Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Squiffy
Nothing dramatic in terms of side-effects. I've only done one and a half cycles. Just more tired and achey and a bit breathless. I tend to have a rough two days shortly after starting a new batch, then perk up a bit. I hadn't fully recovered from surgery and now can't do as much walking as I did before the pills. Nothing like as brutal as chemo for breast or ovarian, but it's the cumulative factor that worries me. 6 months is a long time to be inactive at my stage of life. Never fully recovered my stamina from TAH 5 years ago.

Interested in your genetic testing. V little cancer in my huge extended family, but my aunt had colon cancer in much the same place.

@catnidge (and everyone), thank you for your good wishes- this is an incredibly supportive and caring group, and I'm so grateful for it. My daughter has settled in beautifully now, but I'd say it probably took four or five months. She came here for a visit with one of the carers, who are wonderful. The carer might not come back though, as I showed her my manky tit .

@Nonotmenori, get that vodka down you and sob all you like- it is a Big Deal when your hair has always been such a big feature, I get it.

@Hippiechick162, your mentioning shit reactions of husbands reminded me of something I heard a few weeks ago from a friend. Her partner's Dad heard the news that his wife had cancer and he KILLED HIMSELF the next day . What a stupid, selfish sod! I don't feel like that about most people who take their own lives, but COME ON! Awful.

I meant to shout out to DaisyPond too- I'm so sorry you have to be here. It's a massive shock, I know.

@Thymeout, I think all bowel cancers are supposed to be tested for lynch syndrome. Your GP can refer you for testing.

*@Toofaroutallmylife

I had Carcinoma Insitu diagnosed in 1982 after a Cone Biopsy. I had been told it was a "precancerous stage" but a year later I saw a Locum lady dr who made a point of reading the written diagnosis to me and said it was not a precanerous stage and she believed in telling patients he truth that it was full blown cancer. Actually thinking now I was very calm and said but it had not spread and they had taken all the cancer cells away. She agreed and I changed the subect.
Another year later I emigrated and GP had written it was "Dysplasia grade 4. I was told that here it would take 10 years before spreading outside the womb but in Germany they said it was faster growing than that. I then had a black melanoma diagnosed and was told that it was a similar type of cancer to my cervical one and was CIS grade 4. and caught just in time.
I was amused by the "same as my cervical" as that had also been black, but when I was told the black Melanoma on my arm was due to sun bathing I thought well how the hell did the sun get to my cervix? I certainly never did sideways splits in shoulder hold naked outside .

Now there's an image, digerd .

I should hope not, @digerd.

Interesting, reading back through this thread, how many of you are breast cancer sufferers. It's the vast majority of you. Is this in line with national incidence of female cancers, or is it just on MN? I'm also finding it very interesting how many different types there are.

@Nonotmenori - so sorry it wasn't the news you hoped for, even if you know it gives you the best chances. As others have said, it may not bring the side effects you dread. I hope you are feeling a bit calmer today.

But I totally get what you mean about wanting to get away with it all without anyone knowing. I told no-one at the beginning; didn't want the head tilts and the sympathy, or being defined as a "cancer sufferer". It didn't help that it was a gynae cancer. Like you, I then realised I had no choice, as it is hard to explain away daily treatment. So after a while I made peace with it, and decided to "own" the cancer, but it did take a few weeks to reach that point. And your true friends and family will support you throughout, and won't care even if you do lose your hair.

Indeed digerd. I am scrupulous about checking my moles, but had no idea you could get melanoma on your vulva - I’ve definitely never been sunburnt there!

Looks like you're right, Cointreau.

Hi, just wondered if it's normal to still feel absolutely zonked three days after surgery? I'm getting a good full night's sleep but still crashed out on the sofa all day too!

Absolutely! Your body is expending a LOT of energy on your recovery, and that's before any painkilling drugs etc.

Listen to it, and rest up without guilt if you're able.

peaceanddove
When I had a general anaesthetic recently and being older I said to the surgeon that with all my "co-morbidities" I was not worrying as lying there out for the count was hardly like running a marathon. But he said "Oh, yes it is, actually. It is a real burden on your vitals and indeed I did take a long time to get over it. Short durations as in my Hysteroscopies 20 years ago, of 20 minutes were OK, but the longer you are under the more arduous it is.
You must take it easy and enjoy a well deserved pampering

Thank you @BitofFun. I think I was expecting to bounce back like I did when I was 25. I was thinking of you earlier and wondered if you'd read any of 'Oestrogen Matters' at all? x

Well this will be the closest I ever get to running a marathon @digerd I think I was under for about three hours which is a much longer GA than I've ever had before x

The operation I am having in March is 6 - 8 hours long . I am having it on the Tuesday and have told DH not to fly over until the Friday as I expect to be totally zonked until then .
I am NOT expecting to bounce back from this one !

Toofarout
Vulva cancer is rare I read some years ago when I was worried about a spot on mine. Also from my pelvic rads specifically targeted at my Bladder, I told Oncologist that I had swollen lymph glands on one side of the vulva near the groin/ vagina, but I was aware that they went up amd down and were soft, so assumed were not cancerous . Oddly she said that the rads would not touch my genitals.
I did read recently that the survival rates for breast cancer has risen enormously as well as lung cancer but the bladder cancer has worsened.
.I get my results next week from the biopsies and hope the MRI scan results will be through as well from yesterday.

@Trumpton
My goodness that is a long time, my last one for the biopsies was only 40 minutes and apart from the screamng for a bed pan every few minutes - they pump the bladder full of water to smooth it out during the procedure- it was not too bad.
Good luck with your recovery next month.

Nobody up tonight- sleep well my lovelies. I slept from 10-11pm and couldn't get back to sleep, so felt hungry and got up to eat rhubarb crumble and custard. Still not back to my pre cancer diagnosis +2 ops then 33 sessions of rads weight of 55 kilos and no regain of muscle. Haven't been able to walk a straight line for a long while and when I used to sway/teeter when I was out I would say to people No I'm not drunk it's just my sciatica
Oh well, will try to get back to sleep as obviously 30mg of Codeine did nothing for my back pain or sleep and doing the Highland Fling for even 1 minute is out of the question now
I remember loving the Gay Gordons dance on holidays in the 50s, but my favourite was the Valeta Walz .
Goodnight.

Morning everyone, hope you all got some rest.
The waiting is over and I've been booked in for chemotherapy. @Nonotmenori I've thought about donating my hair too, I've donated to the little princess trust before www.littleprincesses.org.uk/ but my hair won't be quite long enough this time. Perhaps a bird might like mine for its nest. I've told my children and they have advised me to get a blue wig because it will be awesome. I like their style.
Have a good weekend everyone.
Xxx

Joining the new thread register. I was diagnosed with triple negative breast cancer 11 months ago with one or two lymph nodes affected too, and embarked on 16 cycles of chemo, lumpectomy/sentinel node biopsy and lastly radiotherapy that came to an end 6 weeks ago. Being triple negative, there’s no further hormonal treatment so I am done with all treatment now. Luckily the response to chemo was excellent and I am cancer free. I’m 47 and live in London with my husband and twins.

This thread has been enormously supportive to me while I was going through the maelstrom of it all. I feel pretty good now and lucky to get through it all. I hope that all the recent joiners find the same.

Lately I have noticed that my eyelashes and eyebrows, that had grown back beautifully, are all busily falling out again. No one had ever mentioned to me that this would happen! It makes sense that because they all grew at the same time, they’re synchronised in terms of lifespan so all die at the same time. But it’s very annoying and apparently we can expect this to happen again and again until they get out of sync! Anyone else found this?

The other grumble is how achy and creaky my joints are now! Whenever I stand up I am so stiff it’s ridiculous! Apparently this is down to going through the menopause and another recent learning point for me was that HRT is right out for TNBC. I don’t really understand why as this type of cancer grows without the influence of hormones, but apparently it’s a no no.

Hello to the ladies who were my cohort on here over the last year and best wishes to you all. @BitOfFun your story earlier on the thread made me well up too. I do hope the jaw issues can be improved and made more comfortable, it must be wretched.

I’m back to work next week. Feel a bit apprehensive about it, but it has to happen some time!

Have a good weekend all.

@Trumpton
My hemi-colectomy turned into a 5-plus hr surgery due to an unexpected nodule which they had to remove with clear margins. It made my previous TAH feel more like a spa weekend by comparison, but I don't think it was the anaesthetic so much as the nature of the surgery. Drips, drains, feeding tubes and having to leave with a functioning colon rather than the removal of bits of me surplus to requirements.

It's the recovery that takes longer when you're older. The best advice I was given was to rest before an activity as well as after. So don't go out as soon as you're ready. Have a sit-down first. And the same when you get back. Rest as soon as you get through the front door, before you unpack the shopping, put on the kettle, hang up your coat.

Good luck!

Thanks catnidge. Will look into it.

Hi @Brassica your aches joints are classic signs of low oestrogen because your chemo has thrown you into the menopause. It's really not true that you can't take HRT after breast cancer, whether it's triple negative or even positive. I'm heavily reliant on my HRT to keep my awful peri menopausal depression and anxiety at bay, at one point it made me suicidal. It's the only treatment that worked and I tried everything else and spent a small fortune. So I'm doing a lot of research and reading into taking HRT after any gynaecology cancer. I can highly recommend 'Estrogen Matters' by Dr Arum Bluming. Because so many women can now expect to survive BC and live into old age, doctors are keen to improve the quality of life for survivors after treatment ends. No point successfully treating the cancer only to have your patient turn into a decrepit, hobbling old woman like person for the rest of their life.

Many Menopause specialists prescribe HRT to breast cancer survivors if their menopause symptoms are bad. Especially if they take Tamoxifen because somehow the Tamoxifen binds to the receptors in breast tissue but still allows the rest of your body to benefit from the HRT.

Brassica All the best for next week. Don't push yourself too hard.

I haven't noticed the synchronised dropping of eyebrows and eye lashes but neither are as full as they were before. In the case of my eyebrows that is no bad thing as they were getting rather bushy with age. I suppose it makes sense that as they all grew at once they will reach the end of their growing cycle at the same time.

Hi all, sorry I popped onto the last thread and disappeared.

My story is I'm 43 and was diagnosed with triple negative breast cancer in November 2019. I started with a 5cm tumour and pockets of cancerous cells all through my left breast plus lymph nodes. I signed up to a clinical research trial and I'm currently on cycle 3 of 7 cycles of chemotherapy (Carboplatin and weekly paclitaxel, followed by FEC), plus I got allocated the trial drug. All the tests for the trial shows that it's all show contained within the left breast and left armpit. I've also tested BRCA negative. Chemo will be followed by a mastectomy then radiotherapy.

The last couple of weeks have been a rollercoaster and I've asked to be referred for psychotherapy to deal with what's happening to me. The one thing that has really helped is that shaved my hair off and it's given me a real boost. It was so depressing combing handfuls of hair out every day. I get my wig on Tuesday and I'm looking forward to it. I'm still working and I haven't told anyone about my cancer, other than my immediate team and managers, so the wig is something to give me some normality.

@Nonotmenori consider trying the cold cap to preserve your hair, although it might be worth cutting it shorter to make is easier to handle. Cold-capping hasn't worked for me but other ladies on my unit have done really well with it and only had some thinning, which you can only see if you really look for it.

@meercat23 @peaceanddove thanks for your replies.

I’m quite confused about the HRT I must confess! I wouldn’t say I’m suffering with terrible menopause effects - it’s hot flushes and creaky joints as I say - but I was wondering whether we have a sort of window of opportunity to avoid long term damage from the low oestrogen if we get HRT earlier rather than later. Or does that not really happen? (This was why I asked my Facebook TNBC group the question and got an unequivocal shock-horror response that I was asking about HRT! But they didn’t really address whether that leaves us at the mercy of arthritis etc etc, and that’s my concern.) I was told by my surgeon that exercise will help keep mobile but if I might benefit/avoid harm by taking some tablets then I would possibly like to. It’s all quite complicated. Maybe I need to ask for an appointment to discuss.

For ladies just embarking on wig-wearing, I am not wearing mine any more. I have nearly-full bottles of wig shampoo and conditioner (for synthetic wigs), plus a comb, plus three wig stands, plus styling cream. If anyone would like to have any of these, please let me know and I can post to you. I’ll suggest a donation to a cancer charity in return. I was going to donate my (four) wigs to the cancer charity at Guy’s but again if anyone might be interested to have one, let me know by PM and I can give further details.