Let's Talk Hormonal Therapy

I’ve been on tamoxifen for a few months now with few side effects.  I asked for a second opinion about my case since the doctors on PEI refused to order me the oncotype dx test.  The second opinion doctor ordered the oncotype dx for me and my score was 24.  Just under the 25 cut off for chemo.  She recommends that I start monthly injections of Zoladex to put me into early menopause to further reduce my risk of recurrence.  I’m 42.  Anyone with experience with Zoladex?  I asked my PEI onco about it and he said it doesn’t affect your hormones... that it keeps cancer from going to your bones.  .???

Kellbella‍ 

Second opinions are a great way to get more information and feel confident in your treatment decisions. Were you able to have a conversation with your Oncologist about the recommendation from the second opinion? 

Kimmy0222‍, Hollykins‍ have shared experience with Zoladex. Here is a link to discussions about the drug: https://cancerconnection.ca/search?query=Zoladex

You can also contact our Cancer Information Helpline for help finding more information about the drug and what it is used for. You can contact them by calling 1-888-939-3333. 

How are you feeling about this treatment change?

Lacey

Hi, I just signed up on this forum and hope I'm in the right place and using it correctly?!  I have questions on hormone therapy and hope someone here can provide some insight as it looks like there is a LOT of great dialogue and experience!  I was diagnosed with breast cancer about a year ago, had surgery and radiation and then was put on tamoxifen and after about 6 months I had to come off as it was drastically affecting my life, relationships, etc.  I could handle the physical (never ending hot flashes, etc.) but what it was doing to my emotions was over the top and affecting home and work.  As soon as I stopped my life settled 100% back to normal.  The doctor and I discussed another option so I started Letrozol (probably not spelling that right) as it was supposed to have fewer emotional side effects but more physical.  I'm 3 months into this one and the physical side effects are again over the top (gained 25 lbs while eating the healthiest I've ever eaten), very tired, bone aches to the point of pain with every step.  So all that to say I'm considering stopping hormone treatment all together as I'm not sure the reduction in quality of life is worth it?  Has anyone else had drastic side effects and what did you do about it or what other options do I have?  My cancer was caught in a very early stage and hadn't spread so not sure if that plays into taking the hormone treatment for a long period of time as well?  Thanks for any information!!

SAH‍  Welcome! What a great first post. There are many discussions under Forums,  Treatments and side effects about different hormone treatments.  My experience was the opposite of yours. I am retired, was given Letrozole first. I experienced joint pain and over 4 months slid into a debilitating depression.  I was then offered tamoxifen after drying out for a month. So far tamoxifen is acceptable.  One thing that was explained to me was the survival odds and the chances of cancer reoccurring.  In my case the added protection of hormone therapy is a low percentage.  I had already decided that if tamoxifen didn't work for me, I would abandon hormone therapy based on my oncologist's comments regarding the extra protection it would give me.
Are you able to find out what the benefits of hormone therapy are for you?  Can you have this discussion with your medical team?  It would be best to know the facts for you specifically so you can make an informed decision. What are the numbers? I am so glad you found us here.

Wow, thanks for the response - who knew having folks of like situation would feel so comforting.  My chances of re occurrence are apparently low (less than 10%) as they caught everything early so that is why I'm struggling so much and I don't think I'd ever forgive myself if it reoccurred and I hadn't done the full scheme of treatment.  However, the one question I can't seem to get anyone to answer is...why 5 years?  Why not 1 or 2 or???  Does more drugs for longer decrease your chance of re occurrence??  I tell folks who ask...the surgery and radiation was the easy part - the hormone treatments so much worse for me!

SAH‍  Can I make a wild guess? Maybe 5 years to kill any lingering nastiness in your body? I know others are on hormone therapy for 7 or 10 years. So once again gather all your information and questions and have another chat with your team to find out what will be best for you!

Welcome SAH‍ . I am glad you reached out on this topic. Absolutely a great place to start.
I wanted  to give you a link to cancer.ca hormonal therapy here : https://www.cancer.ca/en/cancer-information/cancer-type/breast/treatment/hormonal-therapy/?region=on 
You will find at the bottom of the page, a link to questions to ask you r oncologist about the therapy and you can add your own questions to the list to have that important discussion with them. I tried all of them myself. I started on Tamoxifen as I was pre-menopausal at diagnosis. I was moved to Letrozole when I became post menopausal, when that didn't fly with me , we tried Arimadex and then settled on Aromasin ( exemestane ). So there are other options but that can differ from person to person.
As with the percentage of under 10 % - where that is low for one person it can be too high for another. So in the end, as mentioned, ask the questions you need answered and proceed with as much knowledge as possible and with a decision that will sit well with you and allow quality of life.
Do you have an upcoming appointment with your oncologist.
Let us know how you make out
Lianne
 

Hi everyone! I have just completed 20 sessions of radiation, 12 weeks of Paclitaxel, continuing Herceptin tx, lumpectomy left side in January...oncologist appt on my last rad treatment, informing me I need hormone therapy as well. I haven't been well informed by my GP up to now either so that doesn't help, he told me I wouldn't need chemo or hormone therapy back when I was diagnosed. So I am overwhelmed with the thought of 5 years taking Tamoxifen which worries me as when I started perimenopause a few years ago, I chose HRT since the hot flashes and night sweats were so bad I wasn't sleeping. So I'm hoping and praying I will have minimal effects. Has anyone had any trouble with blood clots or concerns of uterine cancer? How about mood swings? I don't want to have to take antidepressants as well!! Thanks in advance for any support!! 

orchid*lover*‍ I had a similar diagnosis, surgery and radiation but not chemo.
I was menopausal and had been taking HRT as well for several years because of hot flashes. I immediately went off this medication and started back to the hot flashes. I now am taking anastrozol.... similar to Tamoxifen. Hot flashes are still happening but not as often as I had feared. They are very intense though and it's like someone had turned on a tap and I sweat from places I didn't know I could! 
Coffee and wine do make it worse but hey I've allowed myself these vices and put up with the hot flashes!  
I was already on an antidepressant but they switched me to Effexor because it can help with the hot flashes. I've not been a fan of medication through most of my life but I decided to accept that it will help me so I'm grateful for anything that will get me through this next 5 years.
I have tolerated the anastrozol well with some minimal side effects so far. It's just been 5 months since I started the medication but I haven't had any bad side effects that I can't handle. Mostly I am dealing with joint stiffness and hot flashes.
My experience is to just let the hot flash pass. I'll sit down, wipe my brow and anything else that's dripping and wait it out. It does force me to stop and regroup and ponder the fact that dealing with the hot flashes is a small price to pay for the life that I can now live because the cancer was found and treated....
I'm off work right now which really helps me to not stress about the sleep issues and I can wear very cool clothes....I prefer cotton as I hate the feeling of synthetic fabrics which I think keep me hotter!
I've heard that acupuncture can help with hot flashes but I haven't tried that yet.....
I'll just encourage you to take one small step at a time and do what the oncologists suggest. Your Family doctor isn't trained to deal with cancer specificly so I would take their comments with a grain of salt....I assume that they are well meaning comments. My family doctor is my best advocate but we both know that there are specialists in my team who I will turn to when it comes to my cancer care.

All the best to you on your next steps. 
J

Hi orchid*lover*‍
Congratulations on getting through your treatments! 
Though I don't take any hormonal therapy treatments myself (I was triple negative), your note about your GP struck a cord within me. 
I learned that my GP knows very little about breast cancer.   She (yes she is a woman!) even said as much to me when I asked her a question one day about breast cancer a few months after my diagnosis. 
If your GP is like mine, they may know lots of things about common ailments, but it's best to leave oncology things to the oncologists. 

There are many women, and even a few men on this site, who have experience with tamoxifen.   

Minus2‍ Runner Girl‍ Jerome111‍ and cancertakesflight‍  - do you have anything to add? 
 

Hi orchid*lover*‍ , 
Thanks ashcon‍ for the tag,

I have been on Tamoxifen for almost 2 years now.  In December I am to be switched to Anastrozole.  I have experienced terrible lower body pain with Tamoxifen as well as wicked hot flashes and night sweats.  I've read that the hot flashes/night sweats are an indication that the Tamoxifen is doing its job so I am grateful to experience them, but I don't have to like them.  I receive once monthly acupuncture which completely relieves the lower body pain (I never would have believed it if I hadn't experienced it).  While the Covid shut down was on and I could not get my acupuncture I grew steadily more painful, to the point that walking was horrific and going for a run became a real torture session.  After 1 treatment when things opened up I was again pain free.  The acupuncture also helps lessen the severity of my hot flashes and night sweats.  I cannot say enough good things about my acupuncture experience.  It makes this whole hormonal therapy completely tolerable for me.

Runner Girl

Runner Girl‍ ashcon‍ IamJay‍ Thank you all so much for the helpful tips and words, I hope I don’t sound whiny or ungrateful for the treatment of tamoxifen as I realize without it, I have a high chance of cancer returning...I was feeling overwhelmed I suppose because of previous experience with perimenopause and my quality of life ie. sleep, was affected. My oncologist called me today to reassure me she and her team will be very supportive through this part...i think since my GP isn’t very caring, that made me worried I’d be alone with my concerns...I also want to get back into running as I had until last year. I will definitely look into acupuncture treatment if joint pain and hot flashes become unbearable. I don’t have a benefit plan so I would imagine that’s not covered by BC medical if it’s for cancer therapy? I am a dental hygienist and I need to be alert and rested with my work, no shaky hands! 😊

SAH‍ I'm glad that you have so many woman who can share their experiences with you. It certainly demonstrates the wide range of reactions there are to medication.

I took Tamoxifen for about 7 years. I continued taking it no matter what. I had blood clots. I had a thickened uterine lining. I had polyps removed. I had my uterine lining scraped multiple times. Even though I hadnt had a period in years my bloodwork never indicated that i was in menopause. Eventually I had my ovaries and tubes removed. My doctor was trying to avoid a hysterectomy.  Twice a year I had a test done to check my uterine lining. Eventually when I suddenly started to spot mu doctor did another endometrial scraping and sent it to pathology. There were precancerous cells so I finally had my hysterectomy. I talked to my oncologist about taking another medication but the first one I was offered had the potential for blood clots. I decided to forgo any more medication and my oncologist didn't figure it would be a large help to me at that point. She totally understood if I didnt want to take anything any more. Seven years was a long time. My initial diagnosis was in 2011 and my hysterectomy was in February of this year.

cancertakesflight 

Anyone have experience with this combination:
Triptorelin, Zometa, Tamoxifen 

I was premenopausal when I started Triptorelin along with chemo, which quickly put me into no periods (yay!) and hot flashes etc..... Have just learned I’ll be starting the other 2 drugs shortly and wondering what to expect.

Thanks!

I am currently on Tamoxifen.  They first started me on Anastrazole.  It was a total disaster for me.  Hot flashes and personality changes.  To the point that my husband of 42 years who is such a kind soul said, "You are not a very nice person to be around right now."  Off the Anastrazole and the hot flashes subsided and I got me back.  (My hairdresser also experienced the personality change). I've just been on the Tamoxifen for 4 weeks.  I get hot flashes but nothing like they were on the other.  And joint pain.  I have rheumatoid arthritis so am used to joint pain, but this pain is more widespread, affecting joints that don't normally trouble me.  Having said that, it is much better than the Anastrazole so I will stick with it.   

Hi orchid*lover*‍ 
I have been on Tamoxifen since August 2016 with manageable side effects of hot flashes and some stiffness.  I take melatonin with magnesium and keep moving to help.  Alcohol always brings on a hot flash, sigh.
I was diagnosed in May 2016 with DCIS and IDC, Stage 1a, ER+, PR+. HER2-, no lymph node involvement, and close margins on the right side, no chemo or radiation needed.  I was nervous about the Tamoxifen but I have tolerated it very well.  I was not menopausal at the age of 54, so Tamoxifen was the only hormonal treatment available to me.  
In terms of managing risks associated with Tamoxifen, I requested a pelvic ultrasound to obtain a baseline measurement of my endometrial lining.  I did have a thick endometrial lining;  my OB/GYN felt that was probably sourced in treatment for endometriosis, not only the Tamoxifen, but I had all the girlie parts removed to manage my estrogen levels and to avoid the risk of endometrial cancer.  The risk of endometrial cancer linked to Tamoxifen is about 2%.  Following the hysterectomy, I elected to stay on Tamoxifen rather than switch to an AI for several reasons:
1.  Tamoxifen has been used for about 30 -35 years; it is a well researched and documented drug in terms of long term use and effectiveness.
2.  AI's have been on the market a relatively short time and long term effects are still being researched.
3.  Tamoxifen users report fewer side effects than AI users and less severity of side effects than AI users.
4.  Once my team indicates Tamoxifen should be stopped, probably anywhere from 5-10 years after starting it, I have the option of trying an AI, so I can extend the length of my hormonal therapy, provided I tolerate the new drug well.
5.  AI's perform about 3% better than Tamoxifen in preventing a recurrence, but with the estrogen factory being shut down with the hysterectomy and oopherectomy, my team felt my risk of recurrence was about the same on either medication.  
6.  With no uterus, there was no risk of endometrial cancer, so one less thing to worry about.

I don't know if any of this helps, but as others have said, be sure to take any concerns to your oncology team.  GPs are great for many things, but your oncology team knows cancer.  The key thing is to be aware of any changes in your body.  Our job is to be aware of changes, the Dr.'s job is to decide what is suspicious.  Hope things go well and it is smooth sailing going forward for you.

Not on hormonal therapy but night sweats...I have found that wearing a thin pair of socks knocks them on the head....

Weird cure I know, but apparently there’s science behind it. Our feet are really important in temperature regulation. My night sweats have stopped - I no longer wake drenched and cold...just thought I’d share for you lovely hormone suppressing ladies xx

Lacey_adminCCS‍ good morning everyone.  So I had my second opinion and it was an interesting appointment.  The first question from the oncologist was "what do you know about your cancer, you have seen enough oncologist to understand".  Let's say the appointment didn't start off on the right foot.  My husband told her that CANCER is a scary word for us, may not be for her since she is around it all the time.  I guess she was not impressed I was asking for a second opinion. 

Once we got over this hurdle, we did have a productive conversation.  I was given a report how they arrive at the results of possible reoccurence.  In my situation, if I take the hormonal therapy, the protection increases by 1%.  I had to weigh the pros and cons, and for me the 1% is not enough to suffer all the possible side effects.  The decision as to what you want to do is up to each individual.  The oncologist provided the information, and I had to come up with what I wanted to do.  So I opted to do all my recommended yearly checks, no hormonal therapy and move on with my life and enjoy every day to the fullest.

It is unfortunate when you are proactive and are asking for a second opinion it is looked on negatively.

M...

TT53‍ 

I am glad you got your second opinion and came to the decision that works for you. It is important to have the information needed to make informed decisions.

Kudos to you for advocating for yourself. You are the most important member of your medical team.

Lianne

TT53‍

I'm sorry that things got off on the wrong foot. Gathering information and having all the facts is so important and a strength. Good job advocating for yourself. 

I'm glad you still got what you were looking for and could make the best decision for you! 

I really like what your husband said. Cancer is a scary word. Good for him to reset the tone of the conversation. 

Lacey

Thank you thank you so much Minus2‍ ! I have a great oncology team but yes I know what you’re saying about GP’s. I will ask about if hysterectomy would be a good idea...I know my oncologist recommended tamoxifen for 2 years then AI for 3..will ha e to see how it goes ...thanks  again for your words!