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.

@Silkiebunny thats so cute!

Hi everyone 👋 I was on the general cancer thread during chemo for stage 1 bc but stopped following as hit a wall after active chemo and now on mirtazapine which has helped. I fasted during chemo & otherwise ate plant based with very little meat which I found really helpful as I didn’t encounter any of the awful after effects my Onco advised me to expect. No idea where I summoned the willpower to fast from as I then developed a sugar addiction, possibly due to the mirtazapine & tamoxifen! Anyways, a few weeks ago I thought enough is enough as I’d put on 10 kilos in 7 months and started again eating plant based with no meat/dairy and loads of fibre in the form of whole grains. Not counting calories, just ensuring I get my Daily Dozen (a free app by Dr Greger of nutritionfacts.org). My energy has returned and I’m noticing lots of benefits overall with (so far) no sugar cravings ! Since treatment ended I’ve started sailing, aiming for 10000 steps a day with the dog and gym. We go skiing for the first time soon.

I second whoever recommended the turtle dove wrist warmers, they are fantastic. I got some on Vinted and use them all the time. Much better than gloves. I forgot (I do that so much these days…!) I’m 46 and the one year cancer cloud aged me about 10 years, putting me into perimenopause, so I’ve booked a neck & face lift in Feb 24 with a very talented cosmetic surgeon in Bristol to restore a little of what cancer took !

I am still very conflicted about taking Tamoxifen. My surgeon and BC nurses kept banging on about how Tamoxifen could reduce my risk of reoccurrence by 50%. So it seemed a no brainer to take it. Until I did my own research and discovered the 50% was actually only the difference between 0.5% and 1%. So for me, taking Tamoxifen only lessened my chance of reoccurrence by 0.5%! So suffering all the side effects and potential lifelong damage to my heart and bones + increased risk of stroke, for a tiny 0.5% benefit. Dangerously misleading information from HCPs (my surgeon very reluctantly admitted my research was correct).

Must admit I'm gutted that the weight hasn't just dropped off like it did before when I had a break from Tamoxifen.

@Bookist only 0.5 % that’s incredibly small for all the side effects and risk associated with taking tamoxifen. May I ask you what sources you used to come to this % ?

You can get stats on Tamoxifen on the Predict Breast https://breast.predict.nhs.uk/ if you put your data. Though when it says benefits that means being alive so people who are at stage 4 aren't in the data unless they die. Though I counter that by looking at the 10 or 15 year rates rather than the 5 year rates. Hospital uses 10 year rates. The DCIS/LCIS is if you had that only, then its age at diagnosis and whether pre or post meno at diagnosis and the ki thing you put unknown. I always find it a bit tricky as I had 2 cancers of same type in same breast and never know whether to add them or just do biggest - oncologist said its normally biggest but sometimes they add so I do both.

My oncologist has said I can stop at 5 years rather than 10 if I want. I will see, hate the appearance effects on neck but I don't think there's any adverse effect on heart as was almost at post-menopause when took it. There is a blood clot risk but feel I balance that with increased exercise and for surgery they take you off it first. Bones are at oestopenia but don't seem worse with Tamoxifen though dentist was saying you must take it but its very bad for teeth so it might be doing bones though think that's more the AIs that damage bones. My teeth have also been OK so far with higher fluoride toothpaste he prescribes. I am worried about ovarian cancer risk doubling if take for more than 5 years and my added benefit from 5 to 10 years is 1.5% (at 15 years).

I did find weight dropped off fast first 4 weeks was off Tamoxifen, was cutting 500 calories a day so should have lost 4lbs and lost 4kgs. Then I ate normal calories and couldn't exercise some of the following 2 weeks as very bad cold and weight was stable. Since going on Tamoxifen again the fluid is back in the neck but I can still lose weight if I go 500 calories down a day but its tough going on days I don't swim. Swimming days its fine. Weight loss is roughly proportional to calories now. I have also tried to reduce sugar though when I cut it a lot I got very shaky and felt quite ill so now I have a bit. But it does make you hungry. I probably need to do housework or something to burn calories on the non swimming days but meh or take it slower but that is depressing on length. I am only achieving 500 calorie deficit about 4 days a week now. Lovely Christmas type food and miserable weather and darkness is not helping but happy enough with progress.

Witch Have a wonderful time skiing.

I've ordered some Turtle Dove wrist warmers.

@Bookist I agree with you on the stats. The benefits of giving up alcohol are around 15 % reduction in risk of death, 150 minutes exercise a week is around 42 percent reduction, and being a healthy weight is another reduction, so if the tamoxifen at a measly 0.5 percent prevents you from exercising and losing weight then it’s not worth while.

I have managed a lovely sunny 25 mile ebike ride with my friends and a yoga class today and still have enough energy left for a committee meeting. The energy is definitely coming back even though my fingerprints are still absent. It’s so hard to be patient!
I now have a date for my hip surgery from a very apologetic orthopaedic secretary. Annoyingly it isn’t until 26th January so I will have to recover fast in time for DMs 90th birthday on 4th Feb. Why can’t anything go smoothly? Now I just need the pre op assessment and the CT scan rebooking. I shall be heartily glad when all this is behind me.

I'm sorry but I can't remember the exact articles I read, but they all appeared in well regarded journals. I also used the Predict tool.

@TopOfTheCliff sounds like you have another hopefully smaller hurdle to get over and then fingers crossed plain sailing.

Does the 150 minutes exercise needs to be of a certain intensity?

I’m doing a lot of walking probably about 280 minutes of slowish walking (because the dog sniffs a lot).
I’m now doing about 120 minutes or so of swimming.

Does this sound like enough?

As I get fitter I’m going to try and introduce some cardio/weights. Yoga was great but my knee didn’t like it so I’m going to build up to it.

The knee, hip, leg, siatica seems to be waning. I’m taking ibuprofen daily and hoping that, that and getting used to swimming again will help.

@Witchinawell I fasted for chemo too and also missed most of the side effects! I was able to eat completely normally the rest of the time so I didn't really lose any weight. And I turned down pelvic radiotherapy @bookist because it only made 1-2% absolute difference to risk of recurrence and had no effect at all on overall survival but I thought I could end up with bladder or bowel complications that could stop me exercising. Although actually when I read the medical journals, it wasn't even recommended for my stage and grade.

I am up north in a hotel to visit my DD for a couple of days, though I'm going home today, I feel like I could quite happily live in this hotel! It's so nice just to have a break from everything, I brought my laptop and was going to do some work, but I haven't managed to yet, but I might head out to a café in a minute just to check emails. It has made me realise how exhausted I am from just carrying on with everything. I really don't want to go home, but I've got meetings tomorrow.

@Silkiebunny Thank you for the link. Weightloss in December is tricky ! Is tamoxifen causing you fluid retention? Tamoxifen & Menopause & the stress of C have left my neck & face very saggy. My body seems to be coping alright but I had terrible vaginal dryness and non stop itching and infections. My onco gave me the green light for a topical hrt which has really helped. @FairyWren7 there is an exhilarating high you can get from weightlifting. I don’t lift huge weights but even just using the leg press regularly is really toning and you see & feel the results after just a few weeks.

@SierraSapphire we moved to the North West, near the Coast from Essex to be close to family after the pandemic, I miss being able to hop on the train into London for a day out but apart from that really love it up here. I have no idea where I summoned the willpower for those 3 day chemo fasts, I then shortened them to 48 hours as I had weekly chemo but they really helped. I’m glad you had the same experience. My oncologist was supportive, but mentioned not to drink too much water as she once had a patient who fasted and drank so much water to flush her system that she developed severe hyponatremia.

@FairyWren7 I’ve been seeing an exercise physiologist who has written me a program I can do at home with weights and resistance bands. I was having trouble with my knee so she just changed some of the exercises and I can do all of them now without pain.

@Witchinawell I’ve never heard of fasting through chemo before? No-one suggested it to me here. I used to not want to eat breakfast on chemo day but the day before I probably had a bit more.

Was it suggested to you? I had little advice on diet at all.

@FairyWren7 no one suggested it to me. I researched what I could do to help myself during treatment as I was scared shitless of chemo, however there aren’t many studies out there unsurprisingly as no one can make much money out of fasting. The research patients of this study had the same early stage cancer that I had so I went from here. As mentioned previously, I really admire Dr Greger’s work from the non profit website nutritionfacts.org, he has also discusses the effects of fasting during chemo on one of his videos.

@Witchinawell im thinking weights in the new year. It’s supposed to help with bone density I think. I’m the same age as you, 46 and experiencing a lot of the same stuff. Bad memory etc. Sounds like you live near Bristol?

@Silkiebunny did you find a solution to the sugar cravings? I’m getting exactly the same issue. The day after swimming I just keep wanting to eat. Had a sensible salad and fruit for lunch today but by the time I got home I was just craving sugar.

I think for me this is the hardest thing. Does anyone know the stats on sugar intake? We eat well in terms of meals, lots of lean meat, veg and fruit. But I think sugar intake might balance it out a bit.

Answered my own question. It’s not the sugar. It’s the fact sugar can cause obesity.

@Witchinawell my oncologist wasn't supportive, he just rolled his eyes basically, and told me that I would need to eat all I could. I did 48 hours before and 24 after. My chemo was every three weeks though, which made it easier, although the first time I'd done the fast, which actually was longer than 48 hours, I turned up to the hospital to be told that there had been a mistake, and they had not got my chemo ready, I was pretty much hysterical because my whole diagnosis and treatment plan was a complete and utter mess, and this was the last straw! The after was the hardest. I would count down the seconds until I could go out to my favourite café and have lunch, whatever time my chemo had finished the day before! I'm in Manchester now. I did live in London for years, now in a market town, which I love in its way, but I am really enjoying being in the city!

@FairyWren7 I also just did my own research, but I had read this article in the Guardian, never thinking I'd need it, that I've shared on previous threads and that had obviously lodged in my brain somewhere! www.theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-cancer-treatment

I think sugar and inflammation can also be an issue, and there certainly a link between insulin resistance (which can happen without obesity) and endometrial cancer, not sure about other cancers but presume it's not the only one @FairyWren7

@Witchinawell I am in awe of your willpower fasting for 72 hours. I would be so wrecked! I was encourage to keep hydrated and eat whatever I fancied during chemo which was fine except I put on weight relentlessly. Now I am on the Zoe project I have lost my sweet tooth and am quite happy to give up sugar but have snacks of nuts of olives instead. The food that suits my gut biome is delicious and my waist has gone down 14cm although I haven’t lost much weight. ( loved @Silkiebunny story about Floof and the scales!)
I think it maybe because I am converting it back to muscle. I certainly look much better than the shapeless sack of lard I was at the end from October! Energy levels are booming too. I am beginning to feel like myself again. Interestingly it is possible to Zoe up a Christmas dinner and leave out the poor scoring bits and still have a nice meal ( no potatoes or processed meat ie pigs in blankets) Turkey with tons of veg.

Off to the gym now. Go me! Tomorrow will be a rest day.

I'm pleased to hear you are still managing weight loss on Tamoxifen, but I know what you mean about it being so much harder. I'm confused because a couple of years ago I managed to lose a stone quite easily when I had a break from Tamoxifen. But this time I can't seem to shift even a few pounds? I had a nasty virus last week and barely ate for 3 days and didn't lose a single ounce! It's soul destroying!

@SierraSapphire what a great article, wish I'd had that knowledge before chemo (though the willpower may have been another thing- hats off to you and @Witchinawell). Instead I was encouraged to eat more during chemo as I would need extra calories and looked forward to easily losing the weight gained during operation inactivity. Only afterwards I read this is true of many cancer chemo regimes but not breast and most women put on weight then followed up by hormone treatment it's all working against us!
I've managed to lose some of this weight and get the activity going though this is a bit on hold post operatively (ovaries are gone!) I can manage a walk but weights and yoga out until the new year.