Cancer Support thread #78 - Newbies welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

I’m reading the comments about people being told they were young to get ovarian cancer with interest as others in teal life that I know who have it are aged 40 to 50 and the people I’ve come across on forums are as right across the age groups.

@Anne1958 I have never come across anyone in real life or even heard of a friend of a friend who has had OC. I read that the average GP sees one case every 5 years which seems very rare to me. Perhaps the GPs on here could tell me if this sounds right please?

Fizzy, it’s the most common gynae cancer where I live and amongst the people I know who have it or had it is the little girl of a family acquaintance who was born with it.

Then there is my sister in law who lives on the other side of the world and is stage 4.

I’m a lurker. I’m awaiting diagnosis after tests were ran on a breast lump (bloody fluid was tested) in February and I go back for a biopsy mid March. I am scared beyond belief and have spent two weekends barely being able to do normal life for my DD7. I also am struggling to get information from the hospital so have gone down the google black hole which has resulted in complete breakdowns.
Bizarrely it’s this thread(s) which have helped me.

Hi all,
I am 41 awaiting biopsy results from a lump in my breast and lymph node. My appointment is 17th March which feels like a lifetime away. For added fun, dh (40) has stage 4 bowel cancer and has already outlived his life expectancy, currently waiting on results of his last scan.

My emotions are all over the place, today I'm feeling that there has to be such a small chance of it being cancer, what's the likelihood of both me and dh having it at the same time and so young. Yesterday I was feeling like the world was ending.

Welcome @Delamero, pleased we have been some help. It really is the worst time.

I spoke to my oncologist tonight and I wanted to scream. She’s a bit of a drip and I need someone more robust. There is no chance of an earlier surgery date with the original surgeon and she doesn’t want to give neoadjuvant chemo before surgery. I’d be twiddling my thumbs for months. I’m also sure she wants rid of me because I ask why all the time and want her to justify decisions.

How frustrating MrsPNut. Can you change surgeons?
I had my first NHS oncology meeting today. Lots and lots of people. Everyone was lovely but it was all a bit chaotic. I had to remind them that I was supposed to have blood work done.
The consultant seemed a bit stressed and wasn't present for long. I'm a vet IRL and my interest is oncology so I think I terrified the registrar. She was determinedly up beat and positive but I wanted the real, gritty facts.
I'm eligible for the Interlace trial. Has anyone got any experience? It might add 6 extra weeks of chemo to my treatment schedule but I just want to blast the fuck out of the diabolical mess that is my cervix. I also feel a strange sense of responsibility to take part.
Anyway, radiotherapy planning CT on Friday. Luckily I can nip out for it on my lunch break. The hospital is only around the corner from work.

@BadEyeBri I have a second opinion on Tuesday with a surgeon who can probably get me in sooner. I will have to change oncologists if I change surgeon but may transfer back to the NHS.

No experience of the trial, is your tumour squamous cell or adinocarcinoma?

Hello and fond wishes to everybody, old and new! I'm 47, two adult daughters who've flown the nest, a very darling husband and spaniel at home. I was diagnosed with Stage 4 ER+ HER-
Inflammatory Breast Cancer in Oct/Nov 2018, and I've recently been told that my treatment is no longer working, as tumours have progressed past my bones into my brain and liver. I've agreed to try a "well-tolerated" chemotherapy tablet, but I've rejected radiotherapy to my brain- apparently it makes all your hair fall out (and I've kept mine so far) and you feel dreadful. I'd try it if it cured me, but I'm not interested in wasting my last few months looking and feeling shite.

I had the most dreadful migraines last week, and was scared it was the brain mets, but it turns out to have been my own fault for trying to come off steroids too quickly! So I don't feel quite so hideous now.

I've actually felt pretty well the last three or four weeks- I can walk unaided for short distances, and even managed a quick shag recently .

I had to go into the cancer centre to sign the consent for chemo with my onco, but his clinic was running two hours behind, so I fucked that off and came home.

I have a close friend visiting tomorrow afternoon, and others on Friday (all tested and isolated!), so I'm looking forward to some laughs to make up for last weekend's vomiting and stabbing eyeball pain!

Thinking of @InOtterNews and hoping against hope .

Welcome @Lunificent and @Delamero we will hold your hands while you await results.

I'm 51 and after finding a lump in my right boob in November I was diagnosed with triple negative Invasive Ductal Breast Cancer and at the moment it hasn't spread to my lymph nodes despite many MRI's, CT's and biopsies. I have 3 children 11, 14 and 17 and my world fell apart when I got the news alone as DH wasn't allowed in. I started my weekly chemo in January and have 6 more to go including 3 weekly EC. My nurse rang today and said I'll get an ultrasound in 3 weeks so at least I'll know if the chemo is working. Will have an operation after all the chemo followed by radiation. 2nd PICC fitted today, blood transfusion yesterday and all seems to be running smoothly. My brother and SIL who won't have anything to do with me have been in touch, happy days. 

Again, a shout out to @InOtterNews. So hoping to hear from her.

I really feel after all this I need to have a change of career and give something back to our fabulous NHS.

HC x

I'm SCC PNut

@BitOfFun so glad to hear your migraine is gone. Wishing you a fabulous time with your friends.
Also v jealous re shag. I seem to have had most things except DH in my fouff recently

@BitOfFun A shag! I salute you!

Me neither @BadEyeBri, poor man is desperate 😭

@Anne1958 so sorry to hear about your sister in law

@Delamero welcome to the nicest thread on the internet with the loveliest ladies. So sorry you find yourself here. I googled madly when cancer was first suggested to me and it scared me silly. It's best to stick to Macmillan or the Cancer Research site or ask on here, someone can always suggest something or point you in the right direction xxx

@BitOfFun a shag! You go girl!

Hello!

Intro bit: I found a lump in my breast last August and after much to-ing and fro-ing and two operations it was discovered that I had invasive breast cancer which had spread to my sentinel node and no further (although they took out 36 of the buggers). I am having adjuvant EC chemo and I am on cycle four of six, to be followed by radiotherapy and hormone treatment. I am 45, have a DS8 and a DH who is being v supportive.

Sorry to have been absent for a few days - I got very down about having my PICC removed and then being unable to reinsert it. I'm feeling a bit better about it now, though, and have decided to have another go, so they're going to attempt an insertion on 11th, the day before cycle five.

The talk of fatigue really interests me as all the way through I have been wondering how much of what I feel is in my head. I feel like I should be able to do more - but some days I have just napped constantly. Interestingly, this week I have had more energy than I've had in ages, and I managed to do some weeding and go for longer walks. I definitely feel better for it, so will try to keep it up. I feel so depressed about my weight - I have just piled it on and now I feel like a big, bald potato! Hoping some exercise might help to shift it. Have also signed up to SafeFit and am (unrealistically) pinning all my hopes on that.

Sending much love and good wishes to everyone and especially fellow chemo companions. We are over the hump and the end is in sight!

Also wanted to wave at @BitOfFun and offer sympathy for the migraine - sounds horrendous. I used to get them v badly and found drinking coke gave some slight temporary relief - apparently the caffeine widens your blood vessels to your brain or something. Anyway, hopefully you won't need to try that out as it won't come back! V impressed/envious about the shag, too! 😉

So glad you are feeling better @BitOfFun. And managing some
exercise!.
I am with everyone on the fatigue. My hb is low so obviously that affects things but I do think for me some is definitely mental. I do feel better after a walk and fresh air but since the shock of Monday and trying to process all thats to come I find myself sat on the sofa for long periods and just cant move.
Overdid it a bit yesterday as had a walk with a friend in the morning then another took me to M and S in the afternoon to buy loads of new pjs suitable for a hickman line oh and 10 pairs of new knickers! So am just about ready if I get the call to go in soon.

Hi everyone. I'm only an occasional contributor now - and long may that last. Regular monitoring post treatment. Just pop in when I think I can help.

Mucinous Borderline ovarian tumour 6 years ago. Not cancer, but can recur as malignant in a small number of cases. Still being monitored for that, which was incredibly lucky because routine scan in 2019 picked up a Stage 2 colon cancer I had no idea about. No mets, clear nodes, but grade 3 tumour.

Surgery to remove half my colon, followed by oral chemo which ended early because of Covid, but NED in November.

Doing fine, but a bit disappointed I haven't made as much progress this year as I'd hoped. Feeling my age, 79, for the first time ever. Lockdown has made me lazy. Live on my own, and like it that way. Three grown-up children, 5 gdcs.

I'm a Pollyanna. Not energetic enough to be a Tigger. More - 'every cloud... ' This thread has taught me not to begin sentences with 'Well, at least...' Sometimes people just need someone to agree that 'Yes - cancer is shit' with no 'But's...'

Fizzyorange OC is supposed to be a rare cancer, I always knew I was an unlucky person.! I think thats why it doesnt have a very high profile unlike breast cancer, and apparently some of the drugs used have not changed in 40 years . Judging by the amount of people on the OC forum it cant be that rare

Thank you all for the lovely warm welcome x

My poor DH hasn’t got a look in since this whole journey started. He thinks it might fall off!

@Delamero that made me chuckle. DH is worried about penis atrophy 😆 and is suggesting all manner of exotic notions.

(In a comedy, non pressured way just incase anyone is worried.)

@BadEyeBri I have a background that includes some oncology and while my surgeon seemed happy about that (and became brutally frank ) my oncologist seemed less so.

I understand things are frantic. But I do feel I am barely on her radar. As often as not, our scheduled consults turn out to be with some other random person. I've also learned to keep on top of what tests need ordering. I do feel a bit childish and ungrateful saying this - but I do feel there absolutely super-minimal time and attention - and it stems from my oncologist in particular.

I really liked my surgeon but he is now shielding and I don't know what that means going forward and makes me anxious.

@AlbertCampion I too would be down about the PICC saga - these processes do get to me especially when they don't go to plan. With my baldy head and port, I look like a flabby Borg. The only up side of the constant EC nausea is falling out of love with food and hoping I might actually lose some weight.

@Alittlewornout I bought an M & S top with some front buttoning to accommodate my port (which is like Hickman line). Then a PJ top in the sales online for surgery - but it has these really fiddly covered buttons - problem with shopping online. I think I'll treat myself to a day at M & S in person. New knickers would be good too

@Delamero No googling!

@loubieloo4 Often think of you lou. That is an awfully long time to wait for biopsy results and I'm still hoping they are clear.

Ladies can I have your advice on head coverings for when the inevitable hair loss happens? I am really little, not quite 5ft with a small head. Any online recommendations would be appreciated. I have had a look but got quite confused and if I am honest weepy. In the scheme of things its the least of my worries.

SImply Wigs are good, and there are various sites that do turbans,.etc.
cant remember who I used now, someone will have ideas.

@Alittlewornout A friend of mine recommended bamboo hats - I'm in Canada and ordered from (I think) headcovers.com, but she got hers in the UK. They're super soft and easy!

I also like using scarves wrapped up turban-style. Gives an impression of a bit of volume and shape, and I've become pretty quick at tying them (scarves which are large but thin/gauzy are best, so they don't feel super heavy).

As for wigs, a few people I know who ordered them never really ended up wearing them. I've bought two cheapie ones - one is my natural colour and one is silver, for fun! - but in two months of having no hair I haven't worn them at all so far. Easier just to stick with beanies and toques. I think it's because anyone who knows me will know that they're fake, so I feel a bit dumb trying to pretend? I may feel different when the weather warms up, though, and I can't wear a toque everywhere!