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

My favourite
“ That news spoilt my day “
And later that day , same person
“ I know it’s not your fault but I am so upset “

Ok. Rightie oh. !

I have posted my favourite before. 'Don't think you are special, two out of every four people get cancer and anyway I was first! I think it was meant to be funny but I read it as , 'don't make so much fuss'.

The other one is 'Surely you must have finished your treatment by now' Oh sorry am I taking too long!

My all time fav was have you tried qigong? It's a chinese practice that can cure diseases the west consider fatal like cancer. Meditation style exercises to quieten the mind and create harmonious balance. Meditate the cancer away. Now I know I'm a hippy but I'm not addled lol

I’m officially joining this thread. I was diagnosed yesterday. Breast cancer. Lobular in situ. 12mm. My first mammogram. I can’t face reading all the info they have given me at the moment. I’m 53. No cancer anywhere in my family. No symptoms. No lump. I was very confused at the appointment because the doctor was referring to precancer throughout, with a plan for surgery etc, but it was only when talking to the nurse that she made it clear it was cancer, that some doctors only call it cancer if it’s started to invade. I just couldn’t get my head round it and felt I’d been deceived.

daisypond Welcome but sorry to see you here. I wish that professionals would all use the same terminology in the same ways. That is probably unrealistic and unreasonable but there is enough to take in without them all have their own preferences about what to call things. I would also have thought that pre-cancer meant some stage before the cells had become cancerous.

Hi all,
Quick check in from me....still off herceptin and still on heart drugs and hoping i can restart herceptin at some point. I'd had 8 of 18 then they discovered that my previously healthy heart wasn't liking it much, dammit.

My story....I had a mastectomy with implant recon in 2013 on the left and then again in 2014 on the right, both for widespread dcis. No treatment apart from surgery.
Was just about at my 5 years all clear when I found a lump on the right, pretty much this time last year.Turned out to be a 2cm grade 3, her2+ cancer. I had wle surgery (implant not affected so that was good) and lymph node biopsy (all clear) followed by 7 cycles of FEC-T chemo, plus perjeta and herceptin, and 15 rounds of rads. Was continuing the herceptin into the middle of this year until heart issues were picked up so I'm off it for now and on ramipril to improve my heart function. Seems weird to be saying that as I've never had heart problems...just unlucky I guess. It's all supposed to resolve once I'm properly off the herceptin....fingers crossed.

I've started my gradual return to work now which is ok and trying to take up normal life again but have been thrown off my stride a bit by this latest curved ball.

I don't post a lot now, but chip in from time to time. I've always found this thread useful and especially back in 2013 when I was driving myself crazy with worry.
Hugs for all here and especially the newbies.
BitOfFun your story brought a tear to my eye. Wishing you all the best.

My DH was there and all optimistic and saying it’s like a benign mole before it’s run amok and the nurse was saying no, that wasn’t right. It’s not benign. He wasn’t taking it in at all.

Daisy i think they tend to call breast cancer 'pre cancer" when it is in situ ie it hasnt yet developed the ability to become invasive and spread to other parts of the breast or body. So for ductal carcinoma in situ, which I had, it hasn't developed the ability to spread out of the ducts. This is a good thing.

I don't know much about lobular cancer but I imagine that lobular cancer in situ means that it hasn't yet developed the ability to invade outside of the lobules, which I would imagine is also a good thing.

It's all very scary and confusing though. Do you feel up to going back to your breast care nurse to ask her to go over it again? I certainly found mine a brilliant source of info and support when I was where you are now. My dcis was discovered on routine mammo with no lump. It was such a shock but meant that I needed only surgery to sort it out and no chemo or rads, because it was in situ.

Well just received the call I didn't want. I'm her2 positive and will be needing chemo. I literally can't stop crying. I've always had long hair my entire life and now I'm going to lose it. It's not an issue I'll wear a wig and I'll rock that, but it's the sodden reality hitting me now. Sorry will reply to you all later when I've sorted my head out. Can anyone recommend somewhere I can donate my hair to if it's been dyed? It's perm colour and hair is down to my waist. I'd like some good to come from all this xx

Nonotmenori I am so sorry that you have just received this news. I remember how much a shock it was. Have they told you yet which chemo they will be giving you, Depending on which kind you may be able to use the cold cap which works for some chemo regimes but not all.

I had to have paclitaxel because I needed Herceptin. Paclitaxel does work with the cold cap and it worked well for me. It isn't pleasant and not everyone can take it. I lost a bit of hair but no one but me and my hairdresser would have known. Might be Worthing looking into before you give up on your hair?

@Nonotmenori I’m so sorry you have gotten that crappy news! You are right you will survive and rock a wig but it is still awful.

@daisypond sorry you are officially here rather than just stopping by. It must be quite confusing all doctors using lots of different terms. I know what you mean about not being able to read all the info I had to put mine to the side for a few days before I could read through it properly.

On the things not to say to people. An old boss said to me after asking which cancer (bowel) ‘oh you’ll have to start eating your vegetables now’. Yes me not liking a lot of vegetables when you knew me 8 years ago is why I have cancer dickhead. As you can tell not quite over that one

My mum has just left to go back home she has been amazing and been here just over a month. She will come back for operation time but until then have to survive just us.

Hello all
I don’t post much these days. Diagnosed with malignant melanoma on my vulva January 2019. Had half my vulva and part of my vagina removed and skin grafted. Then had 3 cycles of adjuvant immunotherapy but that was stopped because it gave me liver inflammation- was on steroids for about 8 months to sort out the liver. Finally came off them last month- not a fun experience, and now I’ve got a delayed skin auto-immune reaction to the immunotherapy (lovely).

I had an interesting discussion with my gynaecologist today about “pre cancer” / “non invasive” cancer. He was saying that for some cancers the route from pre-cancerous to cancerous is well known- eg cervical cancer in his specialism. It sounds like the same is true of breast cancer.

The same is not true, unfortunately, of melanoma. So we know I have some microscopic pre cancerous melanoma in my vagina, but there isn’t a way to remove it all and still leave me with what he describes as a “functional vagina”. So we “watch and wait” instead.

@Nonotmenori I'm so sorry about the chemo lovely, I would be really upset too and I hate to think of you crying. In a little while make yourself a cup of sweet tea and take a breath, then could you try and see the chemo as being an extra level of protection and added insurance? Because that is what it is you know.

I'm puzzled why you need chemo though because your nodes were all clear weren't they.

@peaceanddove yes they were clear. My her2 was inconclusive and I was in the grey area so it wasn't never off the table for me. I just hoped I wouldn't be anymore unlucky, but unfortunately that's not the case. I'm drinking vodka. My mum is telling my little one this evening as we've kept it from her because she will worry and get upset. Can't not tell her now. Everyone is going to know. I was hoping I could get away with it. I just need a little cry into a good vodka or ten and I'll sort my pathetic self out. Sorry if I'm upsetting anyone. I know a few of you have a lot worse to deal with. Love to you all xxx

I've been dipping in and out of this thread since Lesley was Ruby.

Five years ago I had a Borderline Ovarian Tumour, which is relevant to WTFF comment and Daisy's confusion. It's 'clinically benign', 'cured by surgery' and only a tiny %age recur. Only a tiny %age of them come back as cancer, so now even the big cancer websites, like Macmillan, make it clear that it is 'different from cancer'. But I still come across ObGyn consultants who trained 20 odd years ago who refer to it as cancer and ask why I didn't have chemo. Answer: because chemo kills more Borderline patients than it cures. There aren't any cancer cells for it to destroy, just healthy ones. But every cancer is different, so breast in situ isn't the same as pre-cancerous cervical and so on.

But I was given 5 years of monitoring for recurrence, and on the very last scan I was OK for gyne probs, but there was something wrong with my colon - which turned out to be Stage 2 colon cancer. No symptoms whatsoever, so I've been incredibly lucky.

Surgery in late October. Lost half my colon - tumour was in transverse section just under my midriff - and have just started chemo. Capecitabine, just tablets, unlikely to lose my hair, but goes on for 6 months, which is a bit daunting.

Peace My lymph nodes were clear and it was left up to me whether I decided to have chemo or not. It's another controversial area, apparently. Some docs say Yes, even for Stage 2; others disagree. It's a 'belt and braces' chemo, just in case there are any stray cells and I have the sort of tumour that is likely to benefit from chemo, so the senior oncologist seemed v keen that I should. But I can always give up if I think it's taking too much out of me and compromising my ability to lead an independent life. I'm 78 and live on my own. Don't want to be catapulted into a world of carers and zimmer frames.

Squiffy Where is your tumour? Before my op - and for 2 weeks after it - I was on a low-residue diet. No fruit or veg whatsoever. Even now I"m careful about stalks and skins. So your friend is not only dickhead but also a know-nothing idiot. So glad you have such a lovely Mum. Cancer is so different at your age with young ones to look after.

Best wishes to everyone else. This thread, started by the late MaryAnneSingleton, has done so much good over the years.

You absolutely deserve that vodka @Nonotmenori. I know what you mean about hoping to get away with it as in not having to tell people. I'm exactly the same. If I can get away with 'just' radiotherapy then I won't have to tell anyone, and if no one else knows then I will find it so much easier to pretend this never happened iyswim? But I had a vivid dream last night when my surgeon told me I would need chemo after all, so I'm convinced that's what is going to happen.

But we will be fine and get through it, and this time next year we will be done with it all x

Hi @WTF99 I have invasive lobular cancer. Trouble with this one is it doesn't show up on mammograms. I'm only 38 so I wouldn't have one anyway. It spreads like cobwebs rather than in clumps so it's difficult to locate. Only found it because I also have DCIS which has a 5cm lump. My double mastectomy is next week.

@Toofaroutallmylife watching and waiting sounds awful. The wait to diagnosis was hard enough. Glad your mum is so good. Mine seems to have adopted a death bed voice whenever she talks to me...very irritating. Other than that I've got super support systems in place.

@Nonotmenori take care of yourself and allow yourself whatever you need

@Thymeout the joys of low fibre diet! I miss vegetables, food with some flavour and that isn’t beige. How are you finding the tablets? I’m on them too and I don’t think I get many side effects I think most of mine come from the infusion.

@Nonotmenori there is no need to apologise this is exactly what we are all here for!

@Toofaroutallmylife watching and waiting sounds like a new form of hell im sorry that is your only option.

Thanks squiffy and hippie . I try to think of it as me being cancer free and just needing monitoring. So overall I’m very lucky. It just gets a bit stressy before scans.

I think it’s harder at the moment because although I had clear scans in November my gynaecologist picked up a skin change 2 weeks later, so I had another bit of my vagina removed in January. And what’s worse is that my next scans are the same day that DD starts her GCSEs. I just can’t have anything found on those scans.

(Hippie - I think you may be confusing my mum with someone else (Squiffy’s? ) - mine has dementia so isn’t much support. Although it was quite funny trying to explain I had cancer in my vulva: “That sounds like a car” “No mum, you’re thinking of a Volvo”)

Hugs to Nonotmenori and daisypond - tough couple of days for you x

@toofaroutallmylife I'm so sorry! I'm blinking useless, I was meant to write squiffy inbetweeners the 2 comments! Sorry again

Hippie no problem at all! It reminds me of the time the dear departed PurpleUnicorns said she hoped DM would be running round after me. I pointed out that as she was in hospital under a Court order that would be a bit of a disaster.

I am afraid I have a black sense of humour, which serves me well

I'm adding my story incase it is of use to someone. I don't post much anymore but occasionally can be found lurking around the bar of the Patience.

I'm in my forties with a dh and four children, who are teens upwards.
I was diagnosed with an unusual form of endometrial cancer and had a total hysterectomy plus oophrectomy. I had a post op intra abdominal haemorrhage and had a return to theatre and multiple transfusions.

The op brought on surgical menopause and I have been told no hrt due to the cancer being oestrogen driven. The joints in my hand are a bit achy post op. I've got used to the hot flushes and insomnia. luckily I haven't suffered any mood difficulties.

I'm currently awaiting genetic testing results, although there is a family history of cancer my gut feeling is nothing will show up.

In myself I feel very well. It has been a surreal experience and I share that unsettled feeling that others here have.

@BitOfFun, without wanting to be too sentimental I think you're bloody amazing . My dad was diagnosed with incurable cancer and I know he found it incredibly difficult not too feel angry and resentful of the hand he'd been dealt. He spent a lot of time unhappy and sadly it was only very late on that he started to 'live' and not be held to ransom by his cancer.

Good to hear you have sorted care for your youngest daughter. It must be such a relief to know you have chosen her home. Has she settled in well? I work with young people with additional needs and always have an eye on what they will need/be at age 20etc.

Love to all

@catnidge can I ask what your genetic testing involved? I have an appointment on Friday (if I don’t have to cancel). They sent me a form to fill out months ago for family history which I did and then got sent an appointment. No idea what it involves.

@Toofaroutallmylife yep my mum has been good. She is on her way back to Australia though now (I’ve lived over here nearly 9 years now). She has been amazing and we couldn’t have done these last few weeks and A&E and hospital trips without her here look after DS and just knowing she is there has been amazing. I am of course rubbish at telling her such things.

@squiffy01, the appointment was about 45 minutes long. The family tree had been put on a computer and they added the extra information I had. Based on the family tree, my cancer, age and lack of risk factors for the cancer I had, they decided there was enough evidence to test.

They talked through testing and the potential implications for myself and my family. The screening that would be carried out if the test is positive.

They also discussed things I hadn't really thought of, such as insurance and how if my children tested positive they would be entitled to ivf type treatment to select embryos free of the fault.

I found the appointment very informative. Hope your appointment goes well on Friday. Take all the info you have with you, as they may need to contact other staff involved in your treatment.

@squiffy01, just read back through and see you have bowel cancer. I'm guessing you'll be tested for lynch syndrome which is what I'm being tested for!