Sunday, June 06, 2010 Lisa asks

Q: Chemotherapy or not for a 38yr old with Invasive Ductal Carcinoma in Situ.

Just needing insight on questions I should ask and answers I should get from a future Oncology appt for my IDC. The main question is, should I be receiving chemotherapy or not?

I have had a total hysterectomy and was on 2 hormone replacements. I was recently diagnosed with breast cancer, which is/was hormone receptive(her3+????). I was told to discontinue the hormone replacements. I went the optomistic route and chose the lumpectomy with partial node removal first. The pathology report came back that the nodes were borderline negative and the lump positive on all sides. I had a masectomy a few weeks later and another report done. It reported No Residual Invasive Carcinoma seen. Most of the doctor's I've seen don't give you much information and then ask you if you have any questions. Then you are left to think about it and then go online because they can't be reached. I figured I would go online first and ask some questions, then ask them.

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Answers (3)

PJ Hamel, Health Guide

6/ 6/10 6:31pm

Lisa, first thing you want to do is ask for the Oncotype DX test. This is a test that tells you how much good chemo would do you, if you chose to take it. If it's not going to do you much good, then you probably don't need to consider it. If it's really going to be a help, then you'd consider it seriously. If you're smack in the middle - tough decision.

While you're waiting for the results from that, find out from your doctor your risk of recurrence if you do chemo, vs. not doing chemo. If your risk is 12% without chemo, and 9% with chemo, you need to determine how willing you are to risk long-lasting side effects (perhaps lifelong side effects) for that extra 3% of lowered risk. You have to consider the numbers; consider your "worry quotient" (if you don't do chemo, are you going to worry and second-guess yourself forever?); then simply step off the cliff and make your decision. And no looking back!

Also, ascertain what this means: "(her3+????)" - it's important, as your HER2-neu score determines whether or not you take a biologic drug, Herceptin, for a year.

Your doctor will no doubt make a recommendation about chemo, one way or another. But if you're armed with an Oncotype result and recurrence statistics around your diagnosis, you'll be in a better place to either accept or reject his recommendation. Good luck - PJH

Lisa

6/ 7/10 6:38pm

PJH,

First of all, thank you so much for your response, it really helped alot. I found out that I wont be getting an ONCO TYPE test because of the fact(I was told) that I am HER2-neu 3(positive). I was told of the fact that I'd be getting Herceptin but unsure just yet if it will be with chemo(if I decide) or after. I was also told that it can only be given through an IV, is this true? I was also told that I would be recommended for a Hormone Blocking medication for 5 yrs after. Do you believe all of this is necessary and do you have an insight on what type of chemotherapy regiment they might recommend?

PJ Hamel, Health Guide

6/ 7/10 7:25pm

Yes, Herceptin is given via IV. And it can be given concurrent with, or after, chemo. There's some recent data that shows it's more effective given at the same time as chemo, but I think it's also harder on the system... as your oncologist about this. And yes, if you're hormone-receptive, then tamoxifen or an aromatase inhibitor will lower your risk of recurrence; you'd probably take them for 5 to 7 to maybe 10 years, post-treatment. Your oncologist will recommend the chemo "cocktail" that best fits your diagnosis.

That said - it sounds you're very reluctant about all of this. Have you considered getting a second opinion? If you're not currently being treated at a Comprehensive Cancer Center, you might want to access one of those facilities, for the best possible advice. Good luck - PJH

Lisa

6/ 8/10 12:53pm

PJH,

That was very good info and is consistent with what I am being told. I am reluctant, only because of the long term side effects it may cause. I am not being treated at a Comprehensive Cancer Center because my family is military and as long as our facility offers the care, our insurance only pays for that particular facility. We do, however, have a say if we don't find the care suitable once we get started. I will ask if another doctor in the clinic could give me another insight, but I think they will be pretty bias. It wont hurt to try and I will be be in touch. Thank you so much!!

Lisa

6/ 8/10 1:05pm

One more thing, is it possible for you to tell me the most common cocktail given w/Herceptin for someone with my diagnosis.

38yr old HER2-neu 3 Positive

Stage 1 Breast Cancer

Margins look good

Nodes negative

I haven't had very good luck w/doctor's and the one's I have now are so overloaded that they don't give the "bed side" manner you would expect. My Breast Cancer Liason, on the other hand, is excellent. Everything she told me, you have already confirmed. But, she is not the doctor (I wish)!! I just don't want to make the wrong decision based off of being given the wrong information.

Denise

6/ 6/10 9:19pm

1998 At 37 diagnosed DCIS, Her2, Mastectomy, tramflap reconstruction. Was not offered radion/chemo...6 yrs to the day lump in the mastectomy "Tail of the Breast"..only 5% chance of that "they said". Well there was a lump 1/2" max diameter..2 months later double,mutated, became invasive. Then on to the Chemo/Radiation. I would of at least of had radiation- I think. It wasnt offered back then 1998. My BFF, same age, diagnosed 6 mo prior w/lump left breast 3 o'clock area, had radiation - remember I had DCIS, she had a tumor. 5 yrs to the day this had metastisized throughout her lungs, 3 brain tumors- she was devastated. She had TOP NOTCH doctors. A visual disturbance, and taking a step with the same foot twice freaked her out...(early 2004)...she did everything and then some...She passed 5/07 exhausting every possible effort to no avail...We were friends since age ten..Im 48 now, she made it to 45. They did not aggresively pusue chemo in 1998 for tumors that were removed, it was offerered she declined..i didnt know this for some time. She said she thought she would fare well with radition....Well its now farewell to my friend. 1998 my Mastectomy margins were clean, but i got it again...cancer cells are sneaky little bastards!

summer

6/ 7/10 2:21pm

Hi Lisa, Just wanted to give you an example "me"....

I was DX'd at 46 yrs., older than yourself, but also very pre-menapausal.

I was recommened chemo due to the mitosis grade which is on your pathology report. My grade was most aggresive which was a "3" out of 3.

I was floored to think my Onc. would even mention chemo to me, after all I was a stage 1, my tumor was only 1.08 cm. in size, my nodes were Negative(surgeon took 3 out to check) and I am very ER+PR+ & Hert2- which to me meant that all I would need is radiation(had a lumpectomy) and then hormonal therapy, ya know 1 pill a day!

My Onc explained that due to the mitosis grade of a "3" was not good, the cells were very "poorly differentiated" which just was plain bad news, it's an agressive cancer and chemo was needed. Now, I did have my Onca test done, however I had it done well after my chemo. It was a 24 which is right down the middle, not low but not in the "high risk catagory either".

During my chemo I sat next to a lady my age, her Onca was an "8"....... her mitosis grade of cancer was a "3" like mine. I am very glad I did the chemo. If your oncologist feels it's important that you have chemo please ask why and give your self a few days to think about it. It is "your decision". Again, I did panic at the thought of chemo, I took a few days to absorb this info, I researched my pathology report and called my Onc with more questions, in fact I went to 3 Onc.'s to get other opinnions and then I made my own decision to go ahead and have the chemo.

I was DX last August '09, did 8 rounds of chemo, I was given 1 infusion then 3 weeks off in between each infusion so my last chemo was on 3/17/09. I had 36 radiation sessions, last one was last Friday YAY! Done with the radiation! I will now begin 1 pill a day of hormonal therapy for 5 years. Good Luck with your decsion, hope my long drawn out story helps you figure things out a little more clearly! XO, A.K.A. Laurie of S.FL.

Q: Chemotherapy or not for a 38yr old with Invasive Ductal Carcinoma in Situ.

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