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Let's Talk Hormonal Therapy

Let's Talk Hormonal Therapy

Posted by Lacey_Moderator on May 26, 2020 5:34 pm

Hormonal therapy is a treatment that adds, blocks or removes hormones to slow or stop the growth of cancer cells that need hormones to grow. Hormonal therapy is also called hormone withdrawal therapy, hormone manipulation or endocrine therapy.

Hormonal therapy may be used alone as the main treatment or with other treatments. It may be used before surgery to shrink the tumour and make it easier to remove or before radiation therapy to shrink the tumour so radiation can be given to a smaller area. Hormonal therapy may be given in addition to main treatments such as surgery, radiation therapy or chemotherapy to lower the risk that the cancer will come back

Are you currently on hormonal therapy?
What has your experience been?
What do you wish you had known before you started?

Re: Let's Talk Hormonal Therapy

Posted by Arctic Apple on May 27, 2020 11:26 am

Good morning, 
After some consideration, I started taking Tamoxifen May 7,2020 and have experienced a few side effects. The first week in the afternoons I was nauseous, that feeling lasted about 6-8 hours per day. I did get a headache a couple of different days too, I very rarely get headaches so I know this was a side effect. Those 2 side effects seem to have subsided, fingers crossed and now I’m working on finding the balance between constipation and diahrea, lol. Also I’m experiencing the immediate feeling of wanting to peel off all my clothes when a hot flash hits. I wear layers and have a fan Close by so I can cool myself down. 

Overall, it’s been about 3 weeks now, and I think everything is starting to settle a bit as my body has learned to adjust. I said I’d give this option a months try to see how severe the side effects were with me and I’m happy to say, with a little time they’ve gotten better and I feel confident I can get the last 2 things on track as well. Good thing it’s almost summer, less clothes required! 

Although I’m considered triple negative, ER 40%+, my Medical Oncologist felt I may benefit from Hormone Therapy. My cancer is a very very rare type of breast cancer, Secretory Carcinoma NRTK Fusion3, only a few hundred people in the world have this, so there aren’t any randomized studies, scientific evidence or clear recommendations to follow for treatment plans. 

I shall see how this works, although who knows if they can truly tell the benefit or not? 

Hugs Without Bugs,
Hugs Without Bugs, Arctic Apple

Re: Let's Talk Hormonal Therapy

Posted by Mkl on Jun 2, 2020 12:58 pm

I am About to start tamoxifen today, I am hoping for the best.
I had a lumpectomy in april and starting radiation on the 10th. I was diagnosed with DCIS at my age of 25...still pretty shocking and scared about the side effects, how will the future look like regards having a baby..and so on, it has been very overwhelming.
I am very glad to be here and have lots of support and opinion from all the pink sisters out there..

Re: Let's Talk Hormonal Therapy

Posted by Lacey_Moderator on Jun 3, 2020 10:14 am

Mkl‍ - How was your first tamoxifen treatment?

Here is a link to discussions about tamoxifen:https://cancerconnection.ca/search?query=tamoxifen

May I ask did you meet with a Fertility Specialist before treatment?


Re: Let's Talk Hormonal Therapy

Posted by Mkl on Jun 3, 2020 11:48 am

Hello Lacey,
thank you for the link....
my oncologist said there wont be any fertility treatment needed, and due to the covid they are not doing any fertility treatments other then if cancer patients are going through chemotherapie.... should I have any concerns?

Re: Let's Talk Hormonal Therapy

Posted by Mkl on Jun 15, 2020 12:52 pm

Hello Ladies, so on june 2nd i started tamoxifen, after 2 days my left let got swollen, so i needed a break and my oncologist suggested and ultrasound to check for blood clots, nothing there, so after waiting for my leg to get normal, I started yesterday with tamoxifen again and my left leg is swollen again... anyone has experienced this?

Re: Let's Talk Hormonal Therapy

Posted by Simi on Jun 16, 2020 5:46 am

I started on tamoxifen Jan 1 2020 , I’m 44 I don’t have many side effects , but I have been experiencing  hip and leg pains that I never had before but all my doctors are saying not common with tamoxifen and  joint and bone pains more common with AI!

Re: Let's Talk Hormonal Therapy

Posted by Runner Girl on Jun 16, 2020 8:25 am

I started Tamoxifen on December 3, 2018.  Side effects showed up mid-February,  2019, with pain in my right leg at night which stopped if I got up and walked around a bit.  I reported this to my oncologist and was sent the next day for an ultrasound to determine if I had a blood clot, I did not. I have night sweats and hot flashes that are much worse than normal.  Since I've been provided with the generic tamoxifen I find I am having much more joint and muscle pain than when I was on the brand name tamoxifen.   I've even found a study that looked at that and concluded that for some women the pain was less when they were put back on the name brand.  Unfortunately the name brand is not currently available.  I have found relief with acupuncture and have been able to get back to see my practitioner once so far since the reopening.  

Each of our bodies is different and each of us will react differently to the tamoxifen.  I would highly recommend trying acupuncture for relief of symptoms.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Let's Talk Hormonal Therapy

Posted by Barney on Jun 16, 2020 5:03 pm

Barney here. I am on a course of hormonal therapy for advanced prostate cancer that uses ADT (androgen deprivation therapy). This involves injections of Lupron at four month intervals and swallowing Zytiga (abiraterone) pills daily. The side effects that I experience are mostly minimal and much fewer than those listed in the fact sheets that accompany the medications. There is one that I have had occasionally that is not listed in the literature but it is troubling. This is dizziness. I have had it only a couple of times since starting ADT about four months ago. It lasts only for a day at a time, but it is most unpleasant. I feel that if I am not holding onto something I will fall. Fortunately I have not fallen, but that s because I have been very careful. I wonder whether any others on ADT have had this dizziness experience.....Barney.

Re: Let's Talk Hormonal Therapy

Posted by Lacey_Moderator on Jun 18, 2020 9:18 am

Hi Barney‍ 

I'm so glad you posted. 

I'm sorry to hear about the dizziness you are experiencing- that is an awful feeling. Have you reported it to your healthcare team?

Check out our prostate cancer forums here. I'd like to introduce you to Charles‍, Roy L.CBinBC‍.

Have you had any dizzy spells since you last posted?


Re: Let's Talk Hormonal Therapy

Posted by Roy L. on Jun 18, 2020 12:06 pm

Hey Barney,   Dizzyness is not something I have experienced on ADT.  I think I have every other side effect but not that one.  I have a question for you, I am diabetic and if my blood sugar gets low I do get dizzy.  ADT really messes with your blood sugar levels.  So, do you find this dizzyness happens when you havent eaten for awhile or when you are active?  Thats about all can offer except keep fighting!!

Regards,  Roy

Re: Let's Talk Hormonal Therapy

Posted by Barney on Jun 19, 2020 9:07 am

Barney here again. Thank you Roy L.‍  for the suggestion as to low blood sugar being a possible cause of dizziness. I had not thought of that, but it could be true in my case. I add hardly any sugar on anything, in an effort to keep my weight down, so I may have low blood sugar. I am due for a blood test soon, after which I will see my oncologist, so I may get an answer before long..I have not had a dizzy spell since my last post.  The only other noticeable side effect from treatment ls constant tiredness. This is a listed effect from taking Zytiga, but at least it is something I can deal with.....Cheers; Barney.

Re: Let's Talk Hormonal Therapy

Posted by Roy L. on Jun 21, 2020 5:00 pm

Glad to chat with you Barney‍. I hate there are other men out there with advanced PCa but we all need to stick together and share experiences.  Fatigue, weight gain and hot flashes are the bane of my existance right now.  Keep pushing ahead and best of health to you.


Anyone have experience with Megace?

Posted by Rumi on Jun 23, 2020 11:55 am

Hi,  I was diagnosed with Endometrial Cancer (recurrent) in Jan of 2020.   Completed 25 rounds of EB radiation plus 3 brachytherapy radiation treatments.     The oncologists are recommending I begin using Megace as an ongoing maintenance treatment.  I'm wondering what others have experienced in terms taking this treatment?      

Re: Let's Talk Hormonal Therapy

Posted by Lacey_Moderator on Jul 9, 2020 11:48 am

HI Rumi‍ 

It's nice to meet you!

Have you seen our uterine cancer discussion forum? Here is a link. Try posting your question there also! Click here and then click start new topic to write your own post.

Here are some discussions about Megace. I'd like to introduce you to Anxious33‍ and Reinne‍ who may have experience with the drug to share.

When are you suppose to start this med?



Re: Let's Talk Hormonal Therapy

Posted by Rumi on Jul 14, 2020 5:38 pm

Thank you Lacey.      I did check that link.  Wasn't quite the info I was looking for but was good to read. 
I've had the opportunity to speak with a few retired professionals re my questions around Megace, which has been helpful.   I'd still love to connect with someone who has actually taken it, however - I'll likely post something after I've met with my oncologist next week. 

Thanks again.  

Re: Let's Talk Hormonal Therapy

Posted by frozenstar on Jul 14, 2020 9:52 pm

I started Anastrazole yesterday...so far just intense hot flashes..I say..let it burn🔥

Re: Let's Talk Hormonal Therapy

Posted by Western on Jul 18, 2020 2:22 pm

“Fatigue, weight gain and hot flashes are the bane of my existance right now.  Keep pushing ahead and best of health to you.”

I hear ya Roy. My combo of Zoladex Implant (goserelin) and apo-bicalutamide have me heating the house. I tend to have significant fatigue and muscle aches as well. What is attributed to meds and what is from radiation therapy is hard (impossible) to determine.

Re: Let's Talk Hormonal Therapy

Posted by TT53 on Jul 19, 2020 10:31 am

Thank you Lacey_adminCCS‍  for choosing this topic.  I was just going to start asking questions around the hormonal therapy.  I was diagnosed with BC in June 2019, had a couple of lumpectomies and then in October a one side mastectomy.  Was put on by my original oncologist on Letrozole in September.  Didn't seem to have many side effects for the first little while, but my bone density test showed osteoperosis, My new oncologist suggested I quit the Letrozole and don't need to take anything else.  I did follow her recommendations, but am feeling uneasy of not protecting myself from estrogen as my IDC was 8/8 score for estrogen.  I have now asked to have a second opinion and have another oncologist to review my file.  I am having a hard time wrapping my head around that one oncologist says yes and the other says no.  Would like some clarity around this.
Just wondering if there are other women here that are not taking any hormonal treatments after BC.

Hugs to all,

Re: Let's Talk Hormonal Therapy

Posted by Elsie13 on Jul 20, 2020 9:42 pm

Hi TT53‍ , Have you been looking around cancer.ca?   Myself, I don't know about this topic, but these articles seems to have a lot of information. 



  I think a second opinion is very important in your case. You need to be comfortable with your treatments (or non-treatments) !
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Let's Talk Hormonal Therapy

Posted by TT53 on Jul 20, 2020 10:47 pm

Elsie13‍  Thank you.  I have seen some of those, but I will take another read thru.

Re: Let's Talk Hormonal Therapy

Posted by Traveler on Jul 28, 2020 9:36 am

I have just had my third injection of Somatuline Autogel, a once a month lanreotide injection for my metastatic neuroendocrine tumors.  After the first shot I had diarrhea but no more side effects after the second and third shot.  I sometimes feel slightly nausea during the day, but it's nothing that a couple of crackers can't take care of.  I was on Afinitor, but my tumours continued to grow and spread.  I will be going for a scan sometime in the fall, so I'm really hoping that the injections are working because I appear to be handling them quite well.

Re: Let's Talk Hormonal Therapy

Posted by Lacey_Moderator on Jul 28, 2020 9:42 am

TT53‍ - I can understand your concern. I would suggest starting a post with a subject "Anyone not prescribed hormonal therapy" in breast cancer. Any word from the second opinion?

Traveler‍ - Thank you for sharing your experience. So glad you are feeling well with the injections, fingers crossed they are doing their job. 

Re: Let's Talk Hormonal Therapy

Posted by TT53 on Jul 28, 2020 12:19 pm

Thank you Lacey_adminCCS‍  for the suggested.  Started a new topic and we will see.  I am going to get a second opinion on August 18th, so hoping for some clarity around this.  Thank you for being so supportive and understanding.


Re: Let's Talk Hormonal Therapy

Posted by Lacey_Moderator on Jul 28, 2020 2:14 pm

TT53‍ - I saw you started a new post! I'm glad you did that way your important question will stand out. 

I hope you get some clarity at your next appointment. 

You're most welcome,