Opinions and/or statistics wanted...
Hi all,
I have found message boards to be very helpful in the past, and I am really hoping to get some opinions from what looks to be a wealth of knowledge on this on board.
My fiance (36 years old) was diagnosed with breast cancer on June 30th. I'll provide all the details (I'll do my best to get the terms and acronyms correct) we know thus far...
Right breast
1 lump of IDC - 2 cm - Estrogen positive (weak intensity), PR and HER negative
1 lump of DCIS - 2 cm
All of the cancer above was grade 3.
Left Breast
No cancer found
My fiance is currently recovering from a BMX. None of the cancer invaded any skin or nipple tissue.During the BMX, a sentinel node biopsy was performed, and the full pathology results were negative. Full pathology results showed no micro or macro metastisis. As the oncology nurse said, "not one single solitary cancer cell".
Meetings with the oncologist prior to surgery had her staged at a 1c, and she said if nothing else changed, she would recommend 2 months of chemotherapy to be followed with hormone therapy.
However, knowing the cancer did not invade any skin (dermis or epidermis) or nipple tissue, and no cancer cells were found during the sentinel lymph node biopsy, it appears that all of the cancer is now gone. since she opted for the BMX.
My questions are as follows:
What would chemo actually treat?
Would it be more of a precaution in case there are cancer cells anywhere else?
Who here would go through with chemo considering this circumstance?
What are the statistics of recurrence for similar cases who go through with chemo versus those who don't?
We are really interested in research statistics regarding recurrence and survival, so any research that we can be pointed to would be helpful, but we would also like to know your opinion. Thanks!
Jeremie
Comments
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Hi, Jeremie. First, I'm so glad your fiancee's surgery is behind her, and you sound like her knight in shining armour to not only be there for her, but to be researching some of this for her as well!
As far as chemo, her oncologist will probably order something called an Oncotype-DX, which is a test done on the invasive lesion that was removed. The results of that test will quantify the benefit or lack of benefit chemo will have for her. It's based on more than 20 genetic factors, so is much more scientific than whether or not she had positive nodes, which, along with age, use to be the way the need for chemo was determined.
Chemo is a systemic treatment. If her specific bc is determined to have aggressive characteristics per the Oncotype test, chemo would be recommended to go after any of those aggressive cells that might have escaped into her blood or lymph system.
One thing you will learn if you hang around here, is that two women with seemingly identical stats can come out with very different Oncotype scores. So it's not as simple as comparing your fiancee to others with similar stats who have had a BMX.
A site you might want to look at is www.cancermath.net. I haven't been on it in awhile, but you can plug in various scenarios to see how much chemo might benefit her.
Hope this info' helps, and good luck to you both! Deanna
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Cancermath will give you information, but keep in mind that most stats out there are 5 years old or older...some treatments have improved and new meds have come along that would skew that data.
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Thank you so much for both of your replies! Its useful to know that cancermath.net uses SEER database information from 1987-2007. We have an appointment with the oncologist on Tuesday, so we'll be interested in what she says.
One thing that is pretty apparent, is that the benefit of the hormone therapy the oncologist initially recommended (Tamoxifen) doesn't seem to outweigh side effects and risks (I cannot count the amount of negativity around Tamoxifen I have read on this site alone), especially considering we still want to have kids. It seems to have very little effect on mortality rates and increase of life expectancy.
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I agree on getting the ONCO -DX done before you decide..but the thing that sticks out is the grade 3. Lots of decisions to make and it can be very a very frustrating and anxious time..so I am sending hugs ...
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Do keep in mind that it is usually the people with problems that post looking for help. For instance, with tamoxifen, I have filled prescriptions for dozens of women that are fine taking it and it does benefit those with estrogen positive tumors. Her situation, being weak intensity, may call for a different approach given the fertility concern.
With grade 3 lesions and young age, the inclination may be to go more aggressive. I would strongly suggest a second or even 3rd opinion at some point, perhaps at an academic medical center.
Then, once her choice is made, don't second guess (although she may have opportunity to refine therapy as new information becomes available down the road). Best wishes thru this difficult time.
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Because of the grade 3 of the tumor, an Onco-DX may not be done because it is already know that the cells are very aggressive (fast growing) and that chemotherapy is highly effective on the cancer cells that are dividing (aggressive).
While a BMX was done, no surgeon can possibly remove all the breast tissue. The chemotherapy would be done for any remaining breast tissue and in case there are any stray cells elsewhere in the body. Not having any positive lymph nodes is always a good thing, but there is still about 20% of aggressive breast cancer cells (based on recurrence rates) that spread through the blood stream and not the lymphatic system.
While your fiance is weakly estrogen positive and the hormone therapy is recommended by the doctor, she is very close to being a triple negative. Triple negative breast cancer's are very aggressive and the best shot at staying in remission is to make sure that everything is done treatment wise the first time around.
Yes, I would do (and did) the chemotherapy and herceptin (I am hormone negative, Her2+). I was also stage one with negative nodes.
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Jeremie, lst of all, I want to say I think it is wonderful that you are doing research for your fiance' like this. I would do the chemo....just because they did the mastectomy, found nothing in the lymph nodes, does not mean that there could not be that one lone little cancer cell out there that could show up later. The chemo may be considered precautionary, but in my opinion prevention is better than treatment....probably a poor comparison, but since I work in a dental office will put it like this...it is easier to prevent periodontal disease than it is to treat it. My initial cancer was so small it was not even a stage yet......it was decided that I did not need chemo since they took out 19 nodes when I had my mastectomy and all were negative. I also was not put on tamoxifen even though I was ER+ because this was 1990 and they were still doing trials on it. So 8 years later after complaining of pain for about two years, they did a bone scan and all of a sudden I have graduated to Stage lV. If I knew then, what I know now, I would have begged for chemo as a preventative. It's not fun, but it would be worth it not to have to deal with it later. Just my opinon,but you were asking for those. Again, your fiance' is lucky to have your support.
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I realize that I didn't answer one of your questions about chance of recurrence. I know that in my case which isn't the same as your fiance's as I am HER2+ and my tumor was much smaller, my chance of recurrence after the mastectomy without chemo was 60%. Again, it is the grade 3 that is the reason for concern.
Talk to the oncologist about an estimate based on her pathology.
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Everyone, thank you so much for your continued input!
I think she is certainly leaning towards completing the chemotherapy at this point. I don't think either of us can bear the thought of recurrence and the possibility it could have been prevented...
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