family history

mtbmom · April 2008

family history

mtbmom · April 2008

I spent the last week visiting my family and got my mom's path report. Within 6 mos she went from calcs and alh to Lcis and ALC with 3 lymph nodes involved. I don't know what to think. My tests went from nothing in oct 07, to alh and calcs in dec/jan, and then excisional bio with lcis in feb. Is this genetic history typical? I tested brac-, but seem to be following my mom's exact diagnosis. I am on tamoxifen, but am having a difficult time with the side effects. I think, that after reading mom's report, I'm just scared. Help, anyone?

Anonymous · April 2008

mtbmom---I'm sorry to hear that you're having a hard time with the tamoxifen. It sometimes takes a few months for your body to adjust to the medication, so hopefully any SEs you're having now will become more manageable. If your mom went from ALH to LCIS to ILC within 6 months time, it's very likely that the ILC was there initially and just wasn't detected. LCIS itself is generally not thought to become invasive; my surgeon said probably only 5% of the time. (although I've seen that number as high as 17% in my research). Both LCIS and ILC are difficult to image on mammo/US/MRI. I was very fortunate to have my LCIS found on mammo and then confirmed by lumpectomy. My mom also had ILC--the good news is she had radiation and tamox and is now a survivor of over 21 years without a recurrence. I worry about the hereditary progression as well, but it's not a given that we will develope invasive bc just because our moms did. I hope by taking tamox and being very closely monitored with breast exams, mammos, and MRIs, that if anything were to develope, it would be found early. I've got about 7 more months to go to finish up my 5 years of tamox. Please PM me if you'd like to talk anytime.

Anne

leaf · April 2008

I'm sorry you are going through this, mtbmom.

I agree with Anne. I think its very likely she had ILC before her first diagnosis of ALH. Most breast cancers have been in the breast for 4-6-8 years before they are large enough to be detected by any means. And usually ILC cancers grow slowly (from what I understand.)

Of course you are scared, seeing things first hand.

But the only study I've seen with individual info (the Port et al MRI study) where among the 262 LCIS patients and 126 atypical hyperplasia patients (total 378 patients), in a 6 year time period, there were a total of 14 cases of invasive breast cancer or DCIS.

A total of 2 of the 14 had a first degree relative with breast cancer, and 1 additional patient out of these 14 patients had an unknown family history. These are very small numbers, so you can't conclude anything with statistical significance, but this turns out to be about 15-20%, which is not 'out of the ballpark' of the incidence of BRCA - induced cancers (usually quoted as about 5-10%).

So its not like every LCIS woman who develops breast cancer has a bad family history.

When LCIS women do get invasive breast cancer, they get ILC much more frequently than the general population. In the general population, about 10% of breast cancers are ILC. When LCIS women develop breast cancer, about 40% of them get ILC.

Anne is right that ILC is more difficult to see than IDC; ILC is often called 'the sneaky one'. But it often grows more slowly, and is usually responsive to hormonal therapy.

mtbmom · April 2008

Thank you guys so much for your support. I have to say, seeing my mom's path report really set me back. She was in her late 50's, and was on hrt. They found the calcs, and told her to come back in 6 mos. When she went back, the mammo found the calcs and a suspicious area, which they biopsied. This is where it gets a little confusing, and I'm not sure if it's because it was about 10yrs ago, but the first biopsy said dcis. The excisional though came back as a final of alh, calcs, lcis, ilc with3 lymph nodes, stage 2, er&pr+. My path was the same except the ilc and lymph nodes, which they didn't biopsy(even though there was one, and now two enlarged). I have also had a discharge since about 4wks post surgery, that the onc said to watch, but didn't seem concerned about. I knew my mom had bc, but never questioned what kind til now (then I didn't even realize there were different kinds, and she still doesn't understand this), and I can't help feeling very depressed after reading her report. She had been considered a high risk too because of family history, and had mammos every 6 mos. I can't help but think that just finding the right technician who finds more is your best hope.

Sorry guys, I'm really in a funk. The Tamox is making me feel yucky-nauseous and like I'm in a fog. Haven't gotten my pd since starting, and am now 2wks late, and think that isn't helping my head- feel very emotional, and am not ususally that way! My onc seems knowledgeable, but is a man. His response was I could just stop if for a couple of days if it bothered me too much- let's just really play around with the ole hormones! I really plan on giving him a piece of my mind when I see him next week! I just don't think a man can understand how the hormone flux makes you feel.

Thanx again for your input, it really helps to hear some level heads, cuz mine isn't right now!!

leaf · April 2008

I'm so sorry it has to be you, mtbmom. Tamox can make some people really feel awful. I don't think a man can really understand how these hormones feel. Throughout school, whenever I had my period I knew my test scores would be at least 1 grade lower.

If I know a doctor's appointment will be difficult, I like to write down all my questions or comments beforehand.

Thinking of you mtbmom. Let us know how it goes.

Kimber · April 2008

mtbmom,

How are you doing on the tamoxifen? When did you start? Do you mind if I ask your age? I have been having nausea and fatigue and I am not sure if I should attribute it to the tamox since I had been doing pretty well. My oncologist said if I didn't have SE's in the first 4 weeks, I wouldn't have any...... Just curious how you are doing. I will be 44 on May 5 and I haven't had a period since starting tamox - I was regular up until then.

Your LCIS/Tamoxifen Sister,

Kimber

leaf · April 2008

Hi Kimber. My mild hot flashes on tamoxifen didn't start for 1.5-2 months after starting on tamoxifen. I'm peri-menopausal anyway, so they could be just nature taking its course.

Kimber · April 2008

Thanks leaf. I'm not sure why I am feeling so bad. It seems to get better as the day goes on. Any info about drinking wine while on tamox? I like a glass or two at night and I am wondering if that is a problem...

Anonymous · April 2008

Kimber--I would think if the nausea and fatigue were from the tamox that you would've noticed it earlier on, maybe you're coming down with a bug?

I find that wine makes my hot flashes worse, but I have it occasionally anyway! I haven't read anything that says you can't have wine with tamox.

Anne

Kimber · April 2008

Thanks Anne, I think I may just have a bug. I am not used to this "new normal" yet....

mtbmom · April 2008

Kimber- I saw my onc on monday, and also spoke with the dr. at the breast clinic monday. It's interesting, cuz when I first called him after starting and complained of nauseau, he was suprised and just split my dose to 10mg bid. In the past month I lost 4lbs (so the ladies who ?ed the loss of weight statement on the tamox ses can believe it) and spend hours feeling like I did when pregnant(I had severe morning sickness with both of my pregnancies). Anyway, finally monday he said he has seen severe nauseau sometimes, and started me on zofran to help, but also put me back on the 20mg sid. Currently the zofran helps for the first 4-5 hours, and since I'm on just one daily, we might have to change that. My breast dr. (a female) however, said she has heard of this a lot, because we are messing with our hormones. I just got my period yesterday, 3wks late, and it's very heavy and not normal, so it will be interesting to see what happens there. I am also running out of steam by about mid afternoon, which is very unlike the normal me and have a couple of hours after I take it where I feel foggy/fuzzy headed. I haven't gotten any hot flashes yet, but have started with night sweats and my knees have started aching, especially after I run or work out (again a first, my knees have never ached & I've run for 36yrs). I just turned 47 this January, and although my periods were never really regular, I did get one every 30-36days.

I hope your nauseau goes away for you- it has been miserable for me. I hope this helps you with! hugs- Denise

leaf · April 2008

I am so sorry you are going through this nausea. It doesn't matter how many people have or have not had your symptoms. What matters is YOU.

In the NSAPB-14 study (of node-negative bc after surgery vs placebo, so you don't match the patient population anyway), 26% on tamoxifen had nausea and 24% of those on placebo had nausea. 25% of the tamoxifen group had irregular periods vs 19% of placebo.

Its different for everyone, and its all a risk/benefit situation. I sure hope your nausea and foggyheadedness goes away soon!

mtbmom · April 2008

Leaf- thanks I again for your encouragement. I kinda hope it just all goes away soon! I am calling the onc tomorrow to see if I can go back to the 10mg bid-I didn't feel as fuzzy on that dose, and if I can take the zofran with each dose. I'm still hoping with time maybe my body will adjust better. I really hope all is well with you, and best possible for your friend.

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