Off HRT and feeling terrible!

ncmichigan

I've been reading a lot of information regarding LCIS on these forums and finally decided to write. I hope someone can help me out or at least help me feel better! I'm almost 62 (in April) and was diagnosed in October after biopsy for microcalcs. I had been on low dose estrogen/testosterone since my Oct. 2003 hysterctomy. I've had 3 biopsies since 2004-two found fibroadenomas and this one found the LCIS. My PCP took me off the HRT immediately and I've been miserable since. I have horrid hot flashes day and night. Just last week, I had 4 in two hours. They are so bad I sometimes feel like I'll pass out, other times I just feel light-headed and "spacey". I'm having difficulty controlling my moods and can't get a decent night's sleep, because I'm awake all sweaty then freezing 7 or 8 times a night. It doesn't make for a great sex life, but now I'm having severe pain with sex, too. It's not an issue of dryness either---I'm seeing my doc next week to check that out. Both my PCP and onc thought the symptoms would decrease with time but they seem to be getting worse. I'm scheduled for an MRI in February then to see the onc to start on Tamoxifen. I am really upset at the thought. I am thinking about "quality of life" vs. "quantity" and I'm ready to consider PBM rather than go through this much longer. I have multiple other risk factors besides the LCIS, including a sister diagnosed at 48 and passed away at 50. I'm sure some with invasive cancer will think I'm a "whiner" or a "wimp", but it really is a miserable existence at this point in time. I have always been a strong, positive person in the past, but this has me really emotional.Has anyone else had a similar experience? If not, does anyone have any advice for me? I will appreciate hearing whatever anyone has to offer. Thanks so much.

Anonymous

Our situations are a lot alike---I was diagnosed with LCIS  almost 6.5 years ago and I also have family history of bc (mom had ILC); I went thru immediate surgical menopause after an abdominal hysterectomy almost 5 years ago without the benefit of being able to take any HRT. (due to the high risk of bc). I chose to tough it out with the hot flashes, insomnia and achiness (the first year was rough, but it did level out over time), but a lot of people find Effexor works well for the hot flashes. You might want to see how you react to the tamoxifen (I took tamox for 5 years, now take evista and fortunately tolerate both meds pretty well), and consider effexor if  needed. Please feel free to PM me if you'd like to talk.

Anne

WendyInCalif

I hear you!  The same thing happened to me.  Immediately, the patch was removed without a tapering and within 24 hours, I was having hot flashes every 7 to 15 minutes.  In my case, I also experienced a Prodromal symptom which I can explain only by stating that it was a feeling of great unease, agitation, nausea, like severe flu symptoms.  If I was in the middle of something, which I usually was, this was quite distracting to say the least.  I still have this 2 years later but now they occur about 1 time an hour.  The heat flush that followed was of course when if alone I riped off my clothes and looked for a breeze and a cold drink.  It sucks big time.  It can take me from having a joyous moment to feeling like I need to lie down. 

This "Change of Life" is indeed a change of a major sort.  I so miss HRT.  I have very little energy, no sex drive (am single and well, I think not having a sex drive will keep me from ever wanting one now).  Whenever I am upset by any news, immediately I get a hot flash, hey, am having one right now just thinking about it!  Very power, this estrogen, and had I the money I'd seek bioidenticals because the quality of my life has suffered.  I have no energy because my sleep is disturbed. 

After a hot flash, I feel like I need to shower and change clothes but how many times can one do that in a day?  I feel your pain.  Two years later, at age 52, I do now they are lessening but still present. 

But taking HRT with ER positive breast cancer would be pushing it.  Especially since I opted out of Tamoxifen, Evista, and a few others which only made me feel ill and old, and I have to work and function being alone so that is a risk I have to live with.  There are others who will come here to give you ideas, such as a med called SSRI which may help you somewhat. 

ncmichigan

Thanks for your responses, Anne and Wendy! Sometimes I think it helps just to know you're not alone! I do take an SSRI (Celexa) and it did help with the menopausal symptoms while I was on the HRT. Now, I'm not so sure it does anything. Of course, without it I might be even worse-YIKES! My onc also did mention Effexor, but I've heard some bad stories about that, too. Maybe I just have to be patient and take one day at a time and hope for the best---easier said than done sometimes! Maybe all of this is just too new and overwhelming and I just need time to adjust. In any case, I appreciate the info and the support.

PS: How do you PM? I'm sure it's probably easy but I've never done it here. My husband and son both think I'm technologically challenged!

leaf

To PM, click on the person's name (listed in blue near the post.)  In the upper right corner (in blue) it says 'Send member a private message'.  Click on that, and you can post.

SSRIs are a group of meds, which some find helpful.  I take sertraline (Zoloft) because I have something like PTSD.  

The usual choices for women with classic LCIS are:

a) watchful waiting

b) watchful waiting + antihormonals

c) Bilateral prophylactic mastectomies.

In this small 2005 study,people had a variety of perceptions and choices.

The patients' perception of lifetime risk for invasive cancer was variable. Surgeons performed the majority of counseling. Fourteen patients (35%) were placed on a selective estrogen-receptor modulator. Eleven patients (28%) had bilateral mastectomy. Three patients had unilateral mastectomy. Screening recommendations included an annual mammography (64%), a professional examination (64%), and a monthly self-breast examination (75%).http://www.ncbi.nlm.nih.gov/pubmed/15862506

This means that about 30% of this group chose watchful waiting alone.  That is also a very valid option for some people.

It is a very personal decision.  No one can tell you what the right choice is for YOU. 

There is no rush to make any decisions.  You are NOT in the position like our invasive cancer sisters, who sometimes only have weeks to decide what to do.  I've been diagnosed with LCIS since Dec 2005, and I'm still not sure if I will be pursuing PBMs eventually.

You may not know if antihormonals will make you feel worse.  In fact, the Evista info page says women who have hot flashes are not barred from taking Evista.  Side effects do not happen for EVERY woman.  If you wish, you can try some antihormonals, and stop taking them if they aren't for you.  It is YOUR choice.

Yazmin

ncmichigan:

I also went through surgical menopause in 2006. I got fantastic relief from my terrible hot flashes from Evening Primrose Oil (twice a day, 1.300 MG). The down side of Evening Primrose Oil is that it takes weeks and weeks to start working. Meanwhile, one might have to tough it out.

ncmichigan

Thanks, leaf, for the info on PMs and the info and encouragement. I may get lucky and do fine with the tamoxifen. And, I know I have time on my side and I'm grateful I do have choices. So many other women do not.

Thank you, Yazmin also, for the suggestion on Primrose Oil. I'll check with my doc if that a possible option for me. I do appreciate the kind women on this forum who take the time to respond and help others. You're all wonderful!

nc

Anonymous

Primrose oil helped me for a while (about 9 months), but then seemed to wear off over time. (but I was only taking it once a day as I recall). I take melatonin to help sleep; I tried glucosamine for the achiness but it didn't help even after 5 months, so now I'm trying omega 3 fish oil.

anne

Yazmin

Ann: Now you got me worried  that Evening Primrose Oil won't always work for me. I have noticed that every time I "slack" for just a few days, my hot flashes flare up, so perhaps I just need to keep taking it religiously. But now that I know it might stop working, I am going to start looking into another safe alternative......

leaf

Here are some suggestions http://www.ncbi.nlm.nih.gov/pubmed/16477892

This study opines that more info is needed http://www.ncbi.nlm.nih.gov/pubmed/15571467

http://www.ncbi.nlm.nih.gov/pubmed/1471617

ncmichigan

Thanks again, ladies, for the helpful info. I have been taking omega 3 fish oil for a couple years on the recommendation of my eye doctor. Hope it works for this, too! I'll check out the studies you recommended, leaf---I think I've been on every web site I could find, including PubMed, but I'm sure I haven't seen all that is out there. I've found out that LCIS is not well understood and not well studied, but I think the researchers are trying to do more. I tried to find a research study in my area, but nothing came up in my search. Anyone know of one in the Ann Arbor, Michigan area?

Wishing you ladies good days and ahead!