The Great Recovery! After cancer what next?

[TopOfTheCliff]

This thread was suggested on the general Cancer Thread
https://www.mumsnet.com/talk/general_health/4895824-cancer-support-thread-90-still-the-best-threads-no-one-wants-to-be-on?page=15&reply=129923637 as a place to come when you are recovering.

You may feel your treatment is over and you are cured or at least NED, or it may just be a lull between storms, but you want to step away from the daily grind of chemo and radiotherapy and look to the future.
Most of us come out the far side of a cancer diagnosis battered and unfit and probably overweight from the steroids and the comfort eating. Where do you start? How long will it take ? Should you diet to lose weight or try to exercise more? Then there is the huge mental hurdle of putting Cancer behind you and not worrying about recurrence with every twinge.
I am a veteran of the Cancer Thread having had breast cancer twice in two years and I managed the recovery after cancer no 1. Now I have to do it all again but in good company I hope.

I'm so glad I joined in with this thread.

After reading what you have all been writing about exercise & recovery I was prompted to research what's available in my local area. I've found out that my local council leisure centre has cancer rehab sessions. I need a referral from my GP so I'm popping into the surgery later to give them the forms - hopefully my doctor will approve it for me.

I've also found out that a local yoga teacher is working in partnership with the NHS to deliver yoga classes specifically for cancer rehab. She runs them in half term blocks so I've emailed to find out about joining her class after Christmas.

I'm feeling a bit more positive about it all.

@MissMarplesNiece -brilliant! Those sound really great! Well done!

I'm just hoping my doctor signs the form for me

Just stumbled across this, I see some familiar names.
Quick bit about me. Diagnosed March 2021, ER/PR+ breast cancer. Mastectomy amd immediate implant reconstruction April 2021, no sign of anything in lymph nodes on scans but tiny amount was in 3 of 5 nodes they removed so had chemo, then full axillary clearance which showed no evidence there'd ever been cancer in those. Radiotherapy Jan/Feb 2022. Got DVT in arm thanks to PICC line and still on precautionary blood thinners as long as I'm on Letrozole. I also have 12 weekly Prostap injections.
I did the Macmillan HOPE course which was useful at the time but I don't think the recurrence fear will ever leave me.
SIL thinks I should be "over it" now but it doesn't work like that! I get tired more easily, possibly due to sleeping less due to enforced menopause symptoms. I have been doing some casual work as I don't feel I can commit to anything permanent.
Macmillan at my hospital do some gentle exercise classes which I found not enough as they're covering all ages and fitness levels. However, they were a good starting point.
Breast cancer ladies, the charity Future Dreams have online and in person exercise classes. Some are during the working day and I don't have space to exercise at home! I attended one in person class which was continuing to regain strength with a lady called Sarah Newman. She was great and really helped me refocus my gym routines. She does an online class via Future Dreams on Wednesdays as well as her paid for stuff under getmebackUK.
I'm slowly getting somewhere now. Still feel about 90 some days mind!

@MissMarplesNiece that sounds fantastic- start crying if necessary the GP would surely not say no!

@Vinorosso74 it sounds like you are similar to me with treatment- and a similar age if that's your year of birth in your user name. Though they found more lymph node involvement and I had total clearance and additional radiotherapy on top of the chemo. I'm also on a drug Abemaciclib for 2 years- only licenced just after my diagnosis so was fairly new. It brings some unpleasant side effects but not unliveable with.
The hormone injections I was having were monthly so I've opted to have my ovaries out- should be happening Monday! I feel I've gone from barely in peri to right on the other side and it is ageing mentally, even if my physical symptoms not too bad so far. However I will do /take anything to feel proactive against reoccurrence.
I'm back to a yoga session with my old group tonight- looking forward to it but think I will be stiff as a board- particularly on my lymph clearance arm. Will get out for a walk in my lunch break today as weather is pretty nice and it's good for the spirits.

That’s great@MissMarplesNiece a fellow vet of the elderlies boards….. sounds really positive.
Hearing others stories is really helpful.

Glad you had a good day Fairywren I was amazed what a difference swimming made to my mood but also aware when you are feeling down how annoying it can sound when someone says exercise and how hard it can be to motivate yourself to go the first time. And even when you start the first few times can be very tiring. But its absolutely worth persevering and building up gradually. I love the places with saunas, steam room, jacuzzis etc so you get some fun time too though I do see some people who just stay in those the whole time. And in the better weather outdoor swimming is glorious, not brave enough to go in winter. Admire people who do though under 16C its also not recommended without special knowledge.

So happy to see your message MissMarplesNiece and hope you can get something signed off. There is normally a fair amount available for cancer I find but they often don't tell you so you find out by word of mouth or forums. I get ESA and use that for my swimming. I have heard of GP schemes though.

Hope your op goes well Rose I have oncology call today to discuss letrozole and if I remember this is a big if I may ask about that. Though at the moment I am veering towards staying on Tamoxifen.

I had the thing with what to wear too and didn't feel right or fit into pre cancer clothes after my year on Tamoxifen. Initially in cancer treatment I just wore anything comfortable even though it looked rubbish. I did find that got me down though and I was better when I made a bit more effort with clothes until I got a photo and realised even though I had bothered with nice clothes I still looked not great. Then I avoided mirrors and cameras which helps. 😂Appearance is slowly coming back but its painful getting there. I have discovered sadly that low sugar seems to have with the water retention on Tamoxifen and since I've gone low sugar sobs that has gone. Might also be salt but never a big salt eater. Things like fruit seem to be fine and very low sugar makes me feel sick and shaky. So needs a balance. I have abandoned elderflower cordial, fizzy drinks and sugar in tea and given up coffee altogether and no alcohol though only had small amounts before. I do have the odd hot chocolate but I do find as soon as I have sugar I get hungry and its sadly definitely the issue. I love cake and sweets and I so want it not to be. Though actually sweets I have stopped wanting. But cake I definitely still want and sometimes want coca-cola but have to stop myself other than occasional ones. I am still at 4kgs down, 10kgs to go, urgh. I restarted diet day before yesterday first day went well as went swimming, second day was going well then I got really shaky and had to eat something so yesterday had full amount of calories. Still today should be swimming again.

@Vinorosso74 I am glad you found us. I remember you from my BC cancer no 1 treatment days. I have packed a whole cycle of treatment for BC cancer no 2 in since then, so bashed around on both sides now. I must say the yoga does wonders for the shoulder/arm stretching, as well as my soul.

I went for a fitness class on Tuesday that was far more energetic than expected ( or advertised). I survived but have been aching since, mainly ankles and knees. Must try to take it slower and more gently, all the leaping about was a mistake. Today I managed a lovely 10 mile bike ride on my ebike but need to get back to self propelled soon or I will be too addicted to give up my lovely Vista bike. Also it might help me shift some weight. Like you @Silkiebunny I have shed 4kg but got stuck with 10kg to go at least. No sweet things here though. I actually prefer cheese!

My social media detox is helping my mental state. I am watching puppy videos instead of seeing dying women being brave.
Love and strength to all.
Top

I am another 'graduate' of the main threads - diagnosed with BC in August 2022, full node clearance and chemo etc, and also on abemaciclib (hello - @myrosehasleftme)I am just popping in to celebrate making myself go for a swim for the first time since before my surgery. I used to love swimming but have lost all confidence and prefer running now as I can do that on my own and out of sight. But I know swimming will be good for what seems to be early lymphoedema - I'm currently waiting for a referral. It was really hard physically and a big mental hurdle to get over. And I was very slow, and my arm hurt a lot. But I did enjoy being in the water, and will try to go again. It does feel like a tiny step towards recovery.

@myrosehasleftme yes that is my year of birth so wasn't menopausal before this shit show. I've found the sudden menopause quite a shock. Chemo started it but all this hormone blocking stuff is a lot more brutal than I expected.
@TopOfTheCliff I have seen you on the cancer threads, I have dropped by but have mostly been avoiding the threads for various reasons. You've certainly had a rough time but pleased you're through round 2. You're always a wise and knowledgable voice on these threads.
Today, I have been wishing my hair was also fully recovered.

@dotty2 snap with the August 22 diagnosis month. Congrats on the swim. I'm off the abemaciclib pre surgery and my digestive system is about normal after 2 weeks. I will go back on as soon as recovered though, Had my first yoga back with my pre BC teacher, have done bits online here and there but it was really great, my arm is not the same but I kept up and it felt good, will get a permanent slot next year. She has offered me some outdoor swimming in her lake which makes me feel a bit nervous but think it could be fantastic so i'll build up to that next year. I had a referral to a lymphoedema clinic last year, it turned out not to be but they gave me some really helpful advice. I'm very aware of strange sensations and twinges in that side though.
@Vinorosso74 the whole menopause thing seems particularly annoying at a time when everyone is obsessed with HRT, I think people have felt more horrified for me not being able to take it than for having cancer!

Goodness the obsession with HRT. It's everywhere. I think women who have been through a breast cancer (or other which means HRT isn't an option) are excluded from a lot of the current menopause discussions. It's great menopause is being discussed but does everyone and their hamster need HRT? I am possibly sensitive being the age I am and friends singing it's praises while I just crack on with my old lady stiff joints.

I just tell people that my breast cancer was the result of HRT. I took it for 3-4yrs before being diagnosed. I was just one of the unlucky ones. They tend to ask how I can be so sure, I tell them that I had a clear mammogram just before I started taking it then found a lump 4 yrs later. My bc was 8/8 for hormone positive.
I have to admit that I didn’t know that 1 in 7 women will develop bc in their lifetime, pretty strong odds, even a small increase in those odds is significant.
I belong to an online support group and asked how many members were post menopausal and were diagnosed after taking HRT. Within an hour nearly 50 members had given a positive reply.

HRT has not been very popular over the last 20 yrs due to the bc scare, so the stats we have are still not reliable. We have no idea what HRT does to perimenopausal women since it was only prescribed to post menopausal women and women who had had an early menopause through surgery or primary ovarian failure. These women were replacing hormones that their bodies could no longer make. Perimenopausal women are still producing their own hormones.
One of the biggest risk factors is prolonged exposure to oestrogen. I just can’t work out how HRT is not seen as prolonged exposure to oestrogen.
Pharmaceutical companies can’t keep up with demand currently they must be making money hand over fist.

@Angrymum22 im interested in your comments about hrt and breast cancer. I’d like to go back on hrt if they let me - I’ve now had everything removed and I was triple negative. Not sure if it can make anything else pop up?

I’m really pleased I’ve found a nice quiet gym and swimming pool 5 minutes from home so I’ve signed up! Just had my first swim, they also have a yoga class at a time I can make too! And it’s reasonably priced! No excuses!

I don’t have breast cancer, but still think HRT was significant in my developing cancer -it’s ovarian cancer.
i had the progesterone coil - so was on unopposed oestrogen- which I was told was safest option. I was also on a low dose of HRT

They do next to no checks once women are on HRT. Certainly not for ovarian cancer

i have a theory that they push HRT because of the savings for NHS on things like hip fractures- as it does help prevent osteoporosis. Cardiovascular health should also improve - perhaps less future costs for NHS.

HRT is heavily pushed, not least by the media.
I don’t exactly regret being on it, but I wish Drs took it more seriously as a drug with potential side effects.

I don't think that HRT caused my endometrial cancer, but I suspect it made it spread further than it would've done otherwise, meaning I had to have chemo rather than just a hysterectomy, an increasing the risk it will return. It's well known to thickened the womb lining without progesterone, but I don't think my progesterone was being absorbed, as my period never fell into any cycle with it, I raised this a few times, but nobody seemed bothered.

When I read the medical literature it's thrown into question for me whether I should ever have been prescribed in the first place, or certainly I should've been given more information, as someone who had trouble with hormones and periods all through my adult life. I certainly think I wasn't screened enough nor monitored enough. I got it from a private clinic, not the most famous one, and I often feel the HRT thing is a bit of a cult. People have been poking fun and derision at the recent guidelines around CBT and menopause, and I'm a bit sceptical about CBT anyway, but the constant push of HRT as the only solution, and if you don't take it, your bones are going to crumble and you're going have a heart attack and get dementia does my head in! in fact, the only evidence about cognitive decline is for people with an APOE4 gene, a recent study showed no effect for anybody else. I also had a tiny spot of ovarian cancer, and although I couldn't particularly find a link around HRT one medical professional I spoke to, I can't remember who it was said she thought there definitely was a link but research was still being undertaken.

On the other hand, one of the reasons I did take it was another condition that I have whether the research does indicate that it does make a difference, but when I ask my consultant about the effects of the menopause on the condition. he said nobody had asked him before and he didn't know anything, even though it's most likely to affect women between 50 and 60, so I guess I was self-medicating because of that. No cancer in the immediate family, I no longer drink, I've always exercised, I ate healthily, I didn't think it was a risk. How wrong can you be?

@SierraSapphire
That’s similar to me. I have a family history of adenomyosis (like endometriosis- but in the muscle of the womb). I think I had it - used to bleed a little from my back passage at period time.
But 4 kids and two with special needs - never time to think about me.

No screening questions about family history from the GP when I started HRT, just interested in symptoms of menopause

At my Ultrasound scan they didn’t see the cancer (lesions too small), but they saw adenomyosis in my womb. The lining was always at upper end of normal if I had a biopsy when on HRT - but no one ever followed that up, or asked about family history

I also was told it didn’t cause the cancer, but would have fuelled it. They’re never going to admit HRT caused cancer - can you imagine the legal cases?

I also think taking a proper history has gone out the window with Drs. When I graduated (early 90s) we were told that history was 90% of diagnosis. Now I think they just focus on immediate problem and test results. But sometimes you need to also look to the past history to predict future possibilities

Rant over! Can you imagine if I got drunk before a Drs appointment? They wouldn’t know what hit them 🤣

I must admit, that’s been simmering a long time. Was good to get it out

@myrosehasleftme - I haven't found the abemaciclib too hard on my bowels, though I do have to be cautious about too much fibre. I can normally get away without needing to take loperamide and usually only need it once every couple of weeks or so. My sympathies if you're struggling. I was really anxious about that before I started taking it and I know it's really hard for some people. I may just have been lucky and/or this may be a placebo effect, but I read somewhere that fermented foods can help with the diarrhoea. I normally have kefir for breakfast every day, and I feel like my guts are grumpier if I go a couple of days without it.

I hope your surgery goes smoothly.

(PS - I'm a 1973 baby, so just a tiny bit older than you and also stuck with monthly zoladex)

DD has an Oxford University interview offer through this morning, very happy for her, and only 18% interviewed and 5% offers for Economics and Management. She doesn't have Economics A level so I am going to try and dust that bit of brain off as it's my subject but hope it's not 🦤 She's good at interviews.

A lot of us around the same age. I didn't go on hrt mainly as GP is so hard to get hold of here but for once glad of that as had 2 hormone based cancers with no family history. Had already spread to lymph nodes so don't care to think what would have happened if on hrt. Been advised never to use it. And obviously have Tamoxifen as well. Glad swimming is helping so many, that's my hrt replacement.

Had oncology call yesterday and they agreed to stay on Tamoxifen and not switch to letrozole despite slightly higher success rate. Bloods are definitely in menopause but she said she likes 2 years to be sure though it's 1.5 of very definitely in menopause bloods. She said Letrozole has a higher rate of people who can't tolerate and lots of joint pain so she recommended staying on Tamoxifen partly due to DS. Said take for 5 years, ideally 10. And she told me not having mammo last Dec wasn't very sensible which is true but I had chemo and radio until that August and a son in hospital. I also don't want to go back to where had first mammo and found I had cancer, think she found that strange but was in lockdown alone suddenly being told it may be up to stage 4 and definitely cancer and I just feel scared with that place, oncology doesn't bother me. So she is kindly trying another hospital for me. First one said don't do but phoned this morning re second one. I need to stay at that hospital due to reconstruction waitlist. I queried I have lobular and it misses 50% but she was anti MRI and said mammo better and not worth private for MRI.

Still half awake as Floof has been hyper all night. We have Christmas decs up and also had a quickly arranged Thanksgiving dinner which made him super excited. DS ate it all so happy with that.

I don't think the focus on menopause is a bad one overall but I do really hate the one size fits all , you must take HRT its the only answer- and yes the idea that if you don't you will have crumbling bones, heart issues and dementia is very unhelpful. Many friends who have struggled with symptoms haven't found hrt to be the silver bullet they hoped- needs a much more nuanced approach. I was disappointed that the literature for breast cancer rules out a lot of alternative supplements too- my feeling is it's because it's untested rather than showing increased risks- think I need to get drunk and rant at someone too!!

@dotty2 It seems that this is the most common side effect of the Abemaciclib so that's great you have been ok. I'm pretty sure they say if it's going to happen it's within the first couple of months so looks like you have escaped that. I've not had any other effects from it that I can tell and a daily loperamide keeps it mostly under control. I eat a lot of fermented food but also quite high fibre with a lot of pulses which I really don't want to give up!
Talking of which I made the ottolenghi confit chick peas recipe last night as mentioned on another thread on the site. It was lovely and pretty straightforward for his recipes! Lots of oil but definitely no upfs! Highly recommended

@Silkiebunny congratulations to your daughter.

I also queried mammogram follow ups as mine (also lobular) couldn't be seen on the one I had at clinic when I found a lump. My surgeon said that the hormone treatment will change the structure of the breast tissue and therefore it becomes easier to spot post menopause by mammogram.

I love pulses and ate a lot pre-abemaciclib, but have really had to cut back. I can still have a few (e.g. last night had a veggie curry and my portion included a quarter can of chickpeas, and that was OK). I definitely couldn't eat a whole bowl of dal as I would have done previously. My problem is that loperamide works too well and I get constipated and bloated if I take it, so it's a last resort for me. The oncology pharmacist prescribed me some tablets (rather than capsules) so I can break them in half and just take half - they don't come in smaller doses. I've only tried doing that once so far, but it did seem to have a less dramatic effect which was good. That Ottolenghi recipe sounds delicious - maybe I'll try it with a side dish of loperamide! (Sorry - that is probably very boring for everyone else, but it's nice to get this off my chest as it's not something most people want to chat about...)

PS - good luck to your daughter, Silkie. I went to Oxford and my interview is still burned into my memory 33 years later. (It wasn't awful, just a very intense experience.)