Tamoxifen, D&C, Coping

LivingLifeNow

I have been on tamoxifen for 20 months and just had my annual well-woman exam. I was told my uterus was enlarged, so we scheduled an Ultrasound. The Ultrasound showed that I had a cyst on each ovary, 3 fibroids in my uterus, and endometrial lining of 24mm thickness. Wow! Tamoxifen is amazing, isn't it?

So, my doctor scheduled me for an endometrial biopsy the next day. I had to insert a pill intravaginally to open up the cervix, since I had only one pregnancy which resulted in a C-section. Well, I go in for my biopsy and my doctor informs me that my cervix is still too tight, so we have
to cancel the biopsy. Now I need to have a D&C. That is scheduled in 3 weeks and costs a whole lot more than the biopsy!

Needless to say, I am very stressed and wonder how many of you have gone through something similar. When I was diagnosed with breast cancer I felt panicked initially, then had moments of simmering panic, as I like to call it. About 15 month after diagnosis I was amazed that I wasn't thinking about cancer 24/7. Then a friend of mine was diagnosed with BC, a few month later another friend, then three months after that my dad was diagnosed with colon cancer.

Physically, I have felt great from diagnosis through surgery, through radiation and reconstruction. Emotionally, it's another story. How do you all cope and keep from freaking out about every little thing? I do think part of this feeling of constant anxiety is related to the tamoxifen, since I didn't feel like this during surgery or radiation therapy-not until after starting tamoxifen.

Maybe I just need more social networking-ha, ha! Any comments, advice, cheerful thoughts would be much appreciated.

dngdonnelly

It's not just the Tamoxifen, because I have the same feelings without being on it. After 23 years of a very happy marriage, shortly after my surgery, I was feeling like I should leave my husband because he deserves someone better. I feel deformed and hideous, nothing but incisions, scabs and scars, I have to wear clothes that are too big (had TRAM flap reconstruction after mastectomy, and still healing), I'm on constant medicine, etc. The last couple of days even has me thinking I'm just not strong enough to keep going through this (now trying to decide if I should do the hormone therapy; your post is helping me make my decision!). Hang in there; it helps to have a forum like this to actually get the feelings out, since our families really can't understand what we're going through. Be strong, and I will try to be, too!

LivingLifeNow

Gina,

Wow! You are going through a lot right now. Everything is so new. I had a bi-lateral mastectomy and reconstruction. It looks pretty good. Not perfectly natural, but I certainly look good in lingerie--no more sagging or push-up bras for me. Hang in there. It will all get better. And do try to pamper yourself. Go out and buy some new clothes, even if you won't wear them very long. Have a manicure or pedicure. Enjoy life!

I try to stay busy and think about positive things. Not always easy. One of my favorite sayings is "Worrying does not empty tomorrow of its troubles, it empties today of its strength." That helps me put things in perspective. Good luck with your treatment. Keep us all updated.

Pam

jdeking

Hey Pam,

 I went through something similar. I just had surgery in April to have 12 uterine fibroids (3 had grown to size of tennis balls) and 2 ovarian cysts. I have now had 2 endometrial biopsies - one just in the gyn's office - it is a bit painful, and the other when she did the surgery. Luckily there was no abnormal cells in any of the tissue. Apparently my body just doesn't deal well with the extra estrogen tamoxifen produces in our reproductive tissues. I had been on Tamox less than 2 years (maybe 18 months, though I took a one month break in there somewhere).

I still take the Tamoxifen, as I am trying to do all I can to prevent recurrance/mets.

 I also lived life hardly thinking about the cancer, until I started feeling really poorly last December. I was hoping the myomectomy would help but I am still struggling with a lot of the same symptoms (abdominal bloating, fatigue, heart palpitations). I know some of it comes from iron deficiency, You may want to get your iron panel done, the fibroids are little vampires that rob your body of iron.

All I know is now I feel like a crazy lady that constantly thinks about and worries about cancer taking over. It is no way to live, and I am only 36.

 Hang in there, and I am interested to hear from other ladies that may be experiencing this crazy anxiety as well. Hugs!

~Janine

LivingLifeNow

Janine,

I have great sympathy for you young girls who have to go through this. I am 50 now and since my daughter is grown and on her own, I at least had the opportunity to be selfish and focus on my recovery. I think it's more stressful when you are younger.

Although I do not enjoy the tamoxifen, I seriously don't feel any worse than I did a few years ago when I was getting a period every 3 weeks. This is somewhat better. But, it would be nice to feel good a few days now and then. Actually, I was looking back through my journal and found two days in the past 2 years where I mentioned that I had energy. Two out of 700+. Hey, I'll take it!

Hugs back!

Pam

Emma2121

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peggy_j

Sorry to hear you're going through this. I agree with dngdonnelly that some of these symptoms may not be due to tamoxifen. FWIW, I waited about 6 weeks before starting tamox and had a few various symptoms (my knee acted up; a.k.a. joint pain) that I would have blamed on tamox if I had started it right away. Personally I don't think the stress or freaking out is tamox related; it makes sense to me that when new things come up, you might feel stressed. .

In terms of social networking, I love this website but I find it helps to have in-person support too. I'm not a big "support group" person, but I found a guided-imagery class for people with cancer that I go 1-2x a month. Sometimes I chat w/ people after; sometimes not, but I found it helps a lot to be around people who know what I'm going through. a.k.a. my tribe. Any place you can go near you? Our local cancer support center has free counseling services and a buddy system too. Anything like that? Best of luck!

LivingLifeNow

Peggy,

Thanks for the suggestion to join a support group. I'm sure there are some in my area, but since I live in the boonies, I would have to drive into town. Don't know if I have the energy for that after working all day. But I will definitely look into it.

I do have a friend at work who went through this a few years before I did. She has been a great help. I think I would have had a much more difficult time if I hadn't had her to talk with. I am just thankful this topic is so out-in-the-open these days. Can't imagine how women coped years ago.

Thanks for the encouragement. Joining this forum has helped me feel better already!

Pam

traveler56

I have been on Tamox for 2 and a half years and this is the second year I had to have a D and C to see why my uterine lining had thickened.    I did not have fibroids, or any other issues, never had them all my life, I am 54 so I am sure it is due to the tamox.   The D & Cs were very easy surgeries (one was actually accompanied by a cone biopsy as I had some cervical issues also) as long as they send Mr. Pusherman in to help out, i have no problem.  However, I feel like I am at a cross road now as far as continuing to take full dose, i know not supposed to but actually thinking of reducing my 20 mg to 10 as I also have side effects of fatigue (like falling asleep at a red light! - having to pull over half way home of my 35 miles commute) .  AND the weight gain.   I am about 5'1" and always stayed around 106 I am now about 114 and even though doesn't sound like a lot i can't stand it.    i feel bloated and belly fat just won't go away (walking dog every day, zumba 3 days, so not a total slug) and the other is the memory and brain fog......  iwill see my onc in a month and ask about this too, i wonder if my size i could get same result of preventing recurrence on a lower dose.   Good luck Pam i live in the boonies too by the way in upstate ny 

LivingLifeNow

Traveler56,

Sounds like you've really got the fatigue bad! I feel for you. I am better this summer. However, I remember last summer: My husband and I went bowling quite a bit. The one thought that ran through my head over and over again as we bowled was "I am so tired. I am so tired of being so tired!" I don't think that quite as often any more.

Hope your fatigue improves soon. It is NO FUN!

Pam

traveler56

Oh and i forgot the most important part, duh, both d and c's showed no hyperplasia or other uterine cancer type changes so my ob/gyn is giving me a year away from the trans vag so we don't have to go thru the surgeries again.  He feels it is all tamox related, however, that doesn't make me feel much better about taking it.   i had 2 c-sections and can't dilate so a office endo  biopsy is torture for me, they just can't get in.

peggy_j

Pam, yeah I had to push myself to get support, but I'm glad I did. Maybe you can try it and see how it goes--no commitment. One thing I like about my guided imagery group is that while we do have a short check-in at the beginning, we're there for the guided imagery, which is awesome. I always get a fantastic night's sleep on the nights I go. In my case, I have to drive 1/2 hr each way, plus the meeting is 1.5 hr, so it's a bit of time  but a net positive the 1-2x I go each month. And when I really get stressed out, I feel better knowing that I have my tribe I can go to, if needed. (I hate to say this, but as supportive as my family/friends are, there are times when they just don't understand and I need to be around other people who really understand what I'm going through). Maybe give something like that a try? Good luck!

LivingLifeNow

Peggy,

Thanks for the extra encouragement. I like the sounds of getting a "fantastic night's sleep." I can certainly use that! I've never heard of guided imagery, but will google it for my area and see what is available. It sounds wonderful.

BYW, I just finished watching Apollo 13. My level of anxiety for those astronauts was as high as my personal anxiety at times. Maybe I'm just a high anxiety kind of gal!

 Pam

oceangirl654

Tamoxifen does give you anxiety. They gave it to rhesus monkeys in an experiment and the ones on tamoxifen showed anxiety. I definitely feel great anxiety since being on tamoxifen, and I'm fearful of everything. It also has to do with having had cancer and having all these uterine things checked constantly. It is miserable and I can't wait for when tamoxifen is over with in two years. Take care xx