Help!!!!! Need my girls!!! Don't know what to do!!!
Hey everyone,
I have not posted in so long.... I do lurk now and then, but life has gotten pretty hectic!!!! I need input from my girls.....
So, nov 13 marks 4 years since my bilateral mastectomy .... I have been on Tamox for3 1/2 years... I have no ovaries took thoughs out right after chemo!! Saw my MO yesterday and asked to be switched to Arimidex ... Reasons...... Feel really fatigued and major uterine problems!!! His theary is 5 years or even 10 on Tamox , then 5 on aremidex or femara ... Ok , I get it ... The longer he can keep me on the better chance I have to prolong my life!
However, I am 45, and post menoposal
So I feel like ithe aremidex would work better and maybe I might feel better!! I am so confused as to what to do... My gynecologist wants to biopsy me all the time as long as I remain on Tamox..
Anyone dealing with the issue of long term like 10 years on Tamox or take the 3 years and switch to an AI???? I might only get 8 years of protection instead of ten to 15!!! Sorry for the ramble... Would love some help on this one!! Oh and he did agree to switch me and said that in the next 5 years we will have more data on remaining on the AI's longer then 5 years... But, who knows!
Did not take Tamox last night and feel really clear today, is that weird?? Probebly just in my head!! HELP!!!
Love to all
Steph
Comments
-
Hi Steph, nice to ''see'' you. I am not a good adviser as I am pretty much in the same situation re hormonals. My onc wants me to switch to an AI after three years on tamox. I would not mind staying on Tamox longer, since I have only have adjusted to its SE much or less. I had my uterus removed with my ovaries, so one less worry for me. The best thing my onc would advise. So thankful. Do you consider removing yours? Hope others will come with a better knowledge, but want to offer you warm hugs.
-
Hi Steph- I'm in a similar situation. I have been on tamox for 2 years along with zoladex (ovary suppression), so my body 'thinks' I am in menopause (I'm 41). My MO just switched me to arimidex. Like you, I really wanted to prolong my years of 'safety' and asked about staying on tamox longer (I hate it too, fuzzy brain, etc.). She said the use of tamox for a few years (not necessarily 5 or 10) followed by an AI has been shown to be the best approach. She also said that we don't know what the research will say 5 years from now, so there is a chance that AI will continue beyond five years, etc. So it sounds like you are getting the same answers.
I did switch to arimidex and have been on it for about a week. I don't know about differences in side effects, but perhaps it hasn't been long enough for them to kick in?
I think that you're right, once you're in menopause, the AI is the better solution. Don't know if any of this helps, but I look forward to reading more responses! -
If you are having uterine problems, it seems to me that would be reason enough to allow you to give the AI's a try. All I can tell you is that those drugs come with their own issues. I was on Arimidex and then Aromasin for 2 years, and I had a lot of SE's: joint pain, insomnia, terrible brain fog. A year ago I switched to Tamoxifen and the insomnia and joint pain went away, and the brain fog is a little better, but not gone. If you try the AI's and they don't work for you, you can tell your onc you'll go back to Tamoxifen. My onc is saying I can stay on Tamoxifen for 10 years AFTER the time I did on AI's, so even if you only stay on AI's for 5 years, you can always go back on Tamoxifen after that. -
@faithful heart
I am surprised that your Onc has not switched you over to Arimidex. Once menopausal, whether natural or surgical, AIs (Arimidex, Femara, etc.) are the drugs of choice. Our ovaries are the biggest suppliers of estrogen in our bodies. Once they are not active/exist anymore, that influence has been eliminated. But there are other parts of our bodies that create estrogen in much smaller quantities, but produce just the same. Tamoxifen prevents the estrogen from binding to a potential cell to "feed" it. The AIs prevent the synthesis of estrogen before it occurs.
Just the fact that you are having issues with being biopsied by gyn all the time is a quality of life matter, and certainly should play a part in taking you off Tamoxifen and moving you on.
Arimidex is not without it's issues (I had arthralgia to my joints much like arthritis pain). Ended up on Celebrex once a day in order to manage. Now I am on it over 5 years and I do not take the Celebrex anymore as the arthalgia is gone...guess I got used to it, lol!
There is not enough data out there yet to tell them how long, especially in terms of the AIs as they have been around less time. This was a discussion w/my Onc in January as I was nearly 5 years. Since I was not bothered with taking it any longer, we decided to keep me on it. I am still clean at 7 years out as a Stage III, but as we all know there are no guarantees in this marathon -
-
TectonicShift, the same for me. My onc said - two years on Tamoxifen and then AI for ten years. I'm 36 years old.
-
Hey everyone, thank you so much for your input !!! It really means a lot!! I worry because as you can see my cancer was aggressive and staying on something as
Long as I can is my concern! Although I do agree that with lack of the Ovaries Arimidex would be a better choice!! Just have those kids I want to be around for!!!! You all get it!!!!
Love this site and thanks for all your caring responses!!! I am going for it, I hate change!!!!! I hope my body can handle it!!!!!
Love to all of you and big Hugs!!!!!
Steph -
Steph, If I'm still alive and disease free after two years of Tamoxifen and 10 years of an AI, then I'm going to ask to back on Tamoxifen for a couple more years. I believe it's good to keep any residual cancer cells totally confused. ha ha -
Steph,
Oh my gosh, I just went through all this with my stupid uterus! It's gotten bigger (including fibroids) and the cancer kicked me in to menopause too. I'm on Tamoxifen too. So of course I was concerned about it. That and I've been peeing like a MF at night and my GYN sent me to a urinary/gyn specialist. I have a prolapsed bladder (great), and she did a uterine biopsy just for peace of mind. NEGATIVE! But I am wondering what the down side to just having a hysterectomy would be. Anyone out there know???
Sharon -
Sharon , same here with peeing all night!!
I read today that Tamox makes you feel like you have to empty your bladder all the time! I have been off for 2 days . Starting Arimidex in 2 weeks..... My gyn won't take my uterus out! She said that I had an ooph and you just can't go taking everything out it will break down our structure!!! I would stay on Tamox if I could have it out..... Just don't want to go through all the gyno stuff all the time...do you still have ovaries???
Xo
Steph -
I was on Tamoxifen for a year and a half. Then had hysterectomy and switched to Femara. My doc mentioned something about time frame for being on Femara and I guess the look of fear convinced her to just keep me on as long as possible.
I have instructed her to lie to me if she decides to take me off. I'm fine with a placebo that I don't know is a placebo. Alternatively, if I go off the Femara she should just prescribe anti-anxiety meds for as long as possible. -
My onc started me on AI's but when I was struggling on them and wanted to quit, he had me try tamox...for different reasons if was awful for me.....and tried another AI...I'd say if you are doing well on the tamox why switch!!!! -
Steh,
Still have my ovaries. But seriously, what's the "down" side (other than more surgery, ugh) to having a hysterectomy? Is it a hormone thing? I get the idea of not wanting to be removing things willy nilly, but many women have them for other reasons and go on just fine. If the Tamoxifen is working I'd like to stay on it but sure don't need to worry about Uterine C too.
Sharon -
Going for my ooph consult this Friday. I just started Tamox yesterday - I'm pre menopausal and 43 yrs old. My mo said after I have my ovaries removed, I can switch to Femera.
The whole hormone therapy gets confusing - I have no idea how I feel yet on Tamox since it's only been 2 days - except I do feel nausea. When I have my ovaries out, I'll be switched to an AI. What's better an AI or Tamox? I thought if a woman is postmenopausal, Tamox is not recommended. What are your thoughts?
-
Sharon ( pupfoster ) I had a hysterectomy 13 years ago due to fibroid rumors. Best health decision I ever made. I have numerous friends who chose to have their uterus removed due to varied problems. 100% feel it was the smart choice. Less pain, less worry that one more thing will go wrong... -
Pupfoster, the downside to losing the uterus (regardless of whether ovaries are still there) is that it is an adjustment in sexual function. I had to do serious, uhm, PT, to regain sexual function. It can be done, so I am not saying all is lost or anything, but docs never seem to mention the sexual aspects of this surgery, which I find rather off-pissing actually. As you can imagine, with no uterus, an orgasm feels completely different. -
I have a hystero/ooph scheduled with my exchange surgery, but haven't made up my mind yet. I had great luck on tamoxifen as I had no noticeable SEs and took it before surgery so they know it was being effective. I did not know my onc would want to change me to AI two weeks following surgery. He did say it gave me 5% better outcome chances and for me that is huge because with 22 nodes I was told 40-50% chance it was coming back.
However I have strong family history of osteoporosis and arthritis. I have seen bone issues as AI SEs everywhere. It seems to be the biggest complaint. I also see several who had no cholesterol history and now they are on statins because of this. My dad had quad bypass, don't need to go there either! My bones and cholesterol are great and I would like them to stay that way!
Ahhhh, BC the gift that keeps on giving............NOT
The doctor had NO trouble telling me there would be sexual changes! Lol
I just don't want to change one problem for another and don't want to rush into something I can't reverse. I don't want to have to take meds for SE of other meds, etc....
I did ask for the surgery but they never explained the pros and cons fully. I am finding out all that stuff on my own. It was a gut reaction to want it gone and less to monitor. Felt like it is a ticking time bomb, but now I am just not sure if I am trading some peace of mind for a list of other potential problems.
I just think right now maybe I should stick with the tamoxifen, keep the girl parts I have left, and monitor closely for a little while longer. If the Tammy blocks the receptors, but my heart and bones get the protection from some estrogen, is that a bad thing?
Any thoughts???? Thanks in advance! -
Hello 4sewwhat..sorry if this is a dumb ?, but what is an exchange surgery ? I had a hyster years ago..it was a smart decision for me, I was severely anemic & had fibroid tumors -
No, Not dumb at all! Only dumb question is the one we don't ask!!!
I have tissue expanders and just finished radiation. They are going to swap the temporaries for permanent implants on December 30th.
I have no anemia problems and never had any cramps or problems with my cycles other than migraines. They did do a CA-125 and it was a little high (41). But they did a pelvic US right away and found 1 small fibroid. My understanding is estrogen feeds those too, so the chemo and other stuff would shrink it I was told. It was less than an inch. I have also had an endometrial biopsy and all was fine. Those girlie parts seem to be holding their own which is why I just don't know what to do! -
4sew, well, that's good at least that your doc was upfront about that. May I ask what he/she said would happen? -
He wasn't super specific and it was my onc not the gyn. He basically just said it could become painful, but no specifics. They have always said dryness could be an issue even with the estrogen suppression, chemo, etc... I have not found that a problem for the most part. I know sex drive is often mentioned with surgical removal of it all, but they say that with the AIs too.
At my first chemo they gave a handout about what to do and when to call. It said chemo could "affect your sex drive" it just never said how. So at my next chemo I asked about it. I asked what happened if now you just couldn't stop thinking about it. That set them back a step or two!!! -
Good info girls, keep it coming! -
4sew, lol! Dryness can be a problem both with the ooph and with AIs or tamox. That is why it can get painful. My libido has also remained fine. That is not a problem. For me it was more that the changed internal geography changed how I experienced the whole thing and it was quite weird at first. I have yet to meet a doc who seems to realize that the uterus is ALSO a sex organ and not just a baby oven. -
That's because most of the boy doctors are not having theirs cut off and rebuilt!! Or just plain removed!!! Can you imagine if too many men were told."we are going to remove the tip and put in an uncomfortable implant until we stretch it to the size you were then we will give you a more realistic permanent implant. Oh and by the way it will probably be forever numb and won't work like it did before, but hey, don't worry, we can tattoo the tip back on and make it look really pretty....."
Yeah! How fast to you think they would find a solution then? -
Get what my male gyno says to me!!!!
He tells me that I need my ovaries out and I agreed with him.. I mean I was 99 ER pos. then he says, however I must tell you that your vagina may close up in about ten years!!!!! I am like what??? Then he says but, I can give you estrogen to open it!!!! WTH, that is what we are trying to avoid here!!!! Men!!!! So I asked my BS female about it, she said no you will never take est. to unlock your vagina!!!!! We will cross that bridge if it would ever happen!!
Got a new women gyno!!! Love her!!
Oh and when he said that to me, I looked at him and said, well you know , I think I will take the ten year survival closed vagina route !!!! Whatever!!!!
Yes there are side effects!! Not that one but, there are.... We just have to weigh them.... Are they worth our peace of mind? Or not... I think that's what we need to ask ourselves when we make these really hard decisions, and they are hard there not easy to make!! Once we make them... Then we need to find our peace with them... My Gyno now will not take my uterus and it's becoming a little more clear to me now after reading all your posts!!! Great info girls!!!! Thanks!! Keep it comin!!!!! Xo -
He sounds like a nut!! Maybe he wasn't explaining well, who knows! They have a hard time with that. I am not stupid, just talk to me. Not in med school words, although I understand most of those, but I don't need baby talk either! Any why do they all say something different or the same doc change what he tells you between appointments? Really hate that one!
I do know there is a cream they can script you to keep your vagina unlocked. Haha!! I think it has estrogen, but doesn't act like we think estrogen would. It is local and minimal. Don't quote me on that though.
My onc told my gyn he was not recommending the surgery, then tells me AIs will give me better options if I do it but the SEs will probably be a lot worse. WTF??? So confusing. Hard decisions, no clear good answers, just a GIANT CRAP SHOOT! -
Thxs 4sewwhat, & all the recent posts, having a painful day with the Taxol side effects, and your posts have cracked me up... -
Holeinone ,
Hang in there sweeti!! The Taxol will be behind you before you know it!!!! It's kicking those cancer cells butts!!! Rest and listen to your body!!!! You can do this
And you will never do it again!!!! Glad us gals could make you laugh!! Laughter is healing!!!
Hugs to you!
Steph -
Well said Steph! -
4sew, I know what you mean about boy docs. As far as unlocking the old hoohah, that can be done with hoohah PT, no estrogen required.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team