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.

Grr to cancer nonsense. Often these things seem to spiral from a tiny grain of truth. Yes, chemo is dangerous and can cause permanent damage etc. It can occasionally kill people. But it's the best option many of us have right now! We would all much rather eat some magic fruit or take a vitamin tablet or whatever. But thankfully most of us place our faith in science and medicine rather than in some random person on the internet looking to make a quick buck.

Wisely said leslie. I totally agree. It is not like we have a choice.
Chewing, i hope a proper CT scan will clarify things.

Leslie it's small cell.

small cell breast cancer is indeed very rare. However I believe the prognosis is similar to other breast cancers assuming it is not a secondary. I would have thought that you would have had symptoms if it originated in the lung. Indeed small cell cancer of the lung in non-smokers (are you?) is exceptionally rare..

I hope you are getting lots of support through this

Hi Nervous good to see you again
I am a non smoker now but was a light smoker around 20 odd years ago. Apart from the chest they are also checking out the liver and kidneys. I feel the fittest I've been in years and have had no serious symptoms so am hoping it is a Primary in the breast. Small cell generally has a high recurrence rate I think.

fresta that's what I need to find out, whether any bleeding is dangerous or just this sporadic bleeding I've had. I will report back.

chewing fingers crossed it's a primary and you are a medical rarity :)

A friend shared this Guardian article about "cancer friends". I quite like it.

One of the good things about my diagnosis is how many friends I have made. Many are people that I met on this thread originally. Now we are very much real life friends. We have lost too many along the way, but I suppose that's the reality of cancer friendships.

I was so pleased when I found this thread all those years ago. It's not a club I'd choose to be in, but as we are in it, at least we are all in it together!

Wow leslie that is a very moving article. In some ways I am scared of becoming friends with other people who have cancer but then only someone who has cancer would really truly understand.
Chewing, I echo wha the others have said hoping and praying it is a primary.

chewing, so sorry to read your recent posts, like everyone else I hope its a primary in the breast and they can get on and treat it. I hope you don't have to wait too long for the CT scan, I know only too well how hard the waiting is.

leslie, I'll take a look at the article when I'm on the train later but thanks for posting

mish, I'm just one week post biospy and still pretty sore (but not bruised) but then I'm spending an inordinate amount of time thinking about my breast so that's probably not helping. Have you thought of trying something like arnica to help with the bruising?

fly, hope the tamoxifen is going down a bit better now :-)

royal, totally agree with you about the senseless postings that some people make when they have absolutely no idea. As patients we have to follow the advice that our specialists give us and whilst we are made aware of the risks, we make informed decisions as to our treatment. At the end of the day all we want to do is stay alive

Thanks everyone for you thoughts and best wishes. I'm ....functioning... shall I say. I'm trying to work this week to keep me occupied but my concentration and stamina levels are pretty low. I got home yesterday to a message from the plastics team at the Marsden (why do hospitals insist on calling my home number and not my mobile??) so I need to phone them today to make an appointment to discuss reconstruction. I think there's another appointment from someone in the post so things are beginning to happen.

I haven't cried yet - although I felt a tear prick my eye on Friday eve when I was driving DD to gm club and Rod Stewart's 'the first cut is the deepest...' came on the radio

Good article Leslie
minty I have that song as an ear worm now. I do like Rod though so it's not too bad
Ds is out all day so I am going to go through important paperwork and get it in some sort of order. I do all admin jobs at home and if I wasn't here dh would really struggle.
Thanks for all your good wishes. It's good 'chatting' to people that understand rather than friends and family that say 'keep strong, it'll be fine' etc when I know things have taken a turn for the worse now. I am trying to keep positive but I've not had the best of luck so far through this

Hello everyone. Tough times for all now it seems, thinking of everyone with not so good news recently x

I've been having a tough time with the Docetaxel. After my 4th chemo (1st Docetaxel) I ended up in hospital for a few days with neutropenic sepsis. Scared the shit out of DH and my poor mum. I'm now absolutely dreading the next 2 cycles. Did anyone have a reduced chemo dose after something like this? The side effects were pretty grim so I think I'd be glad of a smaller dose. The end of chemo is only a month away but it just seems insurmountable.

Talking of people sending you unwelcome cancer advice...I have a client who is really big in the alternative medicine world. Literally the day after I told her I had cancer she sent me her newsletter with the story of someone who had said no to chemo in favour of some other weird therapy. I was quite stunned. I just have to ignore it because I have to work with her - she does it ALL the time.

FlyChickie how was your holiday? When do you start rads?

For the last 6 weeks I have done very little as I have been struggling with fatigue from my treatment, but in the last 5 days I have been much more energetic. I find I can go all day without needing a nap, and even better than that chocolate tastes like chocolate

Yesterday I met a friend for for a long lazy lunch followed by sitting in the sunshine by the river just chatting. Originally she was a friend of my husband's but as soon as she heard my diagnosis she pestered my husband for me to get in contact with her. So I found her on FB and we met up just before I started chemo. She is 2 years out from her treatment and is also in her 40's. I wasn't sure if we would get on but we really clicked. She was determined that every cycle I should have a nice week 3 treat and so that's what we did. She's my RL cancer friend and she's been very helpful.

Elmindara I had febrile neutropenia after my first FEC even though I was taking GCSF and was given a dose reduction for the following cycles. I also was given a higher dose GCSF. My FEC 2 and 3 went well, but my dh was also very freaked out by it. I actually didn't feel particularly unwell, so I was really shocked when I was told my neutrophils were 0. My oncologist decided not to risk me on docetaxel because FEC is less likely to cause neutropenia so she thought I might not do well. I had paclitaxel which worked well for me in terms of no serious SE's and no further chemo admissions. Hopefully your dose reduction will also do the trick.

Chewing I'm really sorry to hear your news. I also hope your scans are done within the next week because you have been waiting a long time already and I'm sure you want to start moving on with your treatment.

I've seen the oncologist and it was a rather weird appt., he hadn't had the letter from the gynaecologist so we had to start from scratch which was a bit awkward. So, firstly for fresta it is perfectly fine to have periods on tamoxifen so I hope that answers your question. It doesn't mean that the tamoxifen isn't doing a good enough job in blocking oestrogen. Also it is ok to remain on tamoxifen post menopause, which was news to me. I have always been told I'll be switched to anastrazole about half way through the five years.

In reality they would try me on anastrazole but if I don't tolerate it I would be able to switch back to tamoxifen and the protection for me would be very similar.

Having gone round in circles a bit his recommendation was to have the hysterectomy but it's my decision still. I need to do research into that now. I don't know if anyone here has had the operation? It would mean an instant menopause with no hrt help. Plus all the risks with surgery.

Thanks for reporting back Mrs, that's reassuring as it's in line with what I've been told by my BCN. A hysterectomy is a big descision to make, I guess it's a case of weighing up the pros and cons.

Hope you are enjoying your chocolate silly

Thinking of everyone having treatment and waiting for results right now

Evening all, firstly to everyone having a tough time, waiting for results or treatment, or feeling poorly.
chewing so sorry you have to wait even longer, really hoping that it's a rare primary.
mrs more choices! good that there's nothing sinister in the bleeding but you seem to have some time to research. I have almost decided that I will have my ovaries removed if the chemo and tamoxifen do not trigger a menopause. I think I'd like it over and done with rather than the regular injections (I will be having the zoledronic acid anyway but that's 6 monthly). But the instant menopause with no hrt safety net does worry me so I need to think more on that later in the year.
I saw my surgeon today, he is so lovely, I had been concerned about realising from my diagnosis letter that the margins of my tumour were clear (by 0.5mm) of invasive lobular cancer but evidenced LCIS. Now DCIS clearly is cancer but he explained LCIS is a risk of cancer not an actual cancer, so they worry less, but the LCIS will have been a deciding factor in my having chemo. I'm glad I understand. BUT, why is there always a BUT, he was prodding the other breast where I have a cyst which was spotted at my very first mammogram in Jan, and said "I'll just pop a needle in this" . He wanted to drain it, but no fluid came out, so the stuff he got (which looked like blood to me) has been sent off for testing. He didn't seem worried at all, but....
I saw a counsellor on Monday which is a start to getting my head back together I hope, I cried pretty much the whole way through - in fact, I had to take my glasses off almost immediately and rather embarrassingly, if I bumped into her it the street I suspect I wouldn't actually recognise her .

Morning all just checking in and catching up. Hugs to all those in need there does seem to be tough times around and where people get off forwarding total shite and drivel I don't know . elimindarina i also ended up in hospital for 6 days with neutropenic sepsis after first docetaxol despite gscf however saw oncologist yesterdsy prior to treatment and bloods were OK so 2nd went ahead with the caveat if it happened again (mag or may not) he would switch me to weekly paxitell.
pepper hopefully nothing to worry about but that's easier said than done.
Thinking of everyone xxxx

leslie i also like the article x

Please can I join you? I'm a long time lurker but have never really posted much. I was diagnosed with DCIS yesterday and I'm in shock. I'm having surgery next Friday to check out my Lymph nodes and then I'm having a masectomy. I can't get my head round reconstruction. I have small breasts and have been advised to have flap reconstruction as I'm too small for implants. Have any of you had any experience of this and was it done at the same time as the masectomy? Sorry to babble

Welcome norajane, but sorry you need to be here. Bowel cancer here so can't help with the specifics. I'm sure someone more knowledgeable will be along soon :)

helly fingers crossed this cycle goes better

Waving to everyone. I'm at the chemo unit today for my next dose. I'm on my phone so can't see many posts on the screen and I'm lazy so I haven't replied personally, but I'm thinking of all those who are struggling for whatever reason

Morning all
mrsrhod glad that you are moving forward a bit but I know nothing about hysterectomies I'm afraid. I have gone through the menopause which was a bit grim but everyone is affected in different ways. I was advised to stop HRT a couple of weeks ago and was expecting to feel a bit rubbish but have surprisingly been ok. As my cancer has now turned out not to be hormone receptive I didn't need to stop it really anyway I think I'll stay off it for now until I know more about my treatment.
Leslie hope your chemo goes ok today.
pepper fingers crossed for you
norajane welcome. I am new to this club too and there is a good, supportive bunch here.

I have my CT scan tomorrow so fingers crossed that there isn't a primary hiding somewhere. Hope you all have a nice day today.

Ha - afternoon all I should have said. Where does the time go?

chewing everything crossed for you for tomorrow. Do you know when you'll get the results?

The consultant requested an urgent scan so I am hoping results will be available in a few days. I have a pre-op appointment next week but have been told it is dependent on the CT scan whether the op goes ahead or not so I would expect to hear something early next week.

I'll be thinking of you tomorrow chewing.

Welcome norajane. I don't know about mastectomies I'm afraid but sending support.

How was this chemo leslie? Hope it's an easygoing one.

Waving to all.