User Profile
MBall
Member
Joined 6 years ago
User Widgets
Contributions
Re: Tamoxifen side effects
Another update!! So I ended up having to have a colonoscopy on Monday and thankfully it all looked normal! At the same time my surgeon did a sphincterotomy (small cut of the muscle) that will hopefully help everything relax and the fissure to heal. My goal is to helpfully stop having to take coloxyl and magnesium and just control with diet again. Oh the joys!!51Views0likes0CommentsRe: Still struggling with the word pre-cancer after DCIS mastectomy
Hi @averi i totally get where you’re coming from and have been through the same thing. I was diagnosed 1 year ago today with DCIS at the age of 36. My surgeon said to me that in Australia DCIS is considered cancer however anywhere else in the world they class it as a pre cancer. Saying that since then I have still been told by others that it is a pre cancer 🤷🏼♀️ it is definitely confusing and hard to know where you stand. I had a lumpectomy and re excision but still had cancer cells on the margin so was told I needed a mastectomy. I chose to have a bilateral mastectomy and immediate reconstruction with expanders. They also did a sentinel node biopsy where they took 2 lymph nodes one of which they found 8 tumours in. I am now on tamoxifen for 5 years. I actually wrote a post to put on my social media to raise awareness but am yet to post it. I’m not one to shout these things to the world but at the same time if it can help even one person to get checked i would be happy. Now to be brave and actually post it haha One thing I’m not sure of is DCIS included in the 1 in 7 stat? And is it 1 in 7 or 1 in 8 women that will be diagnosed with breast cancer?? I wish you all the best in your journey @averi. You’re not alone. If only things were clearer xx9Views3likes0CommentsRe: Tamoxifen side effects
Thanks so much for your responses ladies. I really appreciate it. Just to give you all an update.... I started taking some magnesium San pellegrino each night and this definitely helped things move along (@"Michele B" im not sure if this is the same as magnesium citrate?). I then spoke to my plastic surgeon who referred me to a lovely medical oncologist who I met with a couple of weeks ago. She spent about an hour with me going through everything which was great. Long story short she said obviously it’s not ideal to be on coloxyl and magnesium for too long if I don’t have to be so she said to stop the Tamoxifen for 3 weeks and see how things go and also try and slowly stop the magnesium and coloxyl. I have stopped the magnesium but still take the coloxyl as unfortunately I’m still having issues with bowel movements. So looks like it may not be the tamoxifen at this stage. She said if that is the case I’ll probably need to get a colonoscopy to look into my issues further. I also had my bloods done to check a heap of things and get those results next week when I speak to the oncologist again. To be honest it’s all doing my head in 😣 I know things could be a lot worse so I need to be thankful for that but I just need answers. Hopefully I’ll have them soon. So sorry again for the waffly message but it’s great to have a vent sometimes. Thanks for reading xx11Views2likes0CommentsTamoxifen side effects
Hello!! Just registered to the online community seeking some other people’s experiences with tamoxifen. I was diagnosed with DCIS in July 2019 at the age of 36. After having a lumpectomy and re-excision I then had a bilateral mastectomy And immediate reconstruction (expanders put in) at the end of September 2019. I also had a sentinel node biopsy at the same time. They removed two nodes and found 8 benign tumours in one node. I am now on tamoxifen for 5 years. It started off fine and then I started getting a real heavy feeling in my pelvis quite often. I mentioned this to my surgeon who said the tamoxifen can cause this. This has since lessened and I only occasionally get it. However in mid January this year I started having trouble with my bowel movements. Although I didn’t feel all that constipated I must have been at some stage as I was experiencing a lot of pain after a bowel movement. I saw a GP and spoke to my surgeon and they both said tamoxifen doesn’t cause constipation?? I was a little surprised as one of the side effects listed is constipation 🤷🏼♀️ I ended up seeing a specialist at the end of Jan/early Feb and he said I have quite a bad anal fissure. He prescribed a cream which did help but hasn’t fixed it. I’m finding the pain isn’t too bad for a while and then it gets worse again. The pain is so bad at times I can’t do a thing but sit and cry. The specialist said there is an operation that can fix it but there is potential it can cause incontinence. Obviously not something I want!! I guess I’m seeking others opinions and experiences with the tamoxifen. Have you had a similar issue, how was it fixed? I spoke to a lovely breast cancer nurse who said that it is an option to stop the tamoxifen for 4 weeks and just see how things go. I just don’t know what to do. I’m also thinking of getting a second opinion/talking to another breast specialist as I don’t always feel my surgeon has the time to discuss things properly. I don’t know if we’re allowed to ask for names of specialists or not hear?? I’m based in Adelaide. Sorry for the long waffly message! Thanks in advance x488Views0likes12Comments
Groups
Young women & breast cancer
This group is for young women affected by breast cancer. In the context of breast cancer treatment, ‘young’ usually refers to women who are pre-menopausal. Here, you can connect with others who understand the unique challenges that come with a diagnosis at a younger age. We talk about things like fertility, pregnancy, early menopause, ovarian suppression, relationships, and the emotional impact of treatment and recovery. Whether you're newly diagnosed or further along in your journey, this is a safe space to ask questions, share experiences, and support one another. You are not alone during this uncertain and overwhelming time.
