Topic: No PBMs for now - stepping back

Anne, I too believe in listening to the universe. These aren't easy decisions, as you say. Your decision to step back for now doesn't mean things or you can't change in the future. It sounds like you have a sense of what is best for you for now. That's all anyone could ask. The only thing that matters is what you feel is best for you. I'm glad things are coming together for you.

Thanks for the reinforcements. I am looking forward to my summer now. I feel a little silly for having gone through all the motions - getting letters for the insurance company from my doctors, telling people, etc. I'm not sure how to explain my decision to the bs, but it was, after all, my own initiative that started the process. I just wish there was someone like a counselor just for this type of process. I would like to be able to talk with someone knowledgeable about LCIS, risks, etc. who would listen and ask all the right questions to help us through the process.

Anne

Hi Anne

I think that is GREAT that you made this decision and feel so good about it. I too don't think you should feel silly about going through all the motions. I too have been going through them. I started the conversation " Newly Diagnosed with LCIS and Puzzled" back in Feb, I think it was. Anyway maybe you read it. I was diagnosed with LCIS after having breast reduction surgery when the pathologist analyzed the tissue like they usually do after surgery. It is in just one small spot but enough for me to FREAK OUT!!! I have been to Breast surgeons and Oncolgists. They don't suggest going right to a mastectomy but try the tomox etc, i do NOT want to do drugs if i can help it. My first thoughts that lasted many many weeks were to do the bilateral mastectomy and be done with it.My main thing was that I need to be here and healthy for my 3 young kids. I don't even have it in my family but you just never know is how I looked at it. But over time I just started realizing that I am ok and I do not need to rush into having this ASAP!! I went back to work after my reduction and starting getting busy thinking of other things, my kids have kept me busy as usual etc. I lost many hrs to sleep as well and then also began to sleep better and better. It was soo nice. For some reason I am waking up again thinking a little more - I am hoping I don't go down that path again, not yet. I very well might do it at somepoint but I need to keep reassuring myself that I will keep a close eye, eat healthy more veggies for me etc. Keep in touch. Allison

The studies I have seen say that most high risk women do NOT take tamoxifen, or get PBMs, even if they are BRCA positive or have a significant family history, at least in these studies.

http://www.ncbi.nlm.nih.gov/pubmed/14588127?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

In this study, only 63% of high risk were offered tamoxifen, and less than half of those offered tamoxifen took it. http://www.ncbi.nlm.nih.gov/pubmed/15112259?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

In this paper, it sounds like 5 out of 30 LCIS patients had PBMs. http://www.ncbi.nlm.nih.gov/pubmed/16910353?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum


My gynecologist won't deal with my LCIS treatment options-she is more than happy to do clinical breast exams and handle any below-the-waist issues.


I wonder how many LCIS patients your gyn has seen, and when she took the data. ? How long has she been in practice? I know there are more LCIS patients being discovered recently as more breast biopsies are performed. My oncologist (who is getting ready to retire) said he has seen 'very few' LCIS patients. I really doubt if 'most' LCIS patients get PBMs now-a-days. I know when I looked at a breast reconstruction site which showed photos and gave their diagnoses, only about 1 out of 50 patients had LCIS (without anything worse), and it did not say whether or not that patient had BRCA or a significant family history.


I agree that a genetics counselor has both the therapeutic skills and has some knowledge about LCIS, particularly if you have a significant family history (and thus may be BRCA or other bc gene positive). But they do not specialize in LCIS, or even breast cancer, AFAIK.


But I think the very most important thing is to find what works for YOU. You are not a statistic.

Peaches:
I'm glad you did what was right for you. Isn't it a woman's perogative to change her mind? EMBRACE IT! You are captain of you ship!!
If anyone had told me even a year before my surgery that I would have had bilateral mastectomies, I would have called them nuts. Seriously. There was some episode of Gray's Anatomy where a woman had prophylactic masts, and I remember calling my mother and saying: GOOD GRIEF. Hey, the laugh was on me!! Who knew that my feelings would change?

You have to do what makes sense to you when there is medical uncertainty, and trust your instincts. Even now . Someone asked me if I regret not having done it sooner, and I do not. All things in their own time...I did not feel my risk was high enough to warrant life changing surgery before the day came.

Your thorough research indicates to me that you take good care of yourself, so enjoy!! If you are not truly compelled to take this journey...my advice is to hold off as you have done.
Be well!!!!
Moogie

Saw my regular bs today to go over the decision and talk about future monitoring. Because my last mammo & MRI showed nothing ominous, I can wait until next Feb! I will see her again in August for CBE. Also, I started knocking my Evista down to once every 3 days. I did it before a plane trip because of the clotting risk, found that I slept better and didn't have the urge to binge as much. So, when I got back, kept on that schedule. I see the onc next week. The bs said wonder what he'll say. I say that this is my compromise. Taking the Evista every day last summer was hell, and I've gained 10 pounds even with increased exercise. Since I changed the schedule, I've lost a few pounds. If I can stick to this schedule, I can stand it. Then I'll see what happens next February.

Oh, and one more message from the universe - my cat died Monday night, my lovely little Misty who has been my baby for 16 years. If I hadn't canceled the appointments on Wednesday, I think I would have had a melt-down from the combination of stress. I think God knew I couldn't handle it and sent me those signs.

Anne

Peaches - I'm sorry about your pet.  They become part of the family.

I think you did the right thing. If in a few months you find yourself obcessed with worry you can re-think it.  But I have to agree with you that it's a pretty big move for something that probably won't happen. It's really all about how you feel.

Would you like a bird? I have one that I'm not loving :( 

oh my, I am new to this site and diag. with LCIS, etc. but not invasive ...not encouraged to do mastectomies, but they act like if I don't take Tamox, I will surely perish ! I thought it would be so easy to just take it and IT'S NOT ! I hate it.

It is so reassuring to see so many similar stories ---not that i wish any of this on anyone! but, there really is little out there. the Docs just sort of lay their opinion on us and we're stuck with it.

I could read all day ! and i might just do that...or pray..or something ! thank you all for this helpful info,

Hi Save,

Sorry to hear of your struggle with the Tamox.  I tried it 6 months ago for 6 weeks and gave up due to extreme nausea and GI problems.  I decided to give it another try a few weeks go.  This time I started at 2.5 mg for week, then 5 mg for two weeks, now up to 10 mg.  I'll keep going up 5 mg and see how I feel.  This was the only way I could do it and tolerate it. 

I had LCIS, DCIS, and IDC.  The finding of LCIS puts me at a higher risk for a recurrence. 

I don't like taking Tamox or the Arimidex I tried.  It sucks.

LCIS sucks because of the constant surveillence needed to keep an eye on it.  No one knows if it will turn into cancer or not.  Like most things associated with b/c, it's a crapshoot and we can only do the best with whatever tools are in the arsenal.

I had decided not to go with any anti-hormonal treatment six months ago.  But gave it another thought and decided to give it one more try.  The jury is still out.

Best of luck to you.  Keep us posted on how you're doing!!

Bren

After lumpectomy, chemo and radiation, I was on Tamoxifen for 2 years, and felt nausea most of the days.  It never occurred to me to take it at night, before bed.  I am now on Aromasin, taking it just before sleeping, (new oncologist suggested this) and I have very few side effects.  However, Tamoxifen gave me cataracts, which nobody warned of, so that is another drawback to the drug.

Save- I've just been on Tamox for a couple of months now.  Like BinVa, I've had a terrible time with nausea.  I also had problems with feeling fuzzy headed for several hours after taking it (it would hit about 1 hour later, with the nausea).  I tried both am and pm.  My onc then reduced my dose to 10mg twice daily, still had nausea (lost 4lbs the first month), so now I take Zofran with it, but only when the nausea is real bad, cuz the Zofran has some unpleasant side effects as well. I go back to the onc on May 5th, and we'll see what he says at this point.  I wish you luck with it.  I feel "damned if I do & damned if I don't" with it, and since they don't really know what to do after 5yrs, I almost feel like I'm delaying the inevitable (I have a lot of bc in my family).  We'll, see, since I now have to go for another biopsy for the other side on May 13th!  Anyway, good luck and keep trying-it seems to be the only option that you can change your mind on at this time (as opposed to pbms).  hugs to you-Denise

save, don't let yourself feel weird. Everyone's body handles things differently. What you are experiencing might be a rare side effect, but that doesn't mean it isn't happening. I had a "rare" reaction to an antibiotic, told my doctor not to give me that drug again, and he, in his infinite wisdom, thought I was imagining things and gave me a related drug. Guess what? Same side effect. So, trust yourself. If you are having depression, tell your onc.

Anne

Hey save- I feel for you!  I just got back from my onc, and guess what?  Another drug, metoclopramide, to help with the nausea and constipation(from the zofran).  I went from being a healthy person who ate all natural, took no drugs of any kind three months ago, til now.  Now, I take 3 drugs, and feel sick constantly.  I also have been feeling just down, and I'm not sure if its from the drugs or how they make me feel.  The larger dosage of tamox also made me feel fuzzy headed, like motion sickness and I couldn't think straight.  I too felt much better when I stopped for a couple of days-I noticed the difference within a day.  I wish I had some answer for you, but the best I can offer is call you onc and tell him your symptoms and make him work for his salary to make you better!!  Good luck & major hugs- Denise