any benefit of the drugs.

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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May 27, 2010 02:54PM trying2Bpositiv wrote:

I am 53 premenopausal.  I am now making a 2nd and maybe a 3rd consultation.  The oncotyping results were sent.  I think she just focused on the information needed to fill out my menu from Adjunct online>  I am trying to get an appointment for another consultation at UCSF breast center>

Kleenex, My oncotype Dx score is 14.  Your tumor size very close to mine mine being 1.8c.  My grade is a 2.  What made your oncologist decide not to offer chemo? onco score???? 

I read on line that a combination of Tamoxifen and Zometa in premenopausal women gave a decrease of recurrence by 36% and causes recurrence risk down to chemo level with lesser side effects.  I am hoping to talk to the other oncologist about this treatment.   

Dx 4/1/2010, ILC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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May 27, 2010 10:26PM JennyB wrote:

trying2Bpositiv, your stats are very, very similar to mine. ILC, Oncotype 13, premenopausal (I'm 39), no nodes, grade 2, 1.4 cm tumor, ER+/PR+/HER-

The option of chemo was given to me (by two different oncologists at UCLA), but it was a very, very close call, and a difficult decision to make.  I decided to do it for that small reduction in recurrence probability, with the agreement that I'll stop if I get neuropathy or anything that suggests other long-term effects.

 I'm halfway through chemo now, and I'm not having any terrible side-effects, but it's certainly not fun. At all.

When I'm done, I'll be doing radiation, then probably Tamoxifen + Zometa, though it seems few early-stage people here are doing Zometa (and I'm a little nervous about it, but one step at a time...).


Dx 3/18/2010, ILC, Left, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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May 28, 2010 04:08PM trying2Bpositiv wrote:

Jenny,  When you had your meetings with the oncologists did they go over the possible recurrence rate with the different treatments?  How long after your surgery did you start chemo?  

The thing that I am struggling with is the treatment with only Tamoxifen (oncotyping results would be 9), and treatment with chemo and Tamoxifen (using adjunct online) would be 6.  Would it be worth the 3 % to undergo all that chemo?    

Dx 4/1/2010, ILC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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May 28, 2010 09:49PM JennyB wrote:

I know, that's the tough question, isn't it? Is the 3% worth it? The answer is going to be different for different people.

They did go over the possible recurrence rates for different treatments, and we weighed them against potential nasty side effects of chemo. It did turn out to be about a 3% difference for me, too, when it came to 10-year recurrence risk.

I started chemo six weeks after my surgery.

Dx 3/18/2010, ILC, Left, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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May 29, 2010 04:09PM Kleenex wrote:

How old are you? Perhaps you're younger than I was, as the only other "main" difference would be that your tumor was considered grade 2, whereas mine was allegedly grade 1... The first oncologist I saw, prior to having the surgery and switching to an onco affiliated with the "breast center" where the breast surgeon I chose was based, had a different plan entirely. He didn't even mention the Oncotype DX test, and in his world the only things that mattered were tumor size and nodes involved. We'd discussed that if it was over 2 cm (the MRI suggested it was, and the ultrasound suggested much smaller), I would definitely end up with chemo. Not only that, but afterward he wanted to do both Tamoxifen AND Lupron shots to knock out my ovaries.

The other oncologist I met with after the surgery. It was primarily the Oncotype score that she used: she said that the negative impact of the side effects and possible long term damage from the chemo compared to the relatively low benefit I'd likely see from it made it not worth it in my situation. I think having a HIGHLY ER and PR positive tumor played into it - my tumor had Tamoxifen written all over it.

So perhaps you're less ER/PR positive? Or younger? It could also just be the way your oncologist operates. None of this appears to be an exact science, sadly. That's been one of the most horrifying things to me - how different the approaches can be. You end up having to do a lot of reading and then really almost "picking" your plan. Like with my surgery - I had a lumpectomy but no one would have batted an eye if I'd chosen a bilateral. Mind-blowing.

I didn't have any discussions with the kind of super-specific percentages your onc appears to be giving you. I think if it was calculated out, my benefit from Tamoxifen is probabaly not that huge either. The theory seems to be that it's more likely to come back to haunt me about 10 or 15 years out, due to how it grew the 1st time...

I'm just about two years out from diagnosis, and still feeling good about my choice of surgery, my lack of chemo, and my prognosis.

Please do consider talking with another oncologist. I think that with the variations in options, the MOST important thing is that you believe in the oncologist and the plan makes sense to you. You should feel a sense of "we are doing what we should be doing to keep this from popping up somewhere else."


Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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May 30, 2010 12:52PM - edited May 30, 2010 12:53PM by Seabee

trying--I don't know where your first onc got those figures, but percentages are thrown around wildly in this game. If your  3% possible gain is accurate (remember that means that 3 out of 100 women may benefit to some degree), you have to weigh that against the risk of chemo, which is also in the 3-5% range, depending on what they plan to invade your veins with. But  percentage wise, there is a 97% chance that you will neither benefit from chemo nor die of it.

Now if you get a high risk oncotype score, that's an entirely different matter. Then the benefit clearly outweighs the risks.

Per spem vivo. Dx 9/9/2008, ILC, 2cm, Stage IIB, Grade 1, 3/23 nodes, ER+/PR-, HER2-

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