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Cancer support Q&A. Post your questions to panel of Mumsnetters, all of whom have experience of living with cancer - ANSWERS BACK

(31 Posts)
RachelMumsnet (MNHQ) Mon 11-Feb-13 14:54:37

Macmillan know that it can help those who have cancer (or who have a family member/friend who has cancer) to talk to others who have experience of cancer to share advice/tips and receive support. And we certainly know, from the many amazing cancer-support threads on Mumsnet, how valuable this kind of peer support can be.

With that in mind, Macmillian and Mumsnet are inviting you to send in your questions to the 'experts'; MNers who have experience of cancer. Send your questions to the panel before the end of Monday 18th February and we'll post up their answers w/c Monday 25th February. Here's some background info about the panel:

KurriKurri
"I was diagnosed with breast cancer in 2008, aged 48. I had a mastectomy, followed by a second op. for lymph node clearance as it has spread to nodes. I then had six months of chemo, followed by radiotherapy, a year of herceptin and now I am on tamoxifen for five years.
As well as my family who have all tremendously suportive, I have had support from two local cancer charities, from two different cancer sports groups I joined, from MacMillan, Breast Cancer Care, from the MN tamoxifen thread (brilliant women), and from friends who have also been through cancer."

SweetestThing
"I was diagnosed with a rare and aggressive form of cancer in my parotid (salivary) gland in April 2011. I had surgery to remove the parotid gland and the lymph nodes underneath, where the cancer had spread to, followed by 30 sessions of radiotherapy. During the surgery, my facial nerve was severed, so I have facial paralysis on one side of my face, which has meant further surgery, physio and ongoing Botox!
I've had fantastic support from the NHS all the way through and have found it to be very joined-up (not always the case, I know). A specialist Macmillan nurse was with me and my husband when we were given my diagnosis and I used their website and drop-in centre a lot, even now, almost two years after my diagnosis."


BlueyDragon
"I was diagnosed with bowel cancer in August 2012. Since then I've had surgery to remove the tumour; I am currently undergoing chemo to mop up any stray cells. The early days of diagnosis were a horrible shock to me and my family and friends, but between them and the medical professionals (including the Macmillan nurse at the hospital and the Macmillan helpline) we're getting through it. Now I have to deal with going back to work after prolonged absence and whilst still dealing with the chemo after-effects - my employer has been fantastic up until now so I'm hoping for a similarly supportive approach when I go back"


tacyn
"I was diagnosed in early 2012 just after the birth of my second child with a soft tissue sarcoma. I have had a lumpectomy to remove the original tumour (on my bum/hip) then further surgery following wound infection. I had 4 weeks radiotherapy on this site then 4 months of inpatient chemo (a doublet regime) to deal with the spread.
My condition is chronic (Incurable) so although I am currently not in treatment and cancer is in remission, I have to be scanned every 3 months to see if more treatment is needed. I have had support from Macmillan, my specialist nurse and the dr/nurses that treated me. I also see a dietician, psychotherapist and a physio to help with the effects of this plus massage and acupuncture. Most importantly my family and friends keep me going."

Pamela, a Macmillan Cancer Information Nurse Specialist will also be on hand to answer questions.

mornsw Tue 12-Feb-13 16:04:37

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

MmeLindor Tue 12-Feb-13 16:20:16

I have no questions, but just wanted to say that I think this is a great idea, and extend my best wishes to your fab panel for their continued recovery.

thanks

no questions either but wanted to say this is a great idea and thanks to those taking part and sharing their experience.

it also acts as yet another reminder to me that i should stop ignoring some retests i need to have. i have had treatment on my cervix for cell changes three times now as it always quickly returns. haven't been checked out for over 2 years now. i tell myself it's just that i keep 'forgetting' and/or that i may as well put it off for a bit as i know what the result will be and i will just need effected area removing again but i think i may also be scared now.

daft to ignore it i know and hearing real stories of people who have cancer or people who have lost people to it wakes me up.

i wish the panel all the best with their recovery journeys and again thank them for doing what they're doing to raise awareness.

gosh no one is posting.

ok i do have a question.

how easily did you get a diagnosis and what advice do you have about this stage?

i ask because i know a woman whose son has leukemia who was told for months and months that her son just had a virus etc even though she kept taking him to the doctors because she knew something wasn't right. it was only when he got extremely ill and she took him to an emergency clinic that he was immediately dx and started on blood therapy right there and then and then ambulanced to a specialist hospital for further treatment.

i also had an aunt who was unwell for ages and convinced of it and being told she was getting asthma and other weird explanations until it turned out she was full of tumours.

were your experiences better and do you have any advice for people worried about themselves or loved ones in terms of proper treatment by gps?

Yes, swallowed, I'd like to know that too. ExP was fobbed off for months and he had lumps on his head and neck that were getting bigger. Finally diagnosed with lung cancer and lymphoma (?) by which time it was too late. I'm also concerned about the pain and discomfort he went through, though to be fair, he wanted to stay alert for as long as possible.

bestbefore Thu 14-Feb-13 15:30:25

my question is what do you say when someone says their dh/ dp etc has cancer? i always feel so useless and offer to give practical support but just wonder what the best thing is to say to those affected by cancer indirectly.
thanks.

JediGirl21 Thu 14-Feb-13 19:49:13

Thanks to all of you who've offered to help out with this - think it is a brilliant idea.
We have a friend who has recently been diagnosed.
We have been a bit crap at keeping in touch since we all had DCs (life getting in the way) and now finding it hard to be supportive without being trite/disingenuous or worse e.g. Realised today I was moaning on FBook about my vague sniffle fgs

Advice on how to be helpful - what really helps? Especially when you can't actually go round and watch the kids/force a casserole upon someone as it's too far?

chimchar Thu 14-Feb-13 22:12:46

Hi all.

Thanks for doing this...I hope that you are all doing ok.

My question is....what sort of gifts did you, or would you like to have received when you were undergoing treatment?

A lovely lady I know is having a really shitty time at the mo, and has been told her survival is not likely to go beyond five years at the most.

I really want to give her a gift to say that we're thinking of her, but I don't want to seem insensitive or belittle what she is going through.

Is there a right or wrong thing to say?

You seem to be the ideal ladies to ask.

X

Hopeforever Thu 14-Feb-13 22:24:08

Having visited my GP this morning to talk about a lump in my breast, I'm waiting to be seen in the 2 week fast track breast clinic.

My question is, other than my husband and best friend, is it best to wait until I've had a diagnosis or will my close family be upset that I've kept this from them? I obviously am hoping its just a cyst, but with 2 family members who've had (and survived) breast cancer I'm keeping an open mind.

Who needs to know, who will be my best support?

Thank you

Quickchick1000 Fri 15-Feb-13 03:47:10

My sister-in-law was diagnosed with AML leukaemia the Friday after Christmas, she is now in hospital for her second round of chemotherapy. My brother has been keeping a blog about how they are all coping with everything www.theleukaemiaconclusion.co.uk an inspiring read for anyone unfortunate enough to be affected by cancer.

Doyouthinktheysaurus Fri 15-Feb-13 08:19:49

Firstly, best wishes to all of you, I hope your treatment and recovery continutesthanks

My question is about living with having had cancer iyswim. I had cervical cancer 7 and a bit years ago and have since had the all clear. I've never really got faith in my body back though. I had no symptoms, didn't know anything was wrong until those fateful words. So now I'm healthy, but there's still that nagging doubt that comes up every now and again.....how do I really know what's going on inside me!?!

I fear if its happened before, it could happen againconfused I know there is no basis for this and I do keep myself fit, running a lot and stuff but I don't think this fear will go. Does anyone else in recovery feel like this? or am I just weird

MTBMummy Fri 15-Feb-13 12:02:08

I think this is an amazing idea, and I had support from our Dustbin when my mum was diagnosed, and eventually passed away as a result of cancer.

No real questions, still dealing with our loss - but I think you're all amazing women

RachelMumsnet (MNHQ) Fri 15-Feb-13 13:29:53

Thanks to everyone for posting so far. As the Q&A was a little slow taking off, we've decided to extend it and we'll be taking questions until the end of Monday 18th Feb. Do keep them coming in.

camacha Fri 15-Feb-13 16:02:03

Is Lobular Neoplasia Cancer?

Wigeon Fri 15-Feb-13 17:16:45

Thank you for taking part in this, and hope you are doing ok at the moment.

A close friend of mine's husband has testicular cancer and has had his first round of chemo. I am really struggling to know how best to support her. I live about an hour away, and she works 4 days, so not very practical just to drop round periodically. I text her sometimes, especially if I know her DH has had a big hospital appointment or something, but she often doesn't reply, which is of course fine - I'm pretty sure she just feels overwhelmed by it. But I don't know how often to be in touch - what is enough so that she knows I'm there for her, but not so much that she feels hassled and annoyed! What sort of support did you and your DPs / DHs find useful when you were going through treatment? How much contact from friends was good? I'm also not sure how I can help, practically - is there anything which you found useful?

Floweryhat Fri 15-Feb-13 20:48:53

How can a friend best be supportive when the treatments are over and th remission starts? I guess there may be more feelings etc at this stage, but you don't want to remind your friend abut it unnecessarily, yet want to be an ongoing support. Practical help when needed was easy, but how to remain supportive during life after cancer with the ongoing checks etc?

WaterBiscuit Sat 16-Feb-13 00:32:58

My best friend will not be having any further treatmnt. How do I stop myself from calling her every day? Or should I do so? I live 100s of miles away in a different country. Should I go home? How do I be 'normal' with her when the situation is far from normal? How do I balance concern-from-a-distance against hovering-over-a-crisis? She has her husband. I don't want to impose. But I want to support. I miss her already. I don't know how to do what's best for her right now. It might be too late soon. She'd never ask for me to do anything; we talk almost every day but not really about "it".

WaterBiscuit Sat 16-Feb-13 00:36:57

I should clarify she is now in pall care.

invicta Sun 17-Feb-13 08:47:46

Great thread! ( and hello to Kurri who I have 'met' on the tamoxifen thread).

One question I have is regarding the ' blackheads' I have on my boob following radiotherapy last year. I assumed they would just go. Should I squeeze them, or am I stuck with them? Thanks.

I found telling me post diagnosis the best for my breast cancer. I didn't want to worry people until I knew.

LIZS Sun 17-Feb-13 11:23:33

Can I ask for tips for telling others, especially children , about another family member's illness even when we ourselves know relatively little and are not local. Also what support was most helpful to the patient at each stage of treatment - pre/post surgery, during chemo/radio and beyond.

TicTacSir Sun 17-Feb-13 19:41:26

My friend has a returning tumour for a third time. Early 30s. 3 young children. Don't know what to do or say to support her. First one (stage 4) in the mouth; second one and this latest one in lung. Also appeared in lymph nodes. Already had chemotherapy, radiotherapy... several ops. I so much want to help her but what is she fighting against here? She feels well. Thank you.

MikeATCISS Sun 17-Feb-13 21:00:56

Dear Mumsnetters, just a pat on the back for setting this Q&A up with Macmillan. As a Cancer survivor with 4 children and 2 grandchildren I am aware of the gamut of feelings that being diagnosed with cancer can confront you with, and the dangers of denial. As a trustee of a South Wales based cancer charity (Cancer Information and Support Services) I would like to publicise a recent Macmillan report that highlights research showing that as many of 1 in 4 people diagnosed with cancer do NOT follow through with treatment as they do not believe that their friends/family would be able to support them through it. I hope your forum will go a long way to show that cancer is very survivable - to those in despair please know that Macmillan, CISS and many other local charities are there for you and our services are free.

FairyJen Mon 18-Feb-13 17:54:36

What I the one thing/tip that you k ow now that you wished you knew before the diagnosis?

Incredible that you are doing this by the way x

Meganlillymai Mon 18-Feb-13 22:36:00

My mums had a recall. Se had a mammogram last week n has to go for another tomorrow? Anyone had this I'm worried sick!???

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