Stage 1 Ladies on Tamox Only

chefmb

Hi There. Happy to find this post. I was dx March, 2010 with 6 mm IDC in the right breast. Stage 1A, Grade 2. Estrogen+Prog positive, HER2 negative. Oncotype score 11. No chemo, 33 radiation treatments. Been on Tamox for 1 year. At first the only SE's were hot flashes and leg cramps (calf) in middle of night. Flashes went away for the most part, cramps still bother me but I take Magnesium which seems to help. I am 44 (43 at DX) and pre-menopausal. However, I stopped getting my period 3.5 mo ago and around the same time had a crazy pain in my lower left abdomen and found out I had a 7 cm. ovarian cyst which hasn't resolved as I haven't gotten my period and it is just hanging out there. I haven't had another attack from it, however. Had another trans vag and abdominal sono with the big guy over at NYU who wrote books on the stuff and he swears it is benign and told me to wait 6 mo and have another sono. Gyno surgeon at NYU agrees but my gynocologist wanted to remove the cyst (and probably the ovary) immediately. I am waiting. In the meantime, I am beyond bloated, crazy new belly fat. Have gained 6 lbs. since Jan. Very upsetting. I realize 6 lbs doesn't sound like a lot but I already needed to lose 6-10 so now am desperate to lose 15. Feels terrible, clothes tight, legs rub together in summer (yuck- have to wear bike shorts under my dresses) and am pretty depressed about the whole thing esp. because I have been working out more (PT 1 x wk, yoga 1 x wk plus walking). Am going to increase the PT to 2xwk and try to fit in some cardio and see if anything changes. Any other gals who were pre-menopausal all of a sudden stop menstruating with Tamox? My oncologist makes me feel like a crazy person for worrying about this stuff. She tells me, just eat less and work out more, get a trainer, you can afford it. Pisses me off. Oh yeah, my estrogen (estridol) is also high- was 1000 now like 800. CA127 was high but now ok (was 40 now 25) and I am a good metabolizer of Tamox. UGH!!!! This sucks!!!!! 4 more years. Then I will really be in menopause at 48 and will probably be even fatter. I used to think everyone who said they couldn't lose weight were exaggerating but now I understand.

Rennasus

chefmb: Listen to your gut and your gyn: Get the cyst out! IMHO, once you have been diagnosed with cancer, there is no more waiting game. Odd things need to be checked out immediately. You will feel better once you know what it is. As we all know, the waiting is THE PITS! Although i am a bit older than you (now 53), I was peri-menopausal when diagnosed at age 52 and I was still getting my period. I didn't start Tamox until the end of march... but, haven't had my period since new Year's Eve! Good luck with your docs and please keep us posted!!

Panmars

chefmb, I agree with Rennasus. If your gyn says take it out, I'd do it. I have been on tamox for 5 months, and my periods have become a guessing game ( I am 43 ).I was regular until I started tamox. I also recently developed ovarian cysts, one on each side. They aren't very big, about 2 cm, but the left one ruptured 2 weeks ago, and I still have a fair amount of pain and discomfort from it. I am having a recheck ultrasound in 6 weeks, see what's going in there. Oh the joys of tamoxifen! I will consider having my ovaries removed if the cysts become a chronic problem. Good luck to you!

PLJ

Edited to add: Tamoxifen has a half life of 5-7 days. It takes 25-35 days for it to be totally out of your system, although one of its main metabolites has a half life of 14 days so it takes about 70-98 days for that one to be gone once plasma levels have reached steady-state (after about 3 months daily ingestion).

Sherryc

Panmars-I get my coconut oil at a health food store, but they sell it at Whole Foods and Trader Joes as well.  Just make sure you get the organic cold press.  I think my brand is Nutiva???  You want it in the most virgin compound and it will smell like coconut.  I use it to cook with as well. Melts very easily so once you get it on your hands it is melting.  I just rub my hands together and then spread it on.  I primarily use it on my face and I have not had any problems with it breaking me out.

Panmars

Thanks Sherryc, I will be getting some.

PLJ, wow, what an ordeal for you! Yikes! Glad you are now doing well.  

HelenaJ

Hi ladies, have been off these boards for a while now as things were going so well.  2.5 years on Tamoxifen (Oncotype score 6) and all was going well.  I am an extensive metaboliser and had virtually no side effects - then last year had an ovarian cyst and had the ovary removed and now have endometrial thickening and my periods are all over the place and my moods are swinging around and around.  I have also gained weight around my belly - frustrating as I am a runner 7kms every 2nd day and slim elsewhere on my body!!!  My Oncologist has agreed I take a 6 week break to see if I am in perimenopause - had a blood test to measure my estrogen levels and I am still producing lots of estrogen.  So I am tossing up whether to stop altogether or go back on it or reduce my dosage. Lots to think about.  Hugs. 

Rennasus

PLJ welcome and thanks for sharing, you have had a rough ride!

Helena, you def. have lots to think about. Can you get a second oncology opinion? Seems warranted to me. I'd get one before I stopped the Tamox. Good luck and keep us posted with what you decide!

Panmars and Sherry, I too have used the coconut oil for dry skin on Tamox. Thankfully that SE has resolved itself, so the coconut oil is back in the pantry! 

Sherryc

Since I have been using coconut oil on my face it has become much softer and I really don't have dry skin on my face.  I just like the way it makes my skin feel

Helena you do have lots to think about.  I would def get a second opinion as well.  But From what I have heard the first two years are the most important.

NoMoreHL

Hi, Ladies!  Question: Why coconut oil? Is that what's recommended by doctors?

Sherryc

Some other ladies recommended it on another thread so I tried it and love it.  Also Dr Oz did a segment on it and it is suppose to be good oil for you to eat and also stated it was good for your skin.

HelenaJ

Thanx ladies for your concern.  I am seeing my Onc again on 8 September, after my little tamoxivacation to discuss my issues.  I was so hoping it was perimenopause and to blame everything on that.    I remember being so grateful not having to do chemo and having tamoxifen instead to protect me.  I am just feeling so fantastic now, lots of energy and "happy" and "nice".  Haven't felt like that for the last 6 months.  Sigh.  Perhaps my little break will trick my body enough that I can have the next 2.5 years without issues. Hugs.

Panmars

I know this thread has languished a little, but I have a question regarding the tami. I have developed acute inflammatory arthritis in my fingers. It has developed over just 4 weeks. Swollen painful joints on a few fingers and spreading to the others with alarming speed. Getting hard to open jars, doors, etc. without pain. I am seeing a rheumatologist next week, but was wondering if anyone else has experienced this. If it's not from the tami, then I have no idea what it could be. It's not osteoarthritis, because it's come on too fast. It's some kind of reactive response to something. I admit I am a bit scared. I hope it's nothing that will become a chronic problem. I guess I'll know soon enough.

Sherryc

Panmars I developed arthritis in my left hip and arthritis does not run in my family.  I am seeing a pain dr because of nerve damage from rads.  He tells me it is from the rads.  He said that when we get breast radiation that they cannot miss our bones.  Rads changes the moleculare structure of your bone marrow which circulates in our bodies.  In some that means arthritis sets in in other places in our body that was not radiaited.  I asked my MO about the arthritis being from rads or tammi and he said it is hard to say but it could be either one.  My MO did put me on liquid glucosome chondroitin with msm.  I take 2 tablespoons twice a day.  My pain dr put me on Celebrex 200mg twice a day.  I am finally feeling relief.  My MO would like to see me cut down on the Celebrex because I have unerlying gastritis problems which the tammi aggrivated when I first got on it.  But I told him I'll take my chances I was tired of hurting.

Kate40

So glad to find this group!

I was diagnosed in Nov 2017 with Invasive Ductal Carcinoma,Grade 1,Er 95%,Pr 90%,ki67 5%,negative Sentinel Node,no lymphatic or vascular invasion found.Tumor size 1.6cms.

Did a lumpectomy,with a very fast recovery(the next day I was out of the hospital),then rads and now on tamoxifen since then.

Just because I didn't do chemo it doesn't mean it hasn't been a hard road for me emotionally.

Only now,almost 3 years later I am starting to feel better and rescuing my dreams.I had a really hard time,as I believe you did.I still feel fear everyday,but I am starting to deal with it better

I was 40 years old at that time and now I would really love to become a mom.

My oncologist is ok with that,and I have been asking for second and third opinions over that,including a specialist that is rulling the Posiitve Study,and the opinion was to go ahead,but I am still paralised with fear.

Happy to have found this group.

Sorry my bad English