The Great Cancer Recovery part 3

[TopOfTheCliff]

You may have finished active treatment for cancer, be in remission or NED. You want to look forward not dwell on the past. You know you ought to be eating well, exercising more and picking up the threads of your old life. Join us and share the ups and downs of recovery. We understand!

Here are some resources we found helpful:

The Mountain Lion
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis

Peter Harvey on Psychology of recovery:
https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Resources from Penny Brohn:
https://pennybrohn.org.uk/our-approach/resources/

Breast Cancer Now Moving Forward:
https://breastcancernow.org/information-support/support-you/moving-forward

Get your Oomph Back with Carolyn Garritt
http://www.oomph.london/home.html

Charity providing treats for cancer patients:
https://somethingtolookforwardto.org.uk/

Exercise is good for you:
https://www.webmd.com/cancer/features/exercise-cancer-patients

Any more suggestions? Post them below

There is also a thread for those suspected to have cancer, or newly diagnosed and facing treatment, and also a thread for those with Stage IV cancer who want to talk to others in the same boat.

Thinking of you @Penguinsa and keeping everything crossed it goes ahead today

Your holiday sounds fabulous @TopOfTheCliff I will report back from mine in due course!

And it’s cancelled as I am under endocrinology, they have known that for 2.5 years. Now I will need to choose between job and surgery argh. Devastated.

Holiday sounds great Top.

Oh no, I’m so sorry, that’s terrible. I’m very angry on your behalf

Oh @Penguinsa thats absolutely awful. I’m so sorry.

Hello everyone, it's been a while since I've posted... Was diagnosed July 2023 with a multifocal 50mm, grade 3 IDC, ER 7, PR 5, no nodes. Opted for a single mastectomy, no recon. Due to family history and ethnicity, opted for genetic tested and discovered I have mutations of both BCRA 1 & BRCA 2. Oncotype test returned high score for recurrence, so did 8 cycles of ACT chemo, followed by 5 sessions of accelerated radiation. Declined ET. Due to start Zometa infusions in the autumn. Due to genetics, risk of triple negative, and aesthetics, have decided to have a second RRM. This has been scheduled for September.
Have an appointment for OAFU in October. I guess this means I have now finished active treatment and like you all, part of the great recovery. This is why I felt this thread was more appropriate to post in.

I am still horrible fatigued yet having great difficult getting to sleep. Went through a premature menopause, so thankfully, didn't have to deal with a sudden one bought on by treatment. All in all, things have been going relatively well. Am definitely less angry, more at peace with having cancer, particularly the lack of choice/losing my breast.

However, there's always something, isn't there? As part of pre-RRM stuff, I had to have a mammogram and MRI. It's been 14 months since my last one, and what started this whole breast cancer clusterfuck rolling. I wasn't expecting to hear back after the mammogram/MRI, so have been somewhat thrown when a few days after my MRI, I was called in for an urgent chest CT scan (with contrast). As we all know, surprise scans are hard to handle, more so now I'm having to wait to find out what this is all about. I think I was also taken aback by the speed of it - when they saw spots on my liver during the initial diagnosis last summer, that took a few weeks to organise a liver scan. Am trying to tell myself that they're just being thorough and want to compare/contrast the MRI with the CT scan. However, I am worried that they've spotted something either in my lungs or bones b, more so as I know my risk of recurrence is super high (as noted in my Oncotype results). Has anyone been in a similar situation where they've had further 'surprise' CT scans after an MRI?

Much love to those whom remember me. Am going to catch up on the rest of this thread now.

Thanks Sandwich and Dotty I was expecting a problem but not one they have known about for years and I have had multiple generals since fine.

Hope its nothing DoubleC I think extra scans are quite common.

@doublec that sounds like a curveball, and I understand why you are worried. This isn't what you want to hear, but IME, it really is better not to try to read anything into the scheduling of appointments, the way that follow ups are communicated etc. I have got it wrong in both directions in the past - I have utterly convinced myself there was nothing to worry about (when there absolutely was) and vice versa. So it's really safest to assume nothing - you don't know what it means until they tell you what it means. Is there anyone you could ask for more info? Do you have a breast care nurse you could speak to? It's so hard, isn't it? The whole cancer experience has left me never knowing when to panic. I have spent a lot of the last 10 days convinced I must have liver mets as I've been having a lot of right side pain. Having calmed down a bit, I think it's muscular as it only hurts when I move and I've been doing a lot of front crawl in the pool after a bit of a break from swimming. So I'm no help whatsoever, probably, but solidarity from me.

Wire words @dotty2, wise words. Silly I know, but despite a long history - 30 years - of breast lumps, it never occurred to me one might be cancerous. I was completely caught off guard by my cancer diagnosis, so since then, I guess I've preferred to leap to a somewhat fatalistic conclusion as that way, not am I prepared for not good news, it's a huge relief when the findings are fine. I had a surprise liver CT last year which really made me spiral/question about my own mortality for several days until the all clear came through. Thinking of that, I asked my surgeon if she was ordering any further tests alongside the mammogram and MRI. She assured me no, that's all I needed this time. (For the record, not a single mammogram has ever shown any of the dozen or so lumps I have had since I was 16. And besides, I also know that in that instance, it's an ultrasound they do, not the CT scan.

However, I will take heed of your advice and try not to worry. I did contemplate calling my BCN to ask if the CT scan was precautionary or looking at an area of interest, but given I did similar re. the liver scan, it still made me anxious even when told not to worry. Ha!

So thank you, will not to obsess about it and make my mantra - no news is good news. I guess I just want the next surgery out of the way as then I'm having a risk reducing salpingo-oophorectomy at the end of this year. After that, I want to go on holiday. I really don't want a recurrence fly in the ointment to throw this all off. Most pertinently, I don't really want to figure in more treatment, possibly chemo and lose my hair all over again. I just don't know if I have the fortitude to deal with it all so soon.

Solidarity re. your liver pain and worrying about possible met, have been there too. It's just awful. Even when we're free, supposedly of this wretched disease, we're not actually free from worrying out it.

Thank you @Penguinsa for the reassurance. I sure hope so!

WTAF @Penguinsa - that's appalling. Is it even something that might give rise to a genuine concern? I had a friend who had brain surgery cancelled for three months because the secretary had misinterpreted something. It's shit.

I don't think it will be a genuine concern, it was just one cortisol test of about 10 or so where 9 were normal and 1 was out but its related to stress and it was at the end of chemo / radio and when DS was hospitalised. Plus I ate and drank after as not told not to.

@Penguinsa Good grief! I was excited for you. How can they actually do this on the day of surgery!! Will you reschedule? How long will the wait now be? What rotten timing too with the new job. I guess you will have a lot to think through now.
@doublec These random surprise scans can really throw you. As others have said, don't read anything into it. I have had countless of these surprises since the initial diagnosis, some ending up surgical procedures and biopsies. All clear. And, as a triple negative grade 3 person, my recurrence risk is high.
@TopOfTheCliff your holiday sounds fabulous.
@dotty2 hope you are enjoying your holiday too!

Thanks Isa At the moment looks like it will be new job or op as hospital are being slow but it appeared very chaotic and like everyone was in shock. What's annoying is endo are refusing to see me for 3 weeks then there will be tests then I will be on waitlist again so talking 3 months or so which with recovery period isn't viable. They seemed to be expecting me to say fine. I don't know whether a solution will be found, today they operated on no-one and they seemed to have decided about 7pm last night but for some unknown recent thought it was best to tell me in person today it was cancelled after putting me in gown, socks etc. I have a complaint in now and am pushing them but there's no clear path. I have never seen an endo consultant and they have known an issue since 2021. I had no idea it was serious and tbh don't think it is.

@TopOfTheCliff Sounds like you're having a great break. I'm impressed with your 6 hours a day cycling. I've signed up for some cycling confidence building lessons at the end of August which I'm looking forward to. It's been 30 years since I last rode a bike. If I like it I think I'll buy myself a hybrid bike - I think that's the sort I want, a pedal cycle that will give me some help going up hills.

Thanks for starting this thread.

I will introduce myself, I am 43 and was diagnosed with invasive oestrogen+ breast cancer, a small (5mm) tumour with lots of dcis, after going to the doctor about a lump. They'd caught it early and hopefully just need single mastectomy and immediate reconstruction. This was a relief as my lump was near the armpit, and after mammogram and biopsy had to wait a week, not knowing what it was but that it wasn't normal.

I had the surgery a month later but then there was apparently 3 tumours found with one a bit bigger. Cue an oncotype test and from that 6 sessions ofchemo, which I finished about a month ago and about to have first of 15 radio today (I think so many to save the implant, which they don't normally do before radiotherapy), and also started in tamoxifen today.

I only found out at my radio preparation that the other tumors would have been hidden by the dcis and they didn't just grow in a month, between diagnosis and surgery which is a relief. No family history.

Still trying to come to terms with it emotionally. It wasn't in my radar this time last year. I had the lump but I wasn't concerned about it. You think you're healthy and then bam! Haven't really sought out help , just been getting through it. So this thread is really helpful thanks

Also should say chemo stop my period bit if not will need injections so going through menopause. Thankfully, didn't want any more kids.

Hi @Onelessboob , welcome to one of the most friendly, kindest threads on MN.

I had my diabetes review this morning - GP very happy because my diabetes is, in his words "very well controlled", and my cholesterol has fallen to 2.9". He did remind me though about making an appointment for the dreaded smear test.

Thanks @MissMarplesNiece it's nice to talk to people going through the same kind of thing.

Glad your diabetes is under control.

I’m sorry I’ve not checked in a while and hope that everyone is ok. I will catch up on the chat Friday. I’ve been back in the UK for about a month, I’m loving it. Good weather, I’m out every night, seeing friends day time, travelling to see loads of friends. I’m creative - painting, making shells creations, listening to music, dancing, praying in the sea, crying and drinking tea.

My heart is very full.

I hope everyone is going well. Will read it all Friday. :)

Fairy Wren

Welcome @Onelessboob you are in the right place for the next stage of your recovery. We know how it feels looking at the battered body you are expected to live with after the doctors have finished treating you. Working out how to recover and what you want to do with your life is quite taxing. Be kind to yourself!

@FairyWren7 I am glad you are enjoying the sun and the sea. It sounds just what you need right now.

@MissMarplesNiece well done with the diabetes. I think you are looking for an e- bike which will help you up the hills. They come in many guises but a hybrid is basically a town bike suitable for shopping and commuting with straight handlebars and thick tyres suitable for most surfaces. You can fit a rack or a basket for shopping too. Not all hybrids are electric bikes though. I have a Vista Batribike which I love.
https://ecobikecompany.com/products/batribike-vista-s-step-through-electric-bike

I am getting stronger every day on the road. We are getting to know the others in our group too, they are Dutch and American and very friendly. The only downside is a sore bum, and the quantity of chips at every meal. I am eating lots of salad and saying no as often as I can to extra calories! Just two more cycling days left which has gone by very fast.

Welcome Oneboobless that's very similar to me, now 2.5 years from original diagnosis and life is good again, well apart from cancelled DIEP at 8.02am when told going ahead a 8am on 13th.

But so far 15th is better DD is into Oxford Uni for Economics & Management and the hospital have now given in to my moaning and I am seeing endo today at 12pm.

Glad holiday is going well Top and Fairy

Well done to your DD, @Penguinsa , you must be chuffed.

Hospitals cancelling procedures is so stressful- a friend was due for replacement knee surgery last week. She was all ready, mentally prepared, made arrangements for her teenage children etc when hospital called night before to cancel. She wasn't best pleased.

Congratulations to your DD, @Penguinsa thats brilliant news. And so glad you’ve got an appt today.
@TopOfTheCliff so glad you are having a brilliant holiday.
@FairyWren7 that sounds wonderful. Enjoy every minute.
Two lovely nephews have both got their uni places which is great news! And the afternoon tea was amazing- complete with dry ice!

Thanks MissMarples and Sandwich Yes delighted for DD. Had hospital appointment with endo and it was an error op being cancelled but plastics cannot reschedule as both surgeons on leave. So no surgery for a month then it depends on priority people put in. Not sure its going to be possible with new job and its hard to know what to do re Tamoxifen.

Great news about your DD @Penguinsa - that's one fewer thing to worry about, but that's beyond appalling about the cancellation. Not sure what your tactics might be to get it rescheduled. I asked DD when she watched the DIEP the other week how many surgeons were involved and she said three and one junior doctor, so I can imagine scheduling is complex. Could they outsource it to a private hospital? Not sure whether there's anywhere near you that could do it. Otherwise how feasible would it be to take some time out from your job? Obviously the travel makes it more difficult.

Glad you're having a good time @FairyWren7 - very good for you after all the work-related stress!

Thanks everyone. Congratulations @Penguinsa on DD at Oxford. Sorry to hear about your surgery.

I wanted to ask about exercise with your arm if you've had lymph nodes removed and the risk of lymphoedema? I've had a implant and having radiotherapy, which they normally wouldn't do but they think I would need radio when they did the implant.

I've had one or two lymph nodes out to check it hadn't spread. I was under the impression I would need to do weights to help muscle strength due to early menopause, but my radio leaflet says not to lift heavy shopping with it, which is confusing 🤔

Thanks Sierra Interesting about how many staff involved and does seem there's been an investigation as the lady we saw was on about a statement she had written about how it could not happen again.

I couldn't make it work once I start new job so now its whether they can do it fast enough for me to be able to start new job safely. I wanted 3 months as they recommended but that won't now be possible. There only appears to be the person who does the list working at the moment as surgeons are on holiday and one a parent has died so the Secretary seems to be just making up rules. Its well intentioned but she's giving advice on whether to take Tamoxifen or not and saying other people may bump me from the list which would mean op not possible at all. I do know from her there are no operations at all next 4 weeks and after that (its one a week) no-one is booked in but she thinks I won't be first as all cancer patients are on hold for a month. Though the endo lady thought as it was an error and cancelled twice I would go first. Anyway first possible date if I am first is 17 September. The surgeon was saying I could go out after 4 to 6 weeks but I am not at all sure that is safe, the advice online is for blood clots 6 weeks and nurse said recovery is 3 months and can't carry things until then or swim. Medical facilities aren't great.

I asked about alternative operations or implant but they said implant may not be possible - I had radio and also had skin taken with nipple taken so they said may not be any skin. They also said recovery may be same length and needs to be pre checks and they seem to think won't help but it might be they aren't taking a month off. Its a different waiting list. I don't know if there's just the two teams, no idea. Though at least endo is sorted but still looking very dicey for operation if I want to do job.

Just happy today DD is into Oxford and made some progress. Also did gardening with DH.

Thanks One Exercise there's those set movements for post surgery you can do though I did swimming as the exercises for lymphoedema (never got that) seemed very like swimming strokes. In theory you weren't supposed to swim after radio for a while but I did in a lido and swam a mile after the 1 week and was fine and then continued. I think as long as no open wounds and have the energy and careful its fine. I wouldn't do open water with the governments sewage strategy plus a normal chlorinated pool and careful in changing rooms fine.