LCIS with Family History

Momof6littles · March 2016

I'm in the same boat as many here. I have just been diagnosed with (LCIS - you know, "not really cancer") but have a significant history on both sides of the family:

My mother died of pre-menopausal breast cancer, her brother has had Hodgkin's lymphoma, her mother (my grandmother) had uterine and bilateral breast cancer (one being triple resistant to hormone therapies), my grandmother's brother died from pancreatic cancer, another died from Hodgkin's lymphoma, grandma's aunt died of breast cancer. A second cousin who is male had breast cancer. On my father's side, my father had bladder cancer at 40, died of pancreatic cancer, his sister had ovarian cancer and bilateral breast cancer, his other sister died of breast cancer, and his youngest sister died of an aggressive cancer that found in her liver but wasn't exactly identified (but is now suspected to be ovarian cancer, but who really knows), two of my cousins just were treated at 50 for breast cancer. Two of my grandmother's sisters died of unknown cancers that were found metastasized to the liver (this was in the 1920's), but I wouldn't be surprised if they were breast or ovarian. My mother's entire family comes from one town in Slovakia, the emigrated to the US together and intermarried. So there's a limited gene pool on that side.

I still am awaiting an MRI to see if there is anything else, and will go for genetic consult for testing April 4th I'm just sick right now, trying to decide what to do. I want to do a double mastectomy (even though LCIS is not really cancer). But what if the tests comeback negative for mutations do you just follow the family trail of cancer and make a decision without a positive?

Advice? Thoughts? Stories to share?

LisaAlissa · March 2016

A good genetic counselor should be able to help you sort through your family tree and the various cancers. Generally speaking, they will ask you to put together family information for them before your appointment, so they will have a chance to study your family. Since you have an appointment, if they haven't provided forms, etc. for you to use in providing that information to you, I'd call them and ask if you should have received it.

When you're laying out your family tree, you may discover that there are close relatives whose history you don't know. I found it interesting to inquire of family members for details I didn't know. But it does take some time, so if they haven't told you what information they want you to provide, you need to check with them soon.

Based on their analysis of your family and the history you can provide, they may (probably?) will suggest some genetic testing. But the history and types of cancer, causes of death and other illnesses are really, really important.

HTH,

LisaAlissa

Momof6littles · March 2016

I have an extensive history. Well, as extensive as I can get. Much of my family can't remember exact details. There are a few cancers listed as liver cancer, but primary liver cancer in adults is fairly rare. It's more often a place of metastasis. I have what I know attached below (if it works).

My question is, what to do if testing dies not come back positive. I know no one can make the decision for me, but I guess I'd like to hear from women who have an extensive history, LCIS, and whether it not they took the watch and wait approach. Is it enough to make a decision based on family history?

farmerlucy · March 2016

I did. ADH and ALH. Mom passed at 29 bilateral BC. I'm just sorry I didn't do it sooner.

Moderators · March 2016

Hi Momof6littles, welcome to Breastcancer.org! Besides experiences from others here in the discussion boards, you may find some helpful information in this article from our main site: What to Do if Your Genetic Test Results Are Negative

Wishing you the best of luck with MRI and further tests!

The Mods

Momof6littles · March 2016

Thank you farmerlucy for your reply.

I see you had your ovaries removed as well. I'm considering that as well. On one hand I feel like I'm over reacting. But I feel like a ticking time bomb now. We're your doctors ok with the prophylactic measures in the absence of a positive genetic test?

Good news is that I finally have my MRI scheduled (March 28). I was hoping my cycle would start sooner than usual so I could move on with things. It's a week early. A little less waiting.

Momof6littles · March 2016

Oh my goodness. I just realized farmerlucy from your signature that you have been dx with BC even after prophylactic measures. I'm so sorry.

farmerlucy · March 2016

It's all good. My surgeon wasn't crazy about the PBM but agreed to do it when the genetic counselor came back with a 50% risk. As it turns out my prebiopsy MRI did see the small IDC but it was passed or missed on the subsequent ultrasound and excisional biopsy. If I had insisted on getting the MRI report I would have known that. It took me three years before I figured I out. So the moral is get all the reports and be your own best advocate. The ovary removal was more a result of se from tamoxifen and not a fear of cancer. I spoke to a gyn onc who said if one is Brca neg the risk of ovarian cancer is very low. I'd be much more cautious about the ovary removal since instant menopause is tough.

Many women on these board have taken the watchful waiting approach. Some have done the preventive tamoxifen. The genetic counselor visit should help with your decision. Also I recently did a 19 gene breast and ovarian cancer test from Color Genomics. It is quite affordable and my insurance refused to pay for any genetic testing beyond Brca. Take care and let us know how every thing is going

Momof6littles · March 2016

Well, I just found out that a cousin of mine has PALB2 and CHEK2 mutations. He is a distant cousin, but you can trace the cancer through the family line from him to my great great grandfather's generation where we have a common ancestor and down the line to me. He has had both DCIS and prostate cancer. And that's just one branch of the family. There is a similar pattern on my maternal grandmother' s side and my paternal grandmothers side.

The genetics will be interesting.

farmerlucy · March 2016

Any type of male breast cancer in the family gets you bonus points with the genetic counselor! Woo Hoo! I had it but it was four or five generations ago - I still got the extra points!

Sorry you are facing this but knowledge is power. I have never, for a second, regretted the PBM.

mkkjd60 · March 2016

I'm glad farmerlucy suggested Color Genomics. Reading your message, I was just about to suggest the same thing (great minds farmerlucy!). With your history, I would really want to know what the heck is going on. I think the testing is about $250 and really worth it. My mom died of bc and I opted to get the test done and was so glad I did. The results may definitely influence your future decisions. Good luck!

Claratmyft · April 2016

Hi,

Okay. Unsure what to do. I am BRCA 2 positive and 53. A month ago by pure luck a small 1.5 mm invasive lobular ca was found in my left breast during an excisional biopsy for something else. However, extensive LCIS was also noted. I know of the bilateral issues. I'm from a medical family and married to a radiologist so I'm fortunate to be receiving good care.My problem is I don't want mastectomies. Yet, I'm being pushed by the breast surgeon, radiation onc and medical onc to do so. I have very dense breast and have been excellent with my servallience. I realize that LCIS is like looking for a black horse on a black night (very hard to see). But, they found and excised the tumor. I am cured for now. Why do I need this bilateral amputation?I'm having a hard time reconciling this. I have always had large breast and they are a part of my self image (for good or bad). I nursed 5 children with them and have grown very attached (as we all are). Just looking for some thoughts or experiences with this type of grey area decision. please excuse spelling errors, my iPod doesn't want to cooperate.

B

MelissaDallas · April 2016

Clara, I don't think those of us with only LCIS are even remotely qualified to advise someone with invasive lobular cancer who is BRCA poitive.

Try reading here:

http://www.facingourrisk.org/index.php

Moderators · April 2016

Hi Claratmyft, welcome to Breastcancer.org. Sorry you find yourself in this situation, we hope you can find support and information here to help you make the best decision!

There are many forums you can join here, maybe worth try the Positive Genetic Test Results forum besides this one. Also, you may find some helpful information in the following articles from our main site:

Prophylactic Mastectomy | Breastcancer.org
What to Do if Your Genetic Test Results Are Positive


Hope this helps!
The Mods

farmerlucy · April 2016

My IDC was found by accident too. I had blue ribbon screening. Mammos, MRIs, thermograms, ultrasounds, all the screening failed. At 51 my radiologist said I had the breasts of a teenager - and that wasn't a compliment. The only thing that found that tumor was the PBM. Surgery is not something any of us want, but it is what it is. If that's what it takes to spend more time with my family, you betcha, take 'em off. It was an easy decision for me. Not once have I regretted it. It is what it is. I'm so glad you have access to such great care! Best wishes.

Momof6littles · April 2016

Have you spoken to someone about your risk right now? I have only been diagnosed with LCIS, plus another questionable area that they want to just watch. I am waiting for the results of genetic testing. If my tests are negative, I'm being pushed towards just increased surveillance. The risks have been laid out before me. I have so many high risk factors that risk assessment tools are not effective. My doctors all say LCIS is not typically treated by aggressive surgery. But MY impression of my personal risk is one that doesn't want to watch and wait.

So the questions are, what is your risk, how do you perceive that risk, if you were to develope more invasive cancer later, how would you feel? Would you regret not having the mastectomy? If you never developed additional cancer but had the mastectomy, would that make you resent the decision? What if you had a mastectomy and still developed another cancer? What is your history, what is your future? How do these risks affect your future?

I don't think anyone is jumping for joy over a mastectomy. I completely understand your feelings. I have nursed 6 children with mine, and was deeply grieving the idea that a mastectomy might be in my future. We all were. But I had to run through all of the scenarios to come to terms with my understanding of my risk and what is acceptable to me. It is a process.

I wish you the best in all of this.

Jpicch · June 2016

hi there! Wishing you all the best! I am the same age. Just wanted to share. I was diagnosed w lcis (extensive multi focular). Brca neg. spent a year of worry w various tests etc. finally had prophylactic bilateral mastectomies / sentinel nodes removed. (Day after Mother's Day.) Three Drs were fully in favor. I could not be happier. Brought my risk down to zero. I was afraid that the pathology from mastectomies would show cancer but it didn't. Feel like I dodged a bullet. And though some may say I was too drastic I say look at what others are dealing with. There is nothing better than losing that worry I didn't do reconstruction so my recovery was a breeze. Wishing you all the best

LCIS with Family History

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