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Topic: Question about risk

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Aug 26, 2007 02:42PM

Motherbeartosix wrote:

I haven't had my lumpectomies yet, but based on two stereotactic biopsies, I have DCIS in right breast, and ADH in left breast. How does having both affect my future risk factors? Or if I had DCIS in both breasts (a possibility), how does that affect my future risk factors? (Trying to decide at what point I would have masectomies.)

When I talked to my doctor, we discussed my risk based on the DCIS. Is the risk the same or more?
DCIS, grade 2-3, SNB 3/3 neg, ER+, PR+, surgery 9/20/07
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Aug 26, 2007 03:22PM awb wrote:

I know the risk is increased 3x to 5x with ADH, I think with DCIS it is about 4x to 7x (I could be wrong, but I'm pretty sure that is what I've seen written). The numbers remain the same whether you have it in one breast or both, but both breasts are at risk. (the risks are not added together; DCIS "trumps" ADH because it is a step further along the bc spectrum and more serious in nature with higher risk.) I was diagnosed with LCIS almost 4 years ago (risk increased 7x to 10x) and am taking tamoxifen and being very closely monitored by mammos and MRIs (one coming up in 2 weeks) which is my choice for now. Some might not be comfortable with my level of risk, but it is extremely individual and one we each have to choose for ourself.

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Aug 26, 2007 03:32PM Motherbeartosix wrote:

Thanks! I was quite sure that the risk wouldn't be added together (statistically, that woudn't seem to make sense, but what do I know? ), but I also didn't know if the risk might be greater somehow.

I still haven't made a decision what to do, but I feel very confident that I will have studied enough, so that once I get the results from the lumpectomies I will be able to make an informed decision that I can live with.
DCIS, grade 2-3, SNB 3/3 neg, ER+, PR+, surgery 9/20/07
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Aug 26, 2007 04:20PM leaf wrote:

Quote:
I was quite sure that the risk wouldn't be added together (statistically, that woudn't seem to make sense, but what do I know? ), but I also didn't know if the risk might be greater somehow. .



I do not know if we have this information for DCIS + ADH.

I would be very cautious about making such blanket statements.

I think they have enough problems in assessing the risk of PLAIN DCIS without atypia. http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

I would want to see the citations supporting the assertion that the risk factors for DCIS + ADH are not additive. I do not know if the risk is additive or not. Obviously, most people think that some breast risk factors are additive as that is what happens in the modified Gail model on the NCI website (which is NOT valid for DCIS.) http://www.cancer.gov/bcrisktool/

I do not know that we have the information about this. I tried searching on Pubmed for at least 15 minutes and could find no journal articles opinining on the risk of DCIS + ADH or atypia.

In other words, some risk factors for breast cancer are probably additive and some are not, and I cannot find obvious studies in Pubmed that have info about whether atypia increases the risk of breast cancer for women with DCIS or not. If they have trouble assessing the risk of women with plain DCIS, they probably have even more trouble assessing if ADH increases this risk.

Leaf (LCIS + ALH)
Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 26, 2007 04:32PM Motherbeartosix wrote:

But I think the risk would increase in some statistical fashion, but not necessarily be "added" together, otherwise you might find yourself with more than a 100% chance of getting cancer, which in itself is not a statistical possibility!

I did find this recently: http://surgpathcriteria.stanford.edu/breast/adh/printable.html
DCIS, grade 2-3, SNB 3/3 neg, ER+, PR+, surgery 9/20/07
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Aug 26, 2007 04:39PM leaf wrote:

I don't know if we have the information about if or how ADH may increase risk if you have DCIS.

For example, if the risk for condition A is 5% and the risk for condition B is 2%, ther risk for condition A+B could be 5%, 2%, 7%, or anything inbetween such as 6%, or it could be 10% or 0.5%.

All risks need to be compared to the populations to see if they are valid.

I can't find papers in Pubmed http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed that cite the risk of bc in women who have DCIS + ADH.

Pubmed is a huge database of scientific journal articles; there probably isn't a bigger database. It is what probably most scientists use.

Maybe others can support their assertions with scientific citations.
Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 26, 2007 04:44PM Motherbeartosix wrote:

I'd certainly be interested in any study anyone knows about. I know that DCIS and ADH can be found at the same "site," so I don't think that would increase anything. I think it would have to be found at two different sites. In my case, I have ADH in one breast, and DCIS in the other.

Does anyone know what the statistics are for recurrence for a woman who has DCIS in both breasts? I wonder how that affects recurrence statistics.
DCIS, grade 2-3, SNB 3/3 neg, ER+, PR+, surgery 9/20/07
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Aug 26, 2007 04:56PM leaf wrote:

I don't think they can exactly estimate the risk of atypia alone.
As you see in this paper, for the women with atypia, multiple foci
and microcalcifications gave a greater risk, but family history did not. http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

If we can't estimate the risk of DCIS **or** atypia, we are unlikely to get a very accurate estimation of the risk of both together, since there are many fewer persons that have BOTH DCIS and ADH than have DCIS *or* ADH.

I wish there was the information available so you could make better decisions based on numbers. I don't know if they are out there. I certainly wish they were. I know it is horrible to make these decisions without knowing the numbers.
Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 26, 2007 05:05PM leaf wrote:

I don't know if we know about DCIS in both breasts either.
This paper seems to imply that is unusual. http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

This paper gives some factors that put DCIS patients more at risk for recurrance, but it is only one paper. www.ncbi.nlm.nih.gov/sites/ent...[/url] www.ncbi.nlm.nih.gov/sites/ent...[/url]

I hope this helps. I know you are making very tough decisions.
Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 26, 2007 05:23PM Motherbeartosix wrote:

Thanks, leaf. I really appreciate your taking the time to help me out.

I don't know if I'm in denial or not, but I feel so calm about all of this. I suppose that compared to the panic attacks I've had in the past and thought I was having a heart attack, this seems so much easier to handle. I'm SO MUCH more afraid of heart attack, stroke, etc., that I know I don't want to take tamoxifen.
DCIS, grade 2-3, SNB 3/3 neg, ER+, PR+, surgery 9/20/07
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Aug 26, 2007 05:54PM leaf wrote:

All these choices are very individual, and you will make the best decision for you. If I come across more info, I will post.

It is possible they have more info out there. But it does help to find out what info people are making their recommendations on. For example, you may want to read the Li paper http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum . This study looked at almost all the DCIS patients in the US from 1988-2001, so its a large number of patients, so this will be one of the biggest, most recent studies on DCIS there is. To download the article, click on the icon on the upper right, then above the abstract title in the middle it says "full text" and click on .pdf or HTML (whatever is best for you- for me the pdf file is much easier to read - but I have a Mac) to download the article. There are some problems, such as because multiple pathologists are reading the slides, there may be disagreement about DCIS diagnoses.

Unfortunately, this database, the SEER database, does NOT track atypia, so we don't know about the impact of that. But you might get more of a feel about DCIS in general, and who was at more risk.

Thinking of you.
Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 26, 2007 06:56PM leaf wrote:

Here's other studies that might be of interest to you. None of these directly address your questions, unfortunately.

http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

In this study, atypia did not significantly change the outcome when patients were intitally diagnosed with INVASIVE disease + atypia. http://www.ncbi.nlm.nih.gov/sites/entrez..._RVAbstractPlus

http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum
Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 30, 2007 07:15PM - edited Sep 30, 2007 07:15PM by Indigoblue

Thanks Leaf!  Great info, as always. 

Motherbear,

Thanks for this post!  I have panic attacks, and there are days when I have no memory as to time, memory, who, what, or where.  It's frightening when you live in this mind-state of reality vs. non-reality, and denial vs. "I'm fine", or am I not, or am I supposed to be fine because the cancer "people" tell me I'm fine, yet I know I'm not fine.....

I know it's probably not helping you to hear about my moans and groans, but sometimes it's reassuring when  you realize you're "not crazy" and that others experience the same side effects, fears, are somehow maintaining a positive and motivating outlook on life.

(not me, unfortunately, but I do try, I realllllly do try!)

Happy days are sure to come, oh la dee dah dee dah deee dah...

Indi

Dx 11/30/2005, IDC, 2cm, Stage IB, Grade 3, 0/4 nodes, ER-/PR-, HER2-

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