Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Great news Flying - congratulations

Flying it’s not insensitive at all. It’s always nice to have good news :) and it’s somewhere you can celebrate but where we understand that it’s sometimes more complicated than just “yay, treatment is over”. I’m sorry DH hasn’t recognised it. Do you think he feels wobbly about it all too? The cathedral performance sounds intriguing - enjoy!

for anyone who needs it

My UTI seems to have cleared up. Phew.

I think he is a bit wobbly about his recital. He has been fab the whole way through but obviously distant from the radio as he has been working because daft him taking time off to come with me so I think it's just not so real to him. He has had to put up with me lying on the settee being to exhausted and nauseous to do much in the evenings.

Good morning all

I'm a 'new' oldie to the thread, I was on here in the summer of 2014 when I was diagnosed with stage 3 breast cancer and the wonderful ladies of the Tamoxigang (as it was!) held me together while I ranted and screamed through diagnosis and treatment.

I'm back on the advice of LeslieKnope (waves) as my cancer is back and it's now in bone, liver and a tiny smidge in one lung too. I've recently moved to Europe which as it turns out is a good thing as the hospital here is running a trial of Palbociclib which is what I need to be on but which is not yet available on the NHS. however to get onto the trial I need to have an oopherectomy to make me fully menopausal (honestly, it's just the gift that keeps on giving) so I'm up way too early and fretting about today's meeting with the surgeon. Has anyone else had this operation? They're doing it via laporoscopy, so just small incisions but they are also going to biopsy my liver while I am under GA. For anyone who has experience of this, what sort of recovery might I be looking at?

I'm 40 years old and have a DH and 2 kids aged 6 & 9, so this is very very hard on all of us. Though perhaps the strangest thing is that I have no symptoms whatsoever yet, for which I am of course extremely grateful and hope will last for as long as possible.

Anyway, thanks for letting me rejoin and introduce myself. Hope you're all having decent weeks and much love to everyone waiting for results or just getting their heads around treatment. Even from my awful position of knowing I have a terminal illness, nothing will ever be as bad as those first few weeks.

Glad you're feeling better Leslie. Congratulations to Flying - it's always nice to have good news and I'm sorry no-one celebrated with you. Hope your fancy new shoes help a bit! El Porto I'm so sorry you have to be back here. Good luck with your surgeon. I had a bilateral oophorectomy (with full hysterectomy) and a bit of melon-balling of my liver plus a few other bits and bobs when I was first diagnosed. So not exactly the same, but I just wanted to say that even with all of that I was only in surgery for 4 hours and they managed pain really well afterwards. I had to stay in hospital for a bit because they'd messed with a few digestive pipes and I couldn't stop puking, but had it just been the gynae part, they reckoned I'd have been home in a few days. So hopefully it'll go really smoothly and you'll be back on your feet very soon. All the best x

Hi elporto, I remember you well and my heart sank a little when I saw your name as I felt it was going to be bad news. I'm so sorry you're back, I remember you flying off to Australia almost the minute you were off the operating table last time.

I've not been a regular poster for some time now but strangely have a gynae appt myself today. I'm supposed to be post menopausal and am on the appropriate cancer drugs for that but recently have had bleeding so I'm off for yet another hysteroscopy. It's quite possible they'll suggest whipping it all out as I know they're looking for endometrial cancer. I have a dull low ache constantly now as if a period is about to start.

Good luck with your appt goes well and as always the advice is that so much can be done now to treat the spread.

elportodelgato I had a laprascopic bilateral oopherectomy back in July - it was the histology from that op that led to me having a total hysterectomy and omentectomy 3 weeks ago.

The first op was done as a day case, i went to the hospital in the morning, saw the anaesthestist and the surgeon and then waited with all the other day case patients. Surgery took just short of an hour and a half and then I went to the recovery ward/area to wait until i got the all clear to go. I was last to be discharged that evening as I was sick following the GA. I had 2 weeks off work which was plenty.

Hope your op goes well and sorry that you find yourself back here.

mrsrhod good luck today I hope they can put your mind at rest. And I hope they are apologetic about all the delays and hoop-jumping you’ve had while waiting for the appointment!

Flying good luck to DH I missed the bit about your shoes. I hope they cheer you up. I love sparkly shoes and have quite a collection of gold ones

elporto welcome back, though sorry you’ve had to rejoin us I hope today’s appointment goes well. And that’s excellent news about the trial drug. Do you have good support where you live?

Thinking of all those who need it

Back from gynaecology and feeling a bit crampy after the biopsies. They didn't see anything alarming but results will be back for their mtd meeting next week then hopefully a follow up appt next Friday. It's looking like a hysterectomy will be the preferred route so I'll be asking questions to anyone who's been through that. Bugger.

How's everyone else doing today?

Hello everyone!
Day 8, cycle 6, so Taxol only today. I especially like the nurse I had last week and this (I like all of them actually) because she puts the cannula in my wrist rather than my hand, which I find a lot easier. I'm always convinced the needles is going to pop out of my skin when it's on my hand, and I end up keeping it really rigid.

Amy got me in and out really quickly today. All hooked up well before nine, and I got the 11.48 train back home. It was flippin' cold today though. Worse than usual.

Leslie in answer to your question, it's 18 treatments from when I first started, which was back in April. I've calculated that I should be finished on the Bevacizumab on July 11th so I may start planning a holiday! . Though I think need a warm-up holiday first.... because this has been going on since Feb I haven't been anywhere and I need to!

Scan on 24th Nov. I don't know what my last CA125 marker was - I missed the doctor's call today. She has said she will call again tomorrow so I'm keeping my fingers crossed.

Hi everyone, I've been lurking on this thread since June when I had my first routine mammogram and cancer was found.

What I'd like to know is if anyone has had success using a cold cap. I've looked on various cancer help websites and you really seem to get a lot of 'it didn't work' type of comments. Is this just because people tend to only to leave negative comments rather than positive ones.

I'm looking at having FEC chemo and would love some positive info about the cold cap if possible.

mrshrod I’m glad they didn’t see anything alarming but I will have my fingers firmly crossed for you until next Friday

Twitter perhaps a bit too soon for me to start an official countdown then, but it’s good to have an approximate end date in sight. A holiday sounds an excellent idea. Any destinations in mind? Yay for good nurse and cannula placement. I hate elbow ones as you can’t move your whole arm.

Iseeall welcome out of hiding :) sorry about your diagnosis. I haven’t cold capped, but there have definitely been some successes.

If you look at posts by rocket74 on thread 57 and thread 58 she has posted some photos of her hair. I’ve seen her since and it looks amazing. You’d never know she’d had chemo!

Iseeall my onc nurses are sceptical privately but hugely supportive publicly. Tbh, I don't think it matters what anyone else thinks or what others' experiences are. The point is, if it makes YOU feel better you should do it! No-one can tell you whether or not it will work for you, or how much hair loss (there's always some apparently) you will have.

I think I am unusual in that my hair loss hasn't bothered me at all. It grew back when I had a 3-month chemo break for surgery, but now it's going again. I know it will come back. It's rather chilly round the neck but a scarf sorts that out. Apparently I rock the Judi Dench look too, so I'm going minimal when I have enough hair to do that!

Hi Israeli.. ..as far as I understand it does depend on your hair type.. .friend of mine went private and was encouraged to try but her hair was thick and curly and didn't work. When my surgeon thought I might need chemo she took one look at my mop and told me not to bother....my hair is stupidly unruly ..!! But some people have great results....i think your nurses will have an inkling so ask them to.tell you.. ... !!! Good luck with everything....xxxxx

Wombat good luck today I’m thinking of you

Waving to everyone else

I think I am developing mucositis again so I am eating a medicinal ice lolly :)

Hi Leslie. The hospital have said that they are not able to fully diagnose what the lung cavity is. To remove it, they would have to remove half of my lung and they want to try and avoid that if poss. I will need to have a bronchoscopy where they will try and take some samples. They say it is quite rare.
Unfortunately the PET CT scan has shown a swelling/lump in muscles in my pelvis. Best case is that it is a lipoma, worst case it is a sarcoma. They have made a referral to the sarcoma team.
So more tests and more waiting.

Well husband has well and truly come up trumps with super room (huge, ginormous bed so haven't got snoring in my ear) and has just bought me the nicest jacket ever. He doesn't ever say anything but I suppose actions speak louder than words and I've no time for those who talk the talk but don't walk the walk. His recital went well so he is happy. Treated myself to new handbag. Crikey, this 'I've finished radiotherapy lark' is costing me a bomb. Must stop soon.

Sending 💐💐💐💐💐💐 to all ladies living with Our Little Visitor or after effects of OLV treatment.

Hello lacies.
Leslie, let me.I. on.your stash of "medicinal" ice lollies..and especially if they also serve to numb the mind!
flying you deserve to celebrate and be happy you've finished rads. Great news indeed.
mrs phew for there being nothing alarming..I think if a hysterectomy will do the thing it is worth considering, though nobody likes to go under the knife. I hope the info you get tomorrow is even more reassuring.
elporto I'm so sorry you've had to rejoin us, but great that you'll be in that trial. I totally understand what you said re not having symptoms..it's just so damn cruel.
As for me..my biopsy is on Monday morning. I've kept myself soooooo busy it was almost like "normal" but now I'm fretting and I HATE the whole pink October thing..I know and get the wisdom behind it, but fir people like me, it acts like this massive neon sign dangling in front of my eyes: ooooh cancer..ooooh cancer.
Anybody else getting fed up of the pink parade?
Ok..rant sort of over

Oh no Wombat I’m sorry they couldn’t give you any definite answers and have given you more to worry about! I hope you hear from the sarcoma team quickly. Do you know when they’ll do your bronchoscopy?

Flying well done DH :) enjoy your break and post-radiotherapy treats!

Cross posted royal

I think you might need something stronger than ice lollies

Fingers crossed for Monday. You’ve been waiting aaaaages.

I think pink October is very tacky. And I don’t really know anyone with breast cancer who likes it

Just coming in quickly to talk cold caps for iseeall. I've had some steroids today so probably best I wait until I'm more thoughtful to discuss the pros and cons of pink everything, as someone whose cancer is 'teal'. I had the cold cap first for carbo taxol frontline; the cold caps were kept in the freezer and swapped every 15 mins and my barnet was springy and massive. The oncologist was sceptical but we gave it a go and it didn't work - all my hair fell out by day 16. For secondline I had Gem Carbo and although I lost about 30% of my new hair, it didn't show at all and I didn't need the cold cap. Now, I'm having weekly Taxol and I have been doing the cold cap for 9 weeks. I now have a unit by my chair which keeps the temp consistently low, we scrape my hair down using water and conditioner and the outer cap fits much better due to special clips that clamp it to your scalp better. It's not comfortable but it's better. My hair was thinner/finer to begin with than when i started frontline. So I'm 9 weeks in and although my hair is much thinner than I'm used to, it still looks 'normal' and you wouldn't know I was having chemo if you didn't know me before. No baldy patches or anything - just thinner and finer. My kids joke that I now have a 'puny tail' rather than a pony tail!! I'm glad I gave it a go. No harm in trying. As I say, it's a bit of a brain freeze but the first 15 mins are the worst and you do get used to it. Hope that helps.

Thank you all for the cold cap info. I would love to hear more positive stories as I think it is something I will try if I do have to have chemo..

Briefly, my story is , lump found in June, chest x ray showed 'bulges' so I had a CT scan that was inconclusive. My MDT liaised with chest specialist and I had a lung biopsy. Finally diagnosed with Scardoisis but given the go ahead for my cancer treatment. I've had a lumpectomy and sentinal lymph node biopsy. Everything was removed and nothing had spread(27mm tumour) but my cancer was a grade 3 and according to my Oncologist it falls into a grey area. Chemo is recommended if I want it (followed by radiotherapy and oestrogen therapy)
Given that it is such a hard choice to make part of my tumour has been sent to the US for genomic testing. I'm waiting for the results and see the Oncologist next week.
Any advice would be welcome.

royal I can't believe how long you've been waiting, I'm surprised you're not climbing the walls. Very best of luck for Monday.

Yet more great news today, the results of my bone scan finally came through and I've got osteopenia thanks to the anastrazole, which is pre osteoporosis so they've prescribed horse tablets, calcium and vit D. When I went to the gp this afternoon to collect the prescription we had a chat about the hysterectomy decision. He thinks it's a bit dramatic and wouldn't really recommend it for a family member based on my history. Better to put up with a few bleeds. The breast nurse was of the same opinion when I spoke to her earlier. Now what?

I wish they could all agree, I'm no expert.

Hello to everyone else. I can't help re cold caps I'm afraid

Mrs RodG - I also have osteopenia and am now on the chewable horse tablets. Thing is, I think I would have had some bone thing anyway because my father apparently had bones like sponge but because he walked everywhere and had a good diet, it wasn't picked up until he was in his 70 s and he never suffered at all. Keep walking!

Iseali - the oncotype test will give you a score which will tell you if chemo is beneficial matched with side effects. Mine came back as not needing it. At least you will know when that comes back.