Hello Tigs, 

Welcome to the forum. I'm sorry to hear about your recent diagnosis although I'm glad that that team have given you such positive news about the prognosis. 

Questions about Tamoxifen are quite regularly asked on the forum and if you use the search function (magnifying glass in the blue bar at the top of the page) you'll be able to find lots of threads to read through. I know that [@Jolamine]‍ and [@Magpiemaggie]‍ have both had experience with taking tamoxifen and may be able to share their experiences with you. 

Ultimately it's a personal decision to make but if you'd like to chat with one of our team of nurses then you're most welcome to give them a call. They're available Monday to Friday 9am to 5pm on 0808 800 4040. Sometimes it helps to talk things through. 

I hope that your surgery and radiotherapy goes smoothly. Do pop back and let us know how you're getting on. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi Tigs

as Jenn says I’ve been on tamoxifen for 8 months and now switched to anastrozole. I had DCIS then post op pathology should invasive ductal and lobular. I have also been told my prognosis is excellent. 

i had lots of side effects with tamoxifen; sore joint, leg cramps, sweats day and night etc - won’t lie to you, it isn’t pleasant. My oncologist told me as I have less that a 5% recurrence rate that I could come off hormone suppressants but I argued my case to stay on them, despite the percentage rate there is no guarantees when it comes to cancer and I want to throw everything I have at my disposal at it so that it never comes back. I’m on other medication to counteract the side effects of hormone therapy and it’s making a difference. However as Jenn says it is a personal decision to make, guided by your oncologist.

good luck with the operation and rads -  for me that was the easy part and I hope you’ll come to a decision on tamoxifen which you are comfortable with. 

Hello

Ive been on tamoxifen for 9 weeks now and have to say I feel pretty good, no side effects at all. I was really worried about it because I have never been able to take the contraceptive pill as they always make me really low and tearful, I also had a bad reaction when taking clomid so I wasn’t feeling very hopeful about tamoxifen but so far so good. You may find you are one of the lucky ones who doesn’t have any side effects. 

Good luck :-) 

Hi Tigs,

I am sorry that I haven't replied to you sooner. I did write a reply and, just as I was about to send it, it disappeared into the ether. At the time, I didn't have the energy to write it out all over again.

I am sorry to hear the worries that you have about taking Tamoxifen. I have had 2 bouts of cancer in the past 10 years. Both were grade 1 Mucinous cancers . This is also extremely slow growing and has a good prognosis. The first time I had a lumpectomy, followed by Tamoxifen for 1 year. At this stage, I discovered another lump in the same breast and had a double mastectomy, followed by Letrozole.

I did have side-effects to both, but Tamoxifen was a breeze in comparison to Letrozole. My initial problem was with drenching night sweats. My breast care nurse suggested that I took Venlafaxine, a mild anti-depressant, as she said that some ladies had benefitted from this previously. This helped a little, although it didn't get rid of them completely. My joints also became very sore, although there is arthritis in my family, so it's hard to tell what caused it. I ended up having both knees replaced and, will shortly need both hips done too.

I had trouble sleeping, had horrendous mood swings and, put on a tremendous amount of weight, which I have since lost. I have contributed to several discussions about Tamoxifen and Letrozole on this forum. You can find them by going to the search button on the blue banner at the top of this page. Insert Tamoxifen or Letrozole in the search box and click. This will bring up previous posts on the topic and give you the views of others.

When I had my lumpectomy, I was advised to have radiotherapy following surgery. This never happened, because I discovered another lump in my good breast just months after my surgery. My surgeon was very dismissive of this and, didn't even run any tests on it. As a result, I told him that there was no point in treating one breast with radiotherapy whilst ignoring the other breast.

We eventually reached an impasse at 11 months post-surgery, when he referred me to see the surgeon in charge of all the surgeons in my area. This gentleman dressed me down for 1½ hours, telling me that they couldn't have patients determining what treatment they had. I eventually told him that I wasn't demanding any special treatment, but that I thought that I had been sent to him for a second opinion on my second breast lump and, that all I was looking for was a diagnosis.

He agreed to examine me and found the lump immediately. He sent me for mammogram, ultrasound and biopsy and I returned a week later to be told that this was benign. This surgeon offered to take over my care and, although his hospital was quite a distance from home, I agreed to this and, have never looked back. After this, I went to see two researchers who specialised in radiotherapy. The first was of the opinion that I might as well try it anyway. The other said that there was absolutely no point in having it if it wasn't started within 3 months of diagnosis. I felt that the latter gentleman was better informed on the subject and decided to go with his advice.

Despite the many side-effects from Tamoxifen, I would have no hesitation in taking it over again, as all were managable. Like Magpiemaggie I just wanted to throw everything I had at my disposal at the cancer to ensure that it never returns. Despite the percentage rate there is no guarantees when it comes to cancer and, for me, this was fully justified when I had a recurrence within a year.

It is a difficult decision to make as to whether you go with it or not, but this decision has to be yours and yours alone. However, getting the opinion of others is the best way to reach the right decision for you and, I sincerely hope that you manage to reach it soon.

Do please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx