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.

Hi lily, I was getting worried about you as you hadn't posted until now. I'm sorry it wasn't better news. I'm sure you will not miss your huge commute though and will hopefully fill your time with more enjoyable activities.

Royal, best of luck with the tamoxifen. I've been wondering if it's responsible for my bit of weight gain or I'm just being lazy. I'm at the gym again three times a week trying to work it off but apparently eating less is advisable too....!

Rust, I'm pleased you're through the surgery. One day at a time is the only way forward and take all the help offered. I'm sure your team will be doing absolutely everything in their power to get you through this.

Lily I'm sorry the news isn't the best and that you might have to retire earlier than you wanted to. Bloody cancer.

Gosh lily, sorry it wasn't better news - did your vertigo ease yet? Hopefully the paclitaxel will do a sterling job. Retiring before you want to is a bit shit isn't it. Does your DH still work?
I'm still debating putting my name forward for voluntary redundancy. Unfortunately I am absolutely the only person who is actually in any doubt. This upsets me, I worked so hard to get where I am, and to realise that, that's it - last year was my career peak is really really upsetting me. Everyone else (DH, parents, siblings, friends) is, well, you have rubbish health, a stressful job and a chance for a pay-off and to relax. My salary is exactly the cost of the mortgage and the critical illness policy that paid it off last month, plus childcare, so completely cost neutral.
It's like admitting defeat.

Lily I'm sorry that your results were not what you wanted. I think retiring early is a hard decision for both you and pepper because having a career gives a sense of self that isn't just a cancer patient. I'm feeling quite at a loss because I'm not working. However I hate commuting and I wouldn't fancy a 4 hour daily commute.

I am feeling more at ease about retiring - after all I am not 40, but at an age when many people have retired and we are financially secure. I don't want to be bored and depressed and I will miss work/professional colleagues as well as the intellectual stimulation of working for some very clever people.
DH still works but has already cut down to 70% of full time though he is also doing some freelance work and is a visiting professor, which he really enjoys. He is already getting a pension from a public sector job he left nearly 20 years ago. He is thinking about cutting his hours further. He works on a science park in the next village so doesn't have far to commute.
I'm more concerned that I don't have too many tried and tested treatment options. Hormonal treatment doesn't seem to be effective and neither of the last two chemos have had much effect.

Hello everyone, I'm new and hope I'm ok to joint his thread. I was diagnosed with breast cancer a year ago, had a bilateral mastectomy with recon last May. I had a Oncotype DX test and my oncologist advised me that chemo 'would do more harm than good' in my case, no radio, no mammogram recalls and I feel a little like I've been drop kicked off the cancer bus grasping a tamoxifen prescription.
I know this all means that my experience of bc is 'good' under the circumstances but I still fear a reoccur ance every day (remaining positive majority of the time, but it's bloody hard to be positive all the time).
Currently awaiting test to see if I have the cancer gene and go on to have my ovaries removed too. I don't know anyone personally who's had/got bc so I'm glad to have found you all.

Welcome to the thread inwine, I think recurrence is the greatest fear for us all. I worry about it all the time, even though I'm not even officially cancer free yet.

Lily, I'm sorry the news wasn't what was hoped for, it must be very worrying but hopefully the next chemo will get the cancer under more control. If you are not ready to give up work completely is there any way of working from home at all?

I've managed to get out and about this weekend, although I have been struggling with pain and tightness down my arm and armpit. I can feel and see definite cords in the armpit area when I stretch and raise my arm. Reaching down to pick things up from the floor or trying to remove items of clothing over my head are particularly painful and I just can't manage it. I am stretching as much as I can manage. On the plus side, seeing as I have been told not to carry a shoulder bag on my affected side I just HAD to buy a gorgeous new handbag which can be worn across the body

Evening all.
Sorry that the results weren't what you'd hoped for Lily. I hope that the chemo you are on at the moment will keep it under control. Also a bit rubbish that you have to think about giving up your job if you don't want to.

Rust- glad you are home. Take care of yourself. Remember your exercises.

Welcome inwine. Thoughts of recurrence are hard to push away. Hopefully you won't have to wait too long for the results of your gene test.

Thank you Fresta and Speedy, I'm so glad It's normal to worry about reoccurance, and not just me being precious.
Speedy, I'm almost hoping the gene test is positive and I can have my ovaries removed and that'll be another less thing to worry about. As I have two teen Dds I also feel that's a selfish attitude on my part as if I do have the gene then they both have a 50% chance of having it too.

Welcome inwine - I worry about recurrence and only had my most recent scan 4 weeks ago! Perfectly normal, especially if you have no kind of check up plan in place. They say they want to remove my ovaries as part of my treatment later in the year so I'd be interested to compare notes
fresta, hope your arm eases soon, when is your post surgery appointment?

Very normal to fret about recurrence possibilities, yes.
Rust, hope you are resting as comfortably as possible. Keeping things crossed for everyone waiting for results.

Lily, I am hoping your splendid expert Oncologist has by now done the genetic personalised testing for you (or is planning this), and is talking to you about the immunotherapy options, including those in Germany.
Lots of newer possibilities for those who have had progression on a few different treatments. Not all of them always announced by teams, maybe because there isn't standard NHS funding, and they may be worried about recommending things outside of the NHS which may cost a fair bit (and carry some liability on insurance).

Hi inwine and welcome. As others have said it's perfectly normal to worry about recurrence. I had my two year mammo earlier this month, it was clear thankfully but I'm very aware that things could be going on inside me that can't yet be seen and won't be checked for another six months. It's a scary thought which I try to push away but we all feel it.

I'm just on tamoxifen now after surgery and rads and felt for a long time that I hadn't done cancer properly by avoiding chemo, which in my case wouldn't have helped either. It does get easier to live with and its nice to come here and chat to people who understand.

Amber
"Lily, I am hoping your splendid expert Oncologist has by now done the genetic personalised testing for you (or is planning this), and is talking to you about the immunotherapy options, including those in Germany."
Hmmm - not as yet! I am currently a private patient as my employer offers BUPA ... now would that make any difference?

Welcome inwine Whatever the treatment, you can't win. If you don't have certain treatments you wonder if you should have had them, if you do, you wonder whether they have really worked ... and so on.

I've done the deed today and announced to my boss that I am leaving ... staged departure by the end of July. Loads of stuff to tie up meanwhile including a procedures guide (such joy).

Not sure whether it would make any difference re the private patient/NHS routes for this. But worth a chat with the team when you next see them.

How available is immunotherapy? It has been all over the news and health journals. Is it easily provided? Anybody know? amber?

Thank you all for your reassuring support regarding recurrence, it's very reassuring to know I'm not on my own on that one.

pepper I'd be very happy to compare notes re ovary removal, if it goes ahead for me then it probably won't be until the new year.

mrsrhod I think I understand what you mean when you say you feel like you 'didn't do cancer properly'. I feel a bit of a fraud to have avoided chemo - and also a little worried that maybe I should have pushed and asked for it anyway. Completely irrational in my case. I'm very pleased that your mammo result was normal, try not to worry in between times - easy for me to say, the queen of worriers.

Chemo today again. I had no SE's on this round so was feeling a bit paranoid it wasn't doing anything. I got my blood results. My platelets had improved and in normal range, neuts normal and good but Hb dropped 10 to 94, so not too bad but changed. I actually feel happy that chemo managed to knock back cells so I know it's doing stuff. I think I'm a bit odd.

Inwine, I too felt a fraud and wondered if I should have pushed for chemo. At diagnosis I was too terrified to ask too many questions and just accepted what I was told and took the treatment. It wasn't until a check up with my BC nurse six months ago that I asked a few more questions and now understand that what I need is tamoxifen to knock the oestrogen out as mind was 8/8 ER responsive. Chemo would not have been worthwhile but unless you understand why you do worry that you're not getting the full treatment. As you say, completely irrational. I'm trying very hard to get on with life and believe in a future.

Sorry to hear it has got into your liver too Lily and that you are having to retire earlier than planned.

I don't start back on the capecitabene for another week but was given a form today so that I can claim pip and cash in my pension.

Sleepy as you well know, unfortunately, being told of progression is grim. I hope the Cape works for you as it did for me. SEs not too bad apart from the plantar palmar for which copious amounts of hand and foot creams help.
Further developments on the work front - they don't want me to leave! So they will take on a temp, move me to doing some work for them at home or in the office at an hourly rate but retain me as a member of staff. And they want to keep paying for my BUPA!

Love to sleepy and lily

Lily they obviously can't manage without you, nice to be appreciated !

Lily, that's great news particularly about the BUPA and continuation of care. I was wondering whether you would be able to still see your consultant and I'm so pleased that looks likely. I know you've had awful news but I hope today you feel very valued and a bit less like you're out on your own.

Sleepy, nice to see you again. I hope your team are keeping you comfortable.

Just checking in to say hello to everyone.

I don't post much now but do keep up with the thread pretty regularly and so many of the issues still resonate with me, especially, most recently, worry about reoccurrence and feeling the need to 'seize the day' for want of a better phrase.

Latest manifestation of that for me is a trip to New York with the family at the end of May, something I've always wanted to do.
Ive also been doing Slimming World for a while and should be at target weight by next week. It was a case of ' if not now, then when'?

Bloody cancer. ....I would give up the New York trip twn times over never to have had it and for you all never to have had it either.

Lily and sleepy...hugs for you my darlings xx

Good morning( or good night) all,
Lilly what uplifting news regarding your employer. I am sure you are an invakuabke member of their team for them to be so appreciative. It certainky will be easier for you now they are making your hours flexible and continuing your medical insurance! So pleased for you.
Day four of Tamoxifen for me and still no major SEs, well except for what I already had : fatigue and restless sleep! The hot flushes I already had from the chemo! I hope I do not have to struggle ahead. I have started exercising and my legs are aching from it:( but i have to start moving more. I am hoping my body will slowly relax and regaun some form of fitness.
Have a good day ahead all. Will try to get back to sleep!

Marshy lovely to hear from you, New York will be fab ! We went last summer and it was amazing. Have a lovely time. Well done on the weight loss too

Royal you might not get any SEs from the tamoxifen, I don't. Sorry you were awake in the middle of the night

I've got a yearly check up with the nurse next week and I need to book a smear test too. Lucky me !