Decisions

fiddlendaydream

So, last April I had my extensional biopsy and they removed several areas in my right and left breast. I have been diagnosed with LCIS, ALH, AHD and FEA in both breast. Over the summer I learned some of my biological father's family medical history ( I never new him or the family). One thing I learned is that we evidently have Ashkenazi Jewish in our family and my grandmother had Uterine, and Breast and possibly Ovarian Cancer. I also have other cancers in my family. I now qualify for genetic testing.

I saw the high risk oncology nurse at the end of August from our local BC center and it is suggested by them that I go on Raloxifene for 5 years.

Just yesterday I went to Brigham and Women's to see what they had to say. Dr. there said basically the same thing that I already Knew except she wants to put me on Raloxifene for LIFE!?

My questions from those on this forum are:

1) Has anyone every heard of being on this medication for life?

2) What side effects have been experienced by others? (I've heard about the hot flashes, which I have pretty good now without meds, LOL)

3) Is weight gain a side effect? I've lost 100 pounds over the last 5 years and really don't want to gain any back.

4) I have high blood pressure that is not really under control at this point (even though I exercise daily, I am no longer overweight and I watch my diet carefully) has anyone experienced any issues where blood pressure is concerned. The Brigham and Women's doctor is not concerned about the blood pressure, but we've decided to wait 6 months to make the decision to start the meds so my PC and I can get the blood pressure stable.

I hope that I wrote this all so it makes sense.

Thank you,

Denise

Yogatyme

Did they discuss prophylactic oopherectomy or mastectomy? I thought these were standard options for BRCA carriers. My sister, niece and I are all BRCA1 + and these options were discussed w all of us from pre-testing through test results.

HopeWins

I didn't see poster say she's BRCA+ However, the LCIS dx should make bmx a covered option if she chooses. I had similar results from biopsy and chose bmx.

Fiddlendaydream - I would do a search for that drug and see if there are any posts. May also want to find out what drugs are similar and search those as well. I'm not sure about BP issues. Some women report no SEs from HT and others cant bare the SEs and quit.

HopeWins

BTW - noticing you posted this in Benign Breast Conditions forum and just want to make sure you're gathering info on LCIS. I wouldn't say that's a benign condition. Pre-invasive cancer is probably a better description. I believe the stat is around 80% of in situ carcinomas become invasive. Science just doesn't know when... did they give you a grade for the LCIS? Size? ER/PR status? Multi focal or one location? Did they have wide/clean margins? There is some science around treatment and likelihood of recurrence/progression based on those answers. You may want to check out the LCIS forum. Sorry, not trying to alarm you.

My first BS downplayed my DCIS dx. When she called me to tell me she said - We do very little, if any, treatment for this. Then more info started coming in and I learned - very little was actually another lumpectomy for clean margins, tamoxifen, radiation and MRI monitoring... I don't consider that "very little". That being said, that protocol would have given me about the same recurrence risk as a bmx.

I'm not suggesting bmx is right for you. It was right for me, but we all make our own right decisions. I just want to make sure you have info on LCIS to help you make treatment decisions because LCIS is typically treated like other bc, minus the chemo. It's not treated like benign breast conditions. To your Dr's point, there is strong evidence of HT success, so I hope the SEs aren't too much for you if that's the treatment path you choose.

MelissaDallas

HopeWins, LCIS IS considered a benign condition that puts you at higher risk. Most women with LCIS do NOT go on to develop cancer and LCIS is NOT the lobular equivalent of DCIS.

LCIS is NOT treated like breast cancer. DCIS is.

Women with LCIS are more closely followed, may choose to take prophylactic tamoxifen or an AI to lower their risk and some with additional risk factors may choose PBMX, but most do not.

SimoneRC

Your decision making may be further influenced by the results of your genetic testing. If you did inherit a pathogenic gene variant, you may be more aggressive in risk reducing surgeries and/or surveillance and medications than if you find you do not have any known pathogenic gene variants.

I do not know anything about Raloxifene. That looks like it is used to prevent and treat osteoporosis. Do you already have osteoporosis or are they suggesting that drug in addition to an Aromatase Inhibitor? I have been on an Aromatase Inhibitor for 16 months. I was in good shape and active to begin with. I have lost a few pounds since beginning the AI and my blood pressure is still very normal. I do probably exercise a bit more now and am even more conscious of my diet. My BMI is 20 at age 53. So for me, aside from some creaky joints in the morning, the AI has not had any negative impacts on my life so far.

Remember, if your grandmother did have a pathogenic gene variant she had a 50 - 50 shot of passing it along to each of her children. Only the children who inherited the gene variant could pass it in to their children and again in that event each of their offspring would have a 50 - 50 chance of inheriting the variant. These variants (mutations) cannot skip a generation and are not automatically passed to children of parents who have them.

Good luck and keep us posted!

SimoneRC

Adding... just read that Raloxifene is used like Tamoxifen so please disregard parts of the above message that do not relate to genetic variant issues! Oops!

momoschki

Fiddle, I was dx’ed with ADH in 2011. I waited until I was fully menopausal and then started to take raloxifene - I will complete the 5 year course that was initially recommended to me thisNovember . It’s interesting to me that Brigham and Women’s is recommending you take it indefinitely- I have been wondering whether I should continue beyond the 5 years.

Raloxifene is a SERM (selective estrogen reuptake modulator) that acts upon the breast cells. It is thought to have a less severe side effect profile than tamoxifen (it doesn’t act upon uterine cells, increasing the likelihood of uterine cancer as tamoxifen does). It is an osteoporosis drug and unlike aromatase inhibitors, it increases bone density rather than lessening it.

In the 5 years I have taken it, I’ve had few side effects- primarily hot flashes and insomnia, but I had those before the raloxifene. It’s very tolerable. No blood pressure changes and no weight gain.

Honestly, if there is a proven risk reduction in continuing to take this for life, I would be quite relieved to be able to do that.

Let me know if you have more questions.

fiddlendaydream

Thank you all for your replies. I recently went to Dana Farber for the Gene testing and I'm waiting for the results. I also saw as part of my appointment a Dana Farber oncologist, she was disturbed about my reluctance to take medication as part of my treatment. She mentioned a couple of other options besides the raloxifene (my BP was 191/91!) (Despite no longer being overweight and doing strength training and cardio I can't get away from the high BP and am back on medication for that) .

So I just had a bone density test and it looks like I have osteopenia, I see my doctor in a couple of weeks to discuss that.

I know that the LCIS, ADH, ALH AND FEA that I have in both breasts are not cancer and most likely never will be cancer but it still is on my mind and I'm sure I'm over thinking all of this.

I do have a question I forgot to ask the doctor, (not important, just curious) of all the markers I have, which, if any, put a person at higher risk. Does anyone know? In other words, is any one of these worse than another? Just curious.

Have a great day!

pegasus68

LCIS and ALH are both types of lobular neoplasia, with LCIS more severe/further along the spectrum than ALH and conferring the highest risk of the lesions you listed. As I understand it, ADH (ductal hyperplasia) confers a risk similar to ALH. The risk conferred by FEA is unclear but seems to be lower than the others. (But like you, I had all of these.)