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Cancer support thread #73 - come in, we're here for you.

971 replies

Trumpton · 04/12/2019 16:54

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 is HERE

Current members, please do introduce yourselves smile

OP posts:
Thread gallery
8
TenaKween · 05/12/2019 16:07

Hi, I had vulva cancer scc1a last year, I had a WLE which removed the cancer but there's still pre-cancer VIN at the margins.
Currently waiting for ct results for an abdominal mass. Although secretary has said my report still isn't in but the scan is now marked as routine. That might be good I think?

Zorgothslugofdoom · 05/12/2019 18:19

Thanks for all of the support. I'm not going home today, but do feel a bit better - been on nebuliser, steroids, antibiotics and antiviral all day. My port site is really sore, so they're removing the needle and dressing it tonight, and will then have ultrasound tomorrow. The consultant said it's not sat correctly, and that part of it is hanging out 🤢 🤮. Hoping to get some sleep tonight.

Bloodybridget · 05/12/2019 18:36

TenaKween fingers crossed for your scan results.
Zorgoth hope they get the port sited more comfortably, and that you have a better night. Have you been dozing during the day?

SisyphusRocks · 05/12/2019 19:37

My 2 youngest daughters spend quite a bit of time together and they have good friends and partners Skap I think the problem is that my father died when he was a couple of years older than I am now, and my youngest sister was 19 at the time. The similarities are a bit jarring for her, the poor kid.

I hope so TenaKween I'll be keeping my fingers crossed for you.

Squiffy01 · 06/12/2019 08:20

Hi All,

Jumped on to the last thread late. I’m 32 and recently diagnosed with bowel cancer, stage 3.
I was reading the last thread in an attempt to get know everyone but I always struggle in mumsnet as I have the worst memory so never remember who has said what and names when it comes to replying. So please don’t think me rude if I don’t manage person messages I am reading and shall attempt to keep up.

Some of you asked a few questions to my first post (sorry see above can’t remeber who Blush )
I start chemo on the 11th one day infusion in the hospital then two weeks of tablets and a week off is one cycle. I am to have 4 before they rescan. After that if it has shrunk nicely they will operate and remove mass and part of bowel. The surgeon was worried about operating first as it’s quite bulky and he isn’t sure he would get it all.
As for support I have an amazing husband but other than that all family are in Australia. I have some very good friends over here but they all work so will be good emotional support I’m sure but not so much on a practical level.

At the moment I just feel like a bit of a fraud. I know I have it I’m not in denial about it but I’m not sick. The one and only symptom I had is now gone with the low fibre (and so bloody boring) diet I have been put on.

I was in bits before I got all test results back as I stupidly googled the person I had an appointment with and saw she was cancer specialist but since then the only time I cry is when people are crying at me.
Everyone keeps saying I’m so brave and I don’t need to be brave but I’m not I don’t feel anything because nothing is happening. That probably makes no sense.
I’m sure it will become more real on Wednesday when first chemo is done but even then I’m having one where they say hair will thin but not fall out so even that makes me feel a bit of a fraud. Which is ridiculous cause I wouldn’t feel that about anyone else!

SisyphusRocks · 06/12/2019 08:41

Hi Squiffy

I also look very healthy and don't feel sick at all, so know what you mean about feeling like a fraud. I'm still attending uni as am in my last year of a degree I waited for decades to do, and am bloody determined to finish it.

Someone commented the other day that if I really have cancer, surely I should be at home and how am I even walking around... Hmm

Most of my family live elsewhere too - not as far afield as Australia though. I do have some lovely friends, but live alone, which worries my daughters and mother.

meercat23 · 06/12/2019 08:57

Squiffy please don't worry about remembering names etc. Some of the people here are fantastic at doing that but by no means all of us!! Just wanted to say that you are not in any way a fraud. It is very common to go through stages when you just seem to float through it all. Whether this is numbness, a bit of a denial or just because it is a lot to take in, I don't know bit it really doesn't matter. Whatever anyone else says or believes all that matters is that you get through this in whatever way makes most sense for you.

Sisyphus the comment you were unfortunate enough to hear has just taken my breath away. Let's just hope that whatever ignorant person said that to you is never unfortunate enough to find out for themselves how best to cope with cancer. Meanwhile you are right to cope with it in the way that suits you and absolutely right not to give up on one second of the degree that you have waited so long to do.

My muscle and joint pain has subsided now and I am so grateful to be able to move without pain again. A quietish weekend planned putting up the tree and decorations. MY DC are grown up now and even my grandchildren are no longer little but they still expect the tree and the daft Christmas village that I put up each year and I guess this year is not the year not to do it. They will all be over next weekend for our traditional pre-Christmas lunch so I have a whole week to get it all done.

Next week I have another echocardiogram and consultation with the cardiologist so I guess I will know then whether they will let me carry on with the Herceptin. I know it is daft but I am feeling quite nervous about that.

meercat23 · 06/12/2019 09:09

Forgot to give my summary for the new thread! I am 72 and was diagnosed with Breast cancer last March. A 12 mm Stage 2 tumour. I had surgery on March 17 which showed clear boundaries and no spread to the lymph nodes. The tumour was ER+ and Her-2+. Following surgery I had 9 weekly rounds of chemo, Paclitaxel and have completed 10 of the 18 three weekly Herceptin treatments to suppress the Her-2 I also get Zolodronioc Acid every six mongths for 2 years and will be taking an Oestrogen reducing drug Anastrazole for at least five years.

After chemo I had 18 sessions of Radiotherapy including three specifically targeted at the surgery site. I was lucky in that only the last three targeted sessions caused any skin problems and they were very slight and healed quickly.

I have been extremely lucky both in terms of the success of treatment so far and the impact on me of the side effects. I used the cold cap and it worked for me so I didn't lose much my hair and it is all growing back strongly . The side effects I have had have generally been the milder ones and mostly passed quite quickly. Nevertheless this has been the hardest thing I have ever been through.

There are people here who I know have had a much tougher time and who yet find time to be here to help and support others. You all have my utmost respect and admiration and thanks.

SisyphusRocks · 06/12/2019 09:35

Hi meercat23 I'm still new here so am still getting to grips with much of the terminology, so excuse my ignorance, but what's ER+ and Her-2+?

I've not been told anything about which stage I'm at yet. Have got another MRI today so will hopefully find out then.

Minxmumma · 06/12/2019 10:15

Sorry for my absence, I hope everyone is doing ok today.

Finally feeling fairly normal after my mastectomy for 2nd round of Breast cancer this summer. Assumed my endless exhaustion was due to busy life, a toddler, stress from reoccurence and my dm being stg 4 and having ups and downs. However turns out I have megloblastic anaemia from folate deficiency - not diet based the oncologist thinks it maybe an absorption issue.
They have put me on supplements for 6 months to see if it will sort itself, there has been mention of a transfusion if not (oh the joys!)

Sort of glad there is a reason for how I feel but I am so fed up with being 'ill', I don't have the time for it right now and need to be able to support my dp.

Gentle hugs all round lovely people x

meercat23 · 06/12/2019 11:13

Sisyphus ER+ means that the tumour they removed was tested and proved to be responsive to/linked to oestrogen. Her-2+ means that is was also responsive to/linked to Her-2, ( I know that is also a hormone but no idea what it does.) Tumours can also be linked to Progesterone but mine wasn't. If you have a hormone linked tumour you will be given treatments such as Herceptin, Tamoxifen or Anastrazole to reduce production of those hormones and therefore reduce the chances of a recurrence.

The reason I had to have chemo despite the fact that my tumour had been removed with clear margins and hadn't spread is that Herceptin is only licensed to be given following chemo.

Toofaroutallmylife · 06/12/2019 11:57

Hello, please can I have a little whinge?

I saw my gynaecologist this morning. I was fairly relaxed about it as my scans were clear 2 weeks ago, but he thinks I have an area of melanoma in situ in my vagina.

Going back to see him next week so he can have a better look and maybe do a biopsy.

The good news is he doesn’t think it’s invasive, but if it is melanoma in situ it will need to be removed. It won’t be as big an op as last time but I’d rather not have more of my vagina removed!

I think DH has forgotten I was even going to see the gynaecologist today.

Ah well, time to put my metaphorical big girl pants on. I’d been planning to bin my actual big pants, but looks like I’ll need them for a while longer

TenaKween · 06/12/2019 13:00

toofar, sorry to hear that. I have the same fear every check up too. I presume treatment like aldara doesn't work for melanoma?
I never let go of my big pants btw 😁

Toofaroutallmylife · 06/12/2019 13:13

TenaKween He did mention cream as a possibility (I can’t remember the name), but said it would need applying 2-3 times a week for 4 months, and might cause skin irritation, so I’m not very keen.

Bloodybridget · 06/12/2019 14:06

Toofar oh that is shit news, I'm really sorry. Do hope it can be treated other than by surgery. Or, better still, that he was mistaken and it turns out you don't have melanoma!
Squiffy that numb, unreal feeling is really common, I think, I certainly had it. I didn't really believe properly that I even had cancer till I started chemo.And as meercat said, absolutely no need to worry about not keeping track of names, posts, diagnoses, or anything else! So it'll be at least 12 weeks before you have surgery?
meercat I'm glad to hear the joint and muscle pains have subsided. Enjoy doing tree and general Christmas stuff - I've done a bit already and the tree is going up next Friday, like you we have a family meal at the weekend. Crossing my fingers for you that the scans next week are OK.
Minxmumma I do hope the supplements work for you, no wonder you've been feeling shattered. Hugs back to you - you have a lot to cope with.
We're off to Scotland for a few days tomorrow, warm wishes to all in the meantime.

digerd · 06/12/2019 16:55

Toofar
I had a black melanoma on my arm and was caught just in time. It was in 1985 and graded stage 4 Insitu. 2 years before that I had cervical cancer then called carcinoma inSitu grade 4 which was also black and gynae said it was the same type of cancer. But never heard of a melanoma in the vagina, not that that helps/consoles you. But sorry that you have such a rare cancer.
I do know of a woman who had cancer in her womb that spread into the top of her vagina which was all taken out. She is fine today.

When a woman said to me " Oh, I have known many men who have had bladder cancer but you are the 1st woman I have met that has it," did nothing to make me feel better.

Also, I had 33 sessions of radiotherapy and in the hospital a woman said to me " Oh, I must tell you that you look so FIT" and kept repeating it. I replied that I had just been on the radiotherapy bed and must be glowing with radiation"!Grin. Not that I was laughing.
They mean well though. Good luck with your scan results.

MiniCooperLover · 06/12/2019 17:29

Hello, so today I went to the GP for an apt to talk about a breast lump. I only really felt it y'day putting on body cream, something I do twice a day but y'day for some reason I used the palm of my hand and pressed down and felt it. Thinking back my boob would get itchy every now and then but not enough to stick in my mind. So she felt, quickly said hi yes that's about 5cm' and told me straight away she was referring me and especially because of my age (46). So now I wait. Is it in 2 weeks I get ah apt for whenever or is it likely my apt is in the next two weeks? How does it work? She also suggested I take someone to my apt with me 😳

Skap · 06/12/2019 18:12

@MiniCooperLover Hello and welcome to the thread, hopefully you won't need to be on here for long. Lots of us on here with breast cancer and have been exactly where you are now. The 2 weeks is an NHS target, you should be seen within two weeks at the breast clinic. I would suggest you wait until the middle of next week and if you haven't heard anything then ring the breast clinic if you know which one it is.
No GP will ever make a diagnosis on a breast lump. Whatever your age or however the lump feels they always refer to the breast clinic.The chances are that it's not cancer and you will get reassurance on the day. If they think it is they will warn you but it won't be confirmed on the day. Do take someone, I didn't and it was hard.

What happens at the breast clinic. It's a long appointment, maybe 3 hours, because they do lots of tests on the day and for some you get instant results.
Mine started with a mammogram.Then I saw the consultant who had the results in front of her. She examined me and drew marks on my breast. Then back to the waiting room. Then I had an ultrasound and a biopsy. Then back to the waiting room. Then I saw the consultant again who said that the results of the biopsy would be back in ten days but that it was highly suspicious of breast cancer.

catnidge · 06/12/2019 19:22

@Trumpton, thanks for staring the new thread

@Bloodybridget, good news regarding your results. Hope you and your dp enjoy visiting the grandchildren and get to celebrate together.
My follow ups will be vault smears and internals. Apparently things can be felt before they'd see them on a scan!

@Toofaroutallmylife, gosh, hope you don't need those real and metaphorical too much longer.
Whilst it's good it's been spotted quickly, I can totally understand your wish to hang on to the rest of your vagina.
Have you spoken to your DH no

@ivampire, a change of meds must be hard to deal with, especially when you don't have a good feeling about it all. As @Bloodybridget says keep in touch.

@Zorgothslugofdoom, you've had an awful few days. I'm hoping you are home now and able to give your little one a hug.

@SisyphusRocks, that was a very silly comment from that person. People make lots of assumptions about cancer. I think there was a thread on MN awhile ago where someone claimed a friend of a friend couldn't have had cancer because they still had their hair and were doing the school runHmm

Hello to everyone new here. Pull up a chair in the Patience Inn. It's Friday eve so the 2 for 1 on cocktails is on! Grin

catnidge · 06/12/2019 19:32

I also forgot to introduce myself.Blush

I'm catnidge. I'm in my forties, live with DH and have four chiIdren. I was diagnosed with stage 1 endometrial cancer. I had a hysterectomy plus ovaries out in October. Unfortunately I had severe (and rare) complications resulting in a return to surgery.

Regarding the cancer all is good as it was removed by surgery alone.
I had a vault smear a few weeks ago and has just had the all clear on that.
I'm still a bit wobbly as recovery has taken longer than exoected due to the complications.
I've also had a surgical menopause, can't take hrt as cancer is oestrogen dependent so am feeling the impacts of insomnia and night sweats.

I'm waiting to see if testing for lynch syndrome will be carried out.

I'm back at work next week Grin

Toofaroutallmylife · 06/12/2019 19:40

Thanks all for the good wishes. Yes catnidge - he thought the appointment was on Monday so was doubly shocked!

Zorgothslugofdoom · 06/12/2019 21:26

Hi everyone, I'll catch up with the thread and do my history tomorrow - for now, I am home! Have to do blood thinner injections at home this weekend, and have loads of tablets, but said I could go home for the weekend and come back on monday for a scan. They think I might have a blood clot on the port, which has meant it is not sitting as snug to the collar bone as it should, so I have been given strict instructions to call them if I get any of an alarming list of symptoms, but it's great to come home! My chest infection has also improved and I can now walk slowly without hacking a lung up.

I did learn the following from this (1) if you have a port, wear a button up nightshirt/pyjama top, otherwise it's very uncomfortable, (2) pack an overnight bag before you need it (panic does not make for efficient packing), (3) take an extension cable for chargers, (4) babywipes are your friend, and (5) if in doubt, phone the helpline!

Christie's have been absolutely amazing - the staff are absolutely fantastic and so caring and nice. I don't know how they do what they do and stay so smiling and caring. If ever I needed an example of the NHS at its finest, the Christie ward I was one is a shining example.

Have a good weekend everyone, I'll do my history tomorrow.

Brassica · 06/12/2019 23:23

This thread is flying along already! Thanks Trumpton for starting it.

I’ve been quiet for a couple of weeks but all is well. My story: I was diagnosed with triple negative breast cancer in April following my finding a lump several months earlier that I wrongly assumed was the same lump as I’d already been told was normal tissue 😳. I started chemo very swiftly and had 16 rounds that ended in late September. Since then, I’ve had a lumpectomy and sentinel node biopsy that happily found zero dodgy material was left and I had therefore had a complete pathological response to chemo. My chances of recurrence are excellently low, and I’m in absolutely no doubt that I have been extremely fortunate in all that. I start 23 sessions of radio on Monday and then I will be done with treatment. I haven’t worked since chemo started, and live in south London with my husband and two young children. I’m 47. I lost every hair on my body during chemo but it’s all growing back now, also have embarked on the menopause thanks to chemo and am currently enjoying numerous hot flushes every day.

Welcome and commiserations to our newbies on here. There seems to be a wide range of different types of cancer on here now, which if nothing else makes for an education about this whole malarkey. We get to know our own types very well but it is sobering to hear about the others out there and what is involved in treating them and living with them. I wish you all good responses and clear scans as you go through, and lots of helpful support from your nearest and dearest which makes all the difference in my experience.

iVampire I’m sorry to hear about your recent uncertainty and I hope your options for second line drugs are good.

Bridget I’m so pleased to read that your scan results were so good! Congratulations. Did you get your sore mouth looked at too? Have a lovely trip to Scotland and enjoy the catch up.

Very glad to see that you are back home again Zorgoth, it must be a relief for you to get out of there and back to a comfy bed as well as your little boy. Let’s hope the infection is on its way out.

Sisyphus the others have said it very well already, but the numbness and lack of emotional reaction is very very normal. Some people weep and some don’t. You do not have to follow a script that other people expect for cancer, it’s you going through it. I still have barely cried about mine in 8 months and at times it does feel as if it happened to someone else.

And Squiffy a similar comment to you. I’m another one who looked and felt very well at the point of diagnosis. I’ve had many many comments even during/after chemo about how well I’ve seemed. It is possible to go through it and not look too cancer-y (of course, these people have not seen me without a wig or make up on, which help massively, and did not see me on the days when I had to stay in bed). It’s not fraudulent if you look ok or keep your hair or remain cheerful, just as it’s not weak if you find it frightening or exhausting. It just ‘is what it is’ for each of us and I guarantee you will get nods of recognition on here if you share what you’re feeling, even if those around you find it harder to get what you mean.

Good luck for your scan results ellen. You have had a horrible time with your wound and skin reaction. Due some good fortune I think!

Good luck also to you meercat for your appointment next week. Glad to hear your joints are less painful.

Sorry to hear of the new worry, toofar. It must feel demoralising to be told that there’s possibly more invasive surgery to come. I hope it turns out to be less of an issue than the gynae suspects.

Have a nice weekend everyone and best wishes to all waiting for treatment, scans, results etc.

Trumpton · 07/12/2019 00:39

Had my first Herceptin injection today in my fat thigh . It honestly did not hurt .
Discussion about cold-capping but advice was certainly to discontinue as last week tipped me into hypothermia. All to do with an over efficient ( preen) hypothalamus at the rear of the brain .
Had a mild wobble when the nurse went off to get me a wig voucher but even if I don’t wear it much it’s a good thing to have .
Went to bed at 9pm with a cracking headache and now on second wake up of night . Headache gone but it’s going to be a long night .

Food delivery arrived and they sent 3 large trays of diced chicken breast that I hadn’t ordered or paid for . I did not notice as had asked a friend to cover the delivery time until we got back from hospital . Rang straight away and driver was already on his way back to depot and so should keep them .
Must make curries and casseroles with them tomorrow/ today.
DH is singing carols at retail village tomorrow so hope to tag along and drink hot chocolate .
Sleep well everyone .

OP posts:
Skap · 07/12/2019 10:16

Brassica Lovely to hear you sound so positive. Do you have far to go for the radiotherapy. 23 is an odd number, I wonder why?

Catnidge and Brassica Shame about the menopause and of course no hope of HRT. I had shocking hot flushes through my menopause and avoided HRT because of risks didn't do me much good. Fans are your friend. Little rechargeable ones from Amazon are useful by the bedside when it's too cold to have a fan on all night. Plus layers at night, a thin nightie which can be whipped off and replaced saves soaking sheets.There is a Menopause topic on MN which might be of interest although I found it a bit mixed. One poster very evangelical about HRT and lots of snake oil promoters.

Toofaroutallmylife sorry to hear about the new suspicion. Is someone going with you next week?

@NaomiFromMilkShake how's it going after this week's round?

@Zorgothslugofdoom I'm glad you are home and have been so well looked after in hospital.

Minxmumma sorry about your anaemia and your DM. Actually I do know someone who used to need regular transfusions for it and they worked like magic to restore her so perhaps something to take if offered?

@Trumpton glad the Herceptin didn't have any side effects. I had my third one this week and was fine the next day but very dizzy the second day. Just when you think there is a pattern.

I'm having skin reactions to the chemo at the moment. After two days my hands are bright red and hot and my face around my eyes is red and hot as though I have goggles on. It's worse today than yesterday and I hope it starts to fade soon.

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