All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Morning all, it's nice to see the sun shining, I hope everyone has some plans to enjoy it.

Minty, What a bugger to have your cancer return so soon, I've got my fingers crossed you only have some DCIS and can avoid any chemo.

I've had my first four sessions of RADs, nothing to report really except a little bit of pinkness. It's such a weird experience as you feel as if you should feel different after the zapping but you just get up and walk away as if nothing has changed. Glad to have the weekend off though from the journey.

Morning all. I'm just lounging in bed with a cuppa. It's nice and sunny here too and I plan to meet up with a friend for a coffee and a natter later. Apart from that it's a generally quiet weekend. Hope you all have a good one.

Hi Royal, reassuring to hear the Tamoxifen isn't too bad so far, I'm not looking forward to it but hoping for the best. I asked my onc about the side effects and as he pointed out, all drugs have side effects and tbh if you read the side effects list for something we all have in the cupboard like paracetemol the listed se aren't great! Pepper hope you get your appointments sorted out, shame that they don't give you a week at a time for rads so you can plan ahead. When I went for my planning scan they did the times for all 4 weeks while I was there. Fresta hope your rads continue to go well, I know how you feel about not seeming right that you get up and go home. Iklboo sorry to hear about your Mum but glad that its been found in the early stages. chewing hope you enjoyed your lie in. Waving to anyone else that I missed.

Hi everyone.

I was just wondering if anyone here on tamoxifen still has periods. I got my period this morning, the first one since finishing chemo 3 months ago. My body seems determined to stay fertile, my periods have always run like clockwork and I have always felt very fertile if you know what I mean. I knew they were about to start again as all the other physical signs of fertility had returned (the oily skin, tender breasts and discharge- sorry if too much info ) I haven't started tamoxifen yet as waiting until after the RADs but do you think it's something to worry about? My BCN said I might or might not have periods on the Tamoxifen but didn't seem to think it was anything to worry about, reading on the internet though it seems that others have had steps taken to reduce their oestrogen production.

Ah fuck minty, sorry to hear that everything crossed for your scans and hoping you can get on with the treatment plan quickly.

lily are you around? Not seen you for a while. I hope you're doing OK

And for Sleepy too. I hope you're finding the new chemo tolerable.

In fact, all round. I hope everyone is having a good weekend!

Good morning all.
Fresta, Chemo does cause your periods to stop but they can come back of course as you are pre menopausal. Tamoxifen usually does induce menopause but whether or not that gurantees it is working I can not really say. Mrs may discuss this with you as she has some issues and has mentioned other options.
I am quite pissed this morning after I was sent a link to some article claiming chemo kills not cancer as claimed by some Berkeley doctor. It is totally disrespectful and i senstive of people to throw this kind of stuff at us knwoing what we have been through and are going through. It is bad enough without some egghead coming out to tell us " hey you know the. Chemo they gave you to treat cancer? Well it is useless and will actually kill you!" I am fuming to be honest
These so called experts come out to tell you what you have had is bad but do not even offer you a convincing alternative as if you have the time to play Russian roulette with your life! I did not need to see that and I am disgusted at how cancer patients are being manipulated.
Sorry for the early morning rant but I am sure you will all understand.

Royal who the hell thought it was ok to send you that link? That has made me so I don't know what to say. I am just at the very start of the process but the amount of information out there is hard to digest. I will trust in my consultant to do what he feels is best for me to get through this.

Hi chewing and so sorry to have upset you :(
Well the person who sent it does not know I have cancer but thought it was some "breakthrough" news itemw worthy of sharing , so I must be fair about that, but having read the article it seems like utter rubbish even for someone like me who is not a doctor! More people with cancer are living because of chemo and rads and not the other way around! This chap seems to be very controversial i also remember having read the very convincing myths debunked page on cancer research UK about all this nonsense out there about chemo being a sham etc..so we are in good hands.

You haven't upset me royal, honestly.
There will always be alternative,controversial views about anything but all we can do is take a considered approach with the information we've got. I read a similar article recently but it was my fault for browsing the internet soon after my diagnosis and before I have even discussed a treatment plan.
I am seeing my consultant today about treatment options so will ask some questions and go with his judgement on this as he obviously has a lot more knowledge and experience than I do.
I hope the rest of your day improves.

Someone shared an article on FB about how tamoxifen doesn't work, causes cancer etc etc. I was really disappointed because she is recovering from breast cancer. The article was written by Dr Someone. At the bottom of the page it said the author was a qualified vet. I know that vets have a long in depth training and are very smart, and I also know most would never pedal such dangerous nonsense, but this one was presenting half findings as science.

Been having a catch up .... Not posted for ages.
Had to post to wish minty all the best. Having to go through treatment again is very tough.

Love to all other lacies. Quite a few familiar names here still x

Morning All.

Totally understand why you are upset Royal. It's infuriating when people think shite like that. My friend sent me an article how dandelion root is better than chemo. It was meant from a good place but really? Shit, why didn't I think of that? Instead of listening to my doctors with years of science, research and training behind them, I could be eating the fucking weeds from my garden to combat breast cancer.

So I start the dreaded Tamoxifen last Friday - can you tell my mood has dipped slightly?!

Mysilly so we're doing rads at the same time - we can compare notes!
X

Morning everyone
Minty I'm really sorry to hear your news
Sleepy how are you doing ?
Love to all

Hi fresta, it is me who has been having an issue with bleeding on tamoxifen. I've been on it for two years now, started when I was 50 but not menopausal. Previously I had the mirena coil fitted but was still having very light periods on that. I had one period a couple of weeks after staring tamoxifen. I then had a pretty massive bleed about six months later so contacted my GP who immediately arranged a pelvic scan. Nothing alarming was found. I had another bleed six months later followed by another pelvic scan and hysteroscopy. The same thing happened a month ago, cue another pelvic scan and another hysteroscopy.

Thoughts are that my oestrogen is still causing sporadic and horrendous bleeding. I saw a gynaecologist last week who offered me the chance of having a hysterectomy. Tomorrow I'm seeing the oncologist to discuss whether this bleeding means that the tamoxifen isn't working as well as it might, not giving me maximum protection. I need to understand the science behind it. If I were post menopausal I would take a different drug which might offer greater protection.

So to answer your question, tamoxifen usually stops periods and in a younger woman they would resume at the end of treatment. But my whole team have been very quick to investigate every time it's happened to me so it is a cause for concern. Tamoxifen can cause changes to the lining of the uterus, which can be cancerous, hence the two biopsies in my case. My BC nurse has two other patients experiencing this SE, so I guess it's not that common. My advice would be to let your system settle, see if your periods stop. If they do but then you have a surprise bleed let your team know and ask to be checked. Uterine cancer is a SE of tamoxifen and bleeding is a sign.

When I've seen the oncologist I will let you know what he says. If there's anything I haven't answered just shout.

Why is nothing ever straightforward?
I have seen my consultant and am a bit shell-shocked. It turns out my cancer is a rare, aggressive type which is rarely seen in the breast and is not hormone receptive. This may mean it is secondary so could be elsewhere. I am now awaiting an urgent full body CT scan.
A date for a WLE has been booked in but I am told this may change depending on the CT results.

Oh chewing, I can't believe the trouble you are having getting a proper diagnosis, I'm so sorry this is looking more uncertain than ever. You have jumped in with both feet and been so very supportive of everyone here, it's beyond cruel that your own situation is still not resolved. I hope you get your scan this week.

Chewing I'm sorry you have more worry and more waiting. I hope they sort the CT scan very soon for you. We'll be with you while you wait x

still thinking of you chewing

Chewing, we are all here for you. Thinking of you.

Thanks all. The consultant must have known this 2 weeks ago but waited until the biopsy on the micro calcifications was done. This came out clear so 2 out of the 3 were benign. If it's secondary l am surprised that I haven't had any symptoms in the lungs etc. I was originally told that the tumour had taken 5 years + to grow to the size it had but now it could be just months I suppose. I was feeling quite positive and now am gutted

Oh no chewing, sorry you have more waiting and worrying also awful if the consultant knew and didn't tell you, and didn't arrange the CT scan as soon as they knew.

I hope you get a CT appointment ASAP.

Do you know the name of this type of cancer? Don't worry if you don't want to say, I'm just wondering whether it might be something that someone else might have experience of. There are quite a few oldies who lurk and pop up occasionally, and we have had quite a few oddities over the years!

I'm not surprised you are feeling gutted. I am sure nothing will make you feel much better until you have a definite answer for what is going on, so just sending a hug and waiting here with you x

Oh Chewing, you certainly are going through the ringer. Sending you hugs and keep those positive vibes going, easier said than done I know x

I know lots of you on here have had breast biopsies and am just wondering typically how long they take to heal? I had mine 6 weeks ago and whilst the news was positive I still cannot touch my breast and even Clotho g sends prickly pains through my breast. I also still have discolouration (assumed bruising) to that area of the breast. As I have been discharged by the breast team and my GP said she doesn't have a clue I am wondering how long to leave it? I bruised horrifically when it was fone

Thanks for that mrs, I had read about your issue but thought that it was only abnormal bleeeding that was a worry like yours. I wonder if just continuing normal menstrual cycle is ok while on tamoxifen. I guess I will have to wait and see what happens.

Chewing, I'm really sorry to hear that you have such worry at the moment, I hope you can get a clear idea of your situation as soon as possible. I've got my fingers crossed you get a clear CT scan. I guess having no symptoms elsewhere is a good sign. Best wishes.

Royal, I think it's best to ignore those conspiracy theories bout cancer treatments. They can sound very convincing but there's little truth in them. You could post the cancer research page back to the person who sent it to you?

mish, I think the bruising can last a long time, mine took longer to for the bruising and swelling to go (about 3 months) after my biopsy than it did after my lumpectomy. If it's hot or red though I would get it checked for infection.