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Afraid to start Tamoxifen

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

I went through the bilateral/recon/scans and was able to avoid chemo/rad but now faced w/Tamoxifen. I'm 63 and a small person. Have walked 4 mi daily for 35 yrs and exercised at a gym forever. Never overweight and have been healthy all my life, until bc diagnosed at annual mammo in Apr 12. The side effects given are overwhelming, and I don't want to gain weight. No telling what problems it would lead to at my age. The Onco DR says I'll see this aggressive cancer again sooner rather than later if I don't take the Tamox. It was caught early, and I felt hopeful, until the Onco visits began. I was awake until 3am wrestling w/my thoughts. It has become all consuming. Is there anyone who chose to say no to treatment in my situation, or who had good results on the med?

Rague
Posts: 3257
Joined: Aug 2009

I was 63 when DX'd IBC (Stage III, ER+PR-, HER2-) in 8/2009. Started Femara/letrozole in 2/10 a week after starting rads. (Had 4 A/C, mast., 12 Taxol before starting 25 rads a week after last Taxol.) I, too, was very healthy, active and fit all my life - no history of any form of cancer in family for at least 4 generations.

SE's listed do not mean that anyone will experience any of them but they have been seen singlularly or in conjunction in some. I've had no SE's from Femara/letozole though some/many do. I have not gained any weight in the 2 1/2 yrs I've been on it - in fact I've lost some (know I'm in for a lecture when I see Dr.T later this month).

I was told by all my Drs when I hit a year post DX that they didn't expect me to still be 'here' - that was 2 yrs ago and I'm still NED. They don't have all the answers - nor do we. Live each day to it's most. Only you can know what is right for you - I did 'everything' I could and at this time I don't regret doing any of it.

Not sure if any of that is thoughts/comments you're asking for but are my thoughts.

Winyan - The Power Within

Susan

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Thanks Susan! You're in my same age bracket and otherwise healthy,so I loved hearing from you. No cancer of any kind on either side of my family either. Gotta wonder, huh? Linda

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Hi Lintx,

No one likes hormonal drug treatments. If it will keep you from going from the stage cancer you are now to being stage IV (no cure, just treatments for life) it might be a good insurance to purchase. You say you want to stay healthy, I can't think of a more unhealthier approach than to bypass a drug that might in time be a benefit allowing you years of living.

The side effects listed are overwhelming but it doesn't mean that every woman has them. It list them to protect the pharmaceutical company. Some women do gain weight but if you already are aware of that possibility you can certainly nip it in the bud. You seem to have a good regime of exercise, you more than likely won't gain weight.

Like all drugs Tamoxifen does have some very serious side effects such as a possibility of endometrial cancer. Some women do have it but the number is few comparing to those who never do. You won't know until you try the drug to see what side effects (if any) you will have.

Taking Tamoxifen won't guarantee that your cancer won't come back but it does give you the odds that it might not.

I would always want to be on the side that gives me the best options than none at all.

Wishing you the best with this decision,

Doris

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Thanks, Doris. I appreciate your reply. I'm a stage 1 and know I have to give it a whirl. Linda

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

It is scary at each stage of treatment. I was the same way with the anastrazole. It took a couple of days to work up the courage to take the stupid pill. That was over a year ago. I had mild side effects that are mostly gone now. You could always try it and if you even have side effects, cross that bridge when you get to it. You should give yourself the best chance at staying cancer free.
Cindy

jendrey's picture
jendrey
Posts: 377
Joined: Sep 2009

If anyone would've told me 2 years ago that I'd be gaining 45 lbs I would've said they were crazy and that it would never happen. But, it did. All of my life I could eat anything and everything and still be 103 lbs, that is before being treated for breast cancer. Before experiencing chemically induced menopause. I cannot imagine taking something that would among other things cause me to gain even more weight!

But that's not why I elected not to take tamoxifen. In my particular case I just don't feel the trade-off in general is worth it. Not with the doctor I have currently anyway. Of course, every situation is different and only you can decide if the trade-off is worth it to you personally. =)

You could always give it a trial run and then decide if it's truly for you or not. At least, that way you know what you're up against.

(((Hugs)))

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

I'm thinking a trial run, as you suggested. Thanks, Linda

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Yes, it is scary. I hadn't considered the SE's may subside over time, if they even present themselves. Thanks for your input. Linda

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Linda,
I was on Femara for several months and had terrible side effects. I finally said, 'no thanks'. About 8 months later my new oncologist talked me into giving Tamoxifen a try. I agreed to try it, but wouldn't promise to stay on it. The only SE I've experienced is trouble sleeping through the night. I tend to wake up in the middle of the night and lie awake awhile before falling back to sleep. No weight gain. No other SEs that I've noticed. I agree that its worth a shot. You can always decide to discontinue. Had my choice been limited to Femara, I would have opted for nothing.
Best wishes,
Chickadee

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Oh, good...that definitely helps. I'm going to call the DR tomorrow and get things going. I looked at the ceiling last night for hours myself w/out taking any meds! The whole ordeal is such a process.

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Oh,good. I've decided to call the DR tomorrow and get things started. I also looked up at the ceiling last night w/o taking any meds. This whole ordeal is a process. This is a crazy site. First it wouldn't let me post, so I did it again and now both are there!

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I was scared of taking tamox too and still haven't and probably never will. I got the pills here at home, but, doubt I will ever take one. I've been doing great without it, and, pray I continue. So many with recurrences took the hormone therapy and it didn't work and there is just a lot that I don't like about tamox.

You do what is best for you, and, only you.

Hugs, Kylez

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

I know what you're saying, and I've said the exact same. There is so much pressure to try it, so I will do that at the very least. I'm more than afraid of it. I've never been a medicine friendly person! They all have side effects. A friend just went through horrible chemo for 5 mos and thinks I'm crazy for not wanting to swallow a simple pill for 5 yrs. She wished for the option. My Onco didn't want to follow me, unless I agreed to try the therapy. I reluctantly said I would. If I see or feel anything crazy, I'll stop. Several women posting in reply have had good experiences. I hope to be one of them. If not, I'll be jumping over to your team, quickly!! Then I'll have to find a new DR. Thanks for your input. Hugs to you! Linda

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I wish you the best of luck Linda on tamox and pray you have no side effects. It is always our choice whether we take it or not. I am just one of the ones that chose not to.

Stay in touch and keep us updated,

Kylez

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

You're right. I ordered the med, and it is in the mail to me. We shall see. Seems everyone has doubts, but it helps to hear from other women in the same boat. Thanks, Linda

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

In my opinion, the side effects of cancer are much, much worse!

I believe a large part of why I have survived 25 years with Stage 3 (now 4) cancer is that I have been incredibly compliant. There are usually some adverse effects involved with any drug and they can mostly be managed. I did gain a little weight with tamoxifen (which I quickly lost when I stopped it after my course). I also gained an amazingly long remission (22 years) after initially (back in 1987) being told that my prospects with Stage 3 cancer were not good.

Being compliant and being lucky enough to have a tumor responsive to my treatment have helped me extend my life much, much longer than I ever dreamed possible.

As the Nike ad says, "just do it!" My opinion as a longterm survivor.

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

I will!

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

I am so happy! You're two word response has meant more to me than you will ever know. Please keep fighting. You are so worth it!

sdukowitz
Posts: 250
Joined: Nov 2011

I haven't had that many side efects since I started tamoxifin last December. I am 56 and also walk and exercise daily... A few joint pains but the hot flashes are the tings I have learned to put up with... I take it in the evening as Id rather have the hot flashes at night at home than at work during the day... I think the recurrance rate maybe being lowered is worth the few side effects .... my dr said to at least try it, you can always stop it or switch meds if the side effects are not bearable Sue D .... best wishes!

roseann4
Posts: 994
Joined: Sep 2009

I was 58 when I was diagnosed. I'm now 61. I was told by my oncologist that Arimidex was suggested for post menapausal women. Only 10 percent of the women on this drug have weight gain. It does have many side effects but have have no obvious ones. One of the potential side effects is bone loss but mine has significantly increased because I started daily exercise. Just curious.

I was very concerned about starting Arimidex because so many people had bad side effects like joint pain, I'm glad I didn't let fear stop me because I feel fine. Hugs.

Roseann

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Exercise has always been a part of me. I love everything from the social aspect to the personal benefits. Thanks for your thoughts. I love hearing success stories. I'm making the call today for the med!

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

All of these comments have given me the go ahead to at least try it. Thanks so much!

disneyfan2008
Posts: 5259
Joined: Oct 2010

I am now 53 yrs old just started MY final (5th) year of tamoxifen this week. I have had no side effects other then "thickening of uterus" (common) & total hysterectomy.

Denise

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

I'm loving this kind of reply because I've been so back and forth on the issue. I did order the med this morning and so thankful for your input. Linda

NJMom10
Posts: 176
Joined: Oct 2010

Hi Linda,
Thanks to the 'experienced' ladies on this board, it sounds like you have the info you need to make this decision. I too, struggled with the Tamoxifen issue. Ordered the drug, then let it sit for 2 weeks before I started taking it. I was more worried about the risk of uterine cancer than anything else, because I was already experiencing pre-menopause SEs anyway. I took the drug for a year, then had my oncologist switch me to anastrozole, the generic of Arimidex, as I was fully menopausal then and this was one of the drugs of choice for my that stage of life. (I am 55 now, btw.)

At my oncologists suggestion, before I started Tamoxifen, I had a check up with my gynecologist and an ultrasound to establish a baseline by which to watch for the 'thickening uterus' and possible cancer there. I had a second one done a year later and there was no change. My gynecologist will continue to monitor this.

When I switched to Anastrozole, I experienced an increase in hot flashes at first, but those have lessened. I do daily exercise also, which helps lessen hot flashes in general.

Let us know how you make out. Best of luck to you. Barbara

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

It was so sweet of you to take the time to write me. Thanks so much. I do value everyone's suggestions. Who knew we'd ever be here in the first place, huh? Life!!!

Attygirl's picture
Attygirl
Posts: 121
Joined: Jun 2012

and was diagnosed in April with small stage 1 IDC tumor which is hormone sensitive. I have had a lumpectomy and just finished 36 rads, no chemo. Tamoxifen is next up and I seem to have a mental block about it. Keep forgetting for schedule appt with medical onc and gynecologist for uterus baseline. Like you, I have lost sleep worrying about SEs, so these responses were very helpful. I want to do all that I can to reduce my chances of recurrence, so I am going to try it and see how I do...if I can just remember to call the doctor!
Best wishes for a successful run with it!

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Mine is in the mail to me. So afraid I'll stare at the bottle for awhile! One person says she takes hers in the evening to avoid hot flashes during the day. I think I'll follow her lead. Lots of great advice on this site. Good luck to you, as well.

Attygirl's picture
Attygirl
Posts: 121
Joined: Jun 2012

Will see MO on Monday morning and have baseline uterine ultrasound same afternoon. I, too, plan to take it at night. Be well!

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

I sent a reply and don't see it here. I have bad luck w/this site. Anyway, so glad you made the appt. Life is busy! I swallowed the first pill last night and am still here:) Probably takes a few wks for any SE's. We must give it a try. Take care, Linda

Attygirl's picture
Attygirl
Posts: 121
Joined: Jun 2012

...in this together!

Faith1122
Posts: 46
Joined: May 2012

I also was diagnosed with minimal stage 1 & decided on having a bilateral mastectomy. I also did not have to have chemo or rads but the Dr. Recommended Tamoxifen & I have been terrified to take it for fear of it making me emotional & gain weight. I finally filled the script 5 weeks ago after my implant exchange. My oncologist told me to try it & if I decided not to take it he would not fight me on it but if I was his daughter/wife or mother he would highly recommend me taking it as a precaution. I have 2 yound kids & it is already difficult for them to see their mom sick & in & out of hospitals having all of these surgeries. I am already struggling emotionally from having cancer & losing my breasts, I don't need a pill making me feel these emotions any more. At first I was really tired & my skin has been breaking out really bad but is finally getting a little better. Have been on the verge of tears the past 2 weeks but my 7 year old daughter has been really giving me a hard time which is just as upsetting as the cancer. I figure I have to tough it out for at least 5 months. Good luck with whatever you decide!

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

You must be very young. I'm so sorry for what you've gone through. I truly know because I did it, too. That was some surgery, and I had immediate reconstruction, not implants. Plus, I had eight wks of itchy hives because I was given something w/penicillin, and I'm allergic. They checked my arm band 1,000 times and still gave it to me. Made recovery more difficult. I just had revision surgery, which was nothing in comparison. I still go through the teary stages, too. It seems like the medicine side effects are different for everyone, and I have to figure out how to be the glass half full person! It has been easier to be the half empty one since April when I first heard the news after my annual mammogram. I swear to you that I do not even remember driving home from the appt. There are so many women on here with wonderful stories and advice for us. We have to pick ourselves up when the low times hit us. I would give you a hug if I could! Take care.

Frankie Shannon
Posts: 457
Joined: Oct 2011

Hi i have been on Tamoxifen for 2 years and Gabapentin for the hot flashes and to help me sleep at night,i have only gained 17 pounds and still have hot flashes but they are minimal i am 69 years old have a bit of fatigue but thats the side affect of both drugs so is the weight gain.I have no other side affects.You can always try it and if you can't handle it then you can always stop.Every one reacts different to drugs so that is up to you.I am sure there are some that refuse to take it.Hope this helps on making up your mind.
Hugs Frankie

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

You're right to say that we all react differently to drugs. I'm praying for minimal SE's. Thanks so much for sharing with all of us. Linda

sdukowitz
Posts: 250
Joined: Nov 2011

Linda,
It is so kind of you to post replies to each individual you heard from ... good luck with the tamoxifin and every time I have a hot flash time I am just so glad it is working and think of it as a mild side effect now.... After a month or so, the daytime hot flashes got better and for night time I take my little fan with me when i travel to hotels or anywhere otherwise i keep it by my bedside .... wearing cotton clothing helps as well ..... sometimes I wear a tank top under clothing that soaks up any sweat and keeps your other clothing fresh ..... can always take off the sweaty tank top if you need to....... good luck! Sue D

Mittensandmedwick
Posts: 85
Joined: Jul 2012

Wow it is so awesome to see all the support from everyone. Unfortunately we all have to be here, but we are not alone. I have 16 more rads treatment, have done 18. Then I will be taking arimidex. I do not know anything about it, so I am open to hear people's suggestions

Thanks
Patricia

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

I'm sure you'll hear as much info as you can handle! I feel better listening to other women in my shoes rather than DR's most times. I will always think that exercise and eating right should play a huge role. Go up to Sue's advice on hot flashes. She takes her med at night to avoid daytime flashes. I've already decided to do the same. I wish I could sit down and have a face to face conversation w/these women. Everyone is so caring and kind. Linda

Lynn Smith
Posts: 1265
Joined: Mar 2011

I was 62 when dx in 2009.I had a 2 lumpectomies(the cancer and one benign(found when they were prepping me).I was dx as being Stage 0 DCIS.Clear margins.Tumor was 1/2 centimeter.I was told I didn't need chemo or radiation but very important to take tamox.I'm like you.I pondered.I had the pills a couple months.Saw my surgeon and told him my worries.He said it helps keep the cancer from possibly spreading to other areas. Not long after that I had my husband take me for a ride while I took the pill all along worrying about a instant side effect(like my heart racing which I've had taking other meds). It will be 3 years in Dec for me.I have missed more than I want.I just Pray it works.

I've also felt comfortable having a Total Hysteroctomy since tamox can cause some female problems.

I'm like you small and very active.I do alot of my walking just around the house.I seldom sit down. On the go all the time.

One thing that seems to bother me is food doesn't have a good taste.I think that can happen taking tamox.My husband thinks I forget more but I always have something to do and on the go.I go in so many different directions. Still though at 65 I feel pretty good except for the BC and that worry.Also my sister was just dx the same age as me(62) but hers is Stage 2 and the doctor thinks it may have spread.Will know more later after more tests.

I suggest try it.You have no idea how much I was worried about it.Anytime I try new meds I feel uncomfortable when I read those side effects.

Lynn Smith

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

You sound like me in that we never stop and rarely sit down! I'm very hyper. Thanks so much for taking the time to correspond. It helps so many of us to share. I just don't like meds of any sort. I hope I can report good progress soon. Have a great day!

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

No, you are kind for replying! Look at all of the useful info you've given to us. I have a friend with one of the little fans that fits in her purse. She pulls it out all day long. She says Target sells it in the hardware section. I'll buy that before the first pill is swallowed..ha I live in hot TX, so I know about light clothing and tank tops, as well. I remember in my 40's, after my hysterectomy, how I'd open the freezer and stick my face in for a few minutes. Whatever works. Linda

sdukowitz
Posts: 250
Joined: Nov 2011

Ha ... I live in Alaska ....opposite of you .... In the winter it doesnt matter, I still need the fan or a snowbank to sit in! GOTTA LAUGH ABOUT THIS STUFF SOMETIMES! Sue D ... take care!

Monicalynn
Posts: 61
Joined: Apr 2012

Hi lintx, im 41 and was diagnosed with idc stage 1, i have had four rounds of chemo and am currently hetting herceptin. I was glad to see your post and see responses people made. I have been taking tomoxifen for two months and have had no side effects from it. I was netvous to take it but feel the benefits will be worth it. I have a seven year old girl and eight year old boy so am doing everything i can to be here for them

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Thanks for replying to me. I did start taking it on Fri night. I looked at the bottle a few days, and these responses made the decision for me. I'm so glad you're not having side effects. Hope I can say that to you in a couple months. Give those sweet children a hug for me, too! I have a precious 2 y/o grandchild. I want to be here, also. Hugs, Linda

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Hoping that you will have no side effects Linda! Let us know how you are doing on tamox.

Hugs, Lex

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

I sure will:) Hugs to you! Linda

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

:) How are you today?

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Tonight will be my 5th dose of the dreaded pill and still here!! It's a beautiful day and can't ask for more. Hope you're okay, too. Thanks for stopping by:) Linda

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

This is good news Linda and I pray it stays this way! It was a beautiful day here also. I love Fall and it has arrived! Guess it's time to put my bathing suit away. LOL

Hugs, Lex

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