Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Evening lacies. I'm with @Pandoraslastchance as I'm also a one titted wonder!
Diagnosed July 18 with breast cancer from what I can remember it's oestrogen positive and just bad luck rather than anything genetic.
I had 6 rounds of chemo, fasted around them and also had acupuncture. Mastectomy on the 23rd of Jan. I don't want reconstruction at the moment.
I'm very lucky as I feel ok the tamoxifen has brought on night sweats and hot flushes but they are alright.
Oh I also had a DH who tried very hard, and 2 DCs 5 and 8. I've just turned 43.
And to add to the non stress I put our house on the market the day before surgery!

Fedup hope you will get some clarity from the next scan and will then know what it is rather than worrying about what it might be.

Thanks for the new thread. I haven’t posted much on the others but read the updates every day.

I am 47, married with a DSS. I was diagnosed with grade 3 stage 4 Inflammatory Breast Cancer in Nov 2018. The mass in my left breast was 10cm x 12cm. Mets in liver, lymph nodes and ribs. Also turns out it had metastasised to T11 in my spine. I had 4 rounds of chemo in January and February (EC) which reduced the breast mass by about 50% and appears to have zapped the mets in my liver, lymph nodes, ribs and spine. The oncology team were quite surprised by my response to the chemo.

After much discussion they have stopped chemo for now which freaked me right out! It was working!!!

But they want to hold it in reserve for the future, apparently. I didn’t realise that you can only have so much of each chemo drug before it stops working. They were going to move me on to docetaxel after the EC but instead they want me to do 15 rounds of rads and then endocrine therapy. I am having Zometa injections still and have had one zoladex depot injection. I started letrozole last week. I will then also have ribociclib after rads have finished. I am not a candidate for surgery so all the treatment is simply palliative.

Sorry that was long! I am still mentally catching up with the whirlwind of treatments/ life changes.

I had a lovely weekend. Celebrated a friend’s 40th and the fact that despite being diagnosed with stage 4 cancer (aggressive melanoma) 7 years ago, my friend currently has absolutely no evidence of active disease. It’s amazing. Thank you, immunotherapy.

We didn’t think we would be able to celebrate my friend’s 40th so it has been massively affirming and happy. And far too boozy.

Thank you peapod.

Rosies how frustrating! The waiting is bad enough without someone messing it up! Hope you get an appointment soon x

Hello Simmi here, I am 43 and was diagnosed last September with stage 3 HER2 positive, hormone negative breast cancer. I’ve just completed 6 months of chemo and will start radiation next week for 15 sessions followed by a mastectomy with immediate DIEP flap reconstruction. I live in Australia with my husband and two DDs (age 5 and 3).

Hi there,

Diagnosed with BC in Dec. 2016 when I was 44. ER+/HER-. Originally scheduled to have lumpectomy followed by radiotherapy. Did the genetic testing due to family history and found out I was BRCA2 + 24 hours before the lumpectomy was due to take place. Still had the lumpectomy in Feb. 2017, was put on Tamoxifen, followed by preventative double mastectomy with DIEP reconstruction in Sept. 2017. Then preventative oophorectomy in March 2018 (on Letrozole ever since). With nipple reconstruction & tattooing thrown in as well.

Have DC who will be 7 next month.

Currently in the lovely throes of menopause. Had the bone scan recently where they found osteopoenia.

Will have to be on Letrozole for longer than usual due to BRCA2. Every single menopausal twinge sends me into blind panic.

Forgot to say: diagnosed with stage 1, grade 2.

Hi everyone old and new, I''m 46 and it's 3 years since I had a lumpectomy and full lymph node clearance.

Just wondered if anyone else out there is struggling with Lymphedma? Mine appears to be gradually getting worse- I've managed so far without wearing my compression sleeve very often and just massaging and elevating occasionally. However, recently there seems to be more swelling to the underside of my wrist and forearm and it is showing pitting and if I don't wear my sleeve it is worse by the end of the day. With summer coming and shortsleeves and pretty tops in the wardrobe I'm feeling self-conscious as the sleeve looks so ugly . Anyone got any tips or can just sympathise ?

Hi tahiti - are you in, out (or shaking it about) at the moment?

It must be the weeks for list appointments. Not that I’m keen on the event, but I thought I’d better check I hadn’t missed anything as I’d heard nowt about date with a colonoscope. Yup, referral lost. But very helpful admin bod found me, at promised to ring back in about an hour to offer a slot. That was about 12 hours ago....

I’ll try again in the morning.

My Roasting Tin books (original and green) should be arriving tomorrow

Hello fresta Sorry to hear about the lymphodema, mine isn't sleeve worthy but a good friend has to wear hers everyday. I think she's had some kind of massage treatment which they taught her, and seems to help? She also says the sleeve keeps it mostly under control. Sorry not be more help. I can't wear anything tight on my arm and no rings or bracelets so I am lopsided jewellery wise but that's the only thing that makes my arm swell slightly.
Intro wise, stage 2 invasive lobular breast cancer in Feb 16, lumpectomy, chemo, rads, counselling and then tamoxifen, moved onto letrozole after 6 months as its slightly better for lobular cancer. Oophorectomy last year after a surprise period and it turned out I was allergic to zoladex,. 3 kids and a DH

Hope you lacies don't mind me hovering here ? I don't have cancer but my 33 year old daughter does. She was diagnosed 4 years ago with TNBC,underwent chemo,surgery and radiotherapy followed by DIEP reconstruction nearly 2 years ago.Tested negative for BRCA gene.Was doing well until cough led to chest X-ray showing mets in lungs. Further scans in January this year showed mets in liver and brain.
She is understandably really struggling but her Dad and I are doing our best to support her.It's every parent's worst nightmare and we are finding her mental state harder to deal with than the physical,if that makes sense?
She won't get out of bed or interact with friends.Has cut herself off from her work colleagues and seems to have totally given up.
I'm having difficulty finding Mums in a similar situation so I'm taking comfort from reading your stories.
If anyone has any advice that would help her I would be really grateful.

Signing in. I'm 45 years old and was diagnosed in September 2018 with Grade 2 Stage 4 Breast Cancer. It's hormone positive, so I was started on Tamoxifen initially, and switched to Letrozole then Anastrozole once I'd been put into a medically-induced menopause. I'm taking the oral chemotherapy Palbociclib, and have monthly injections of Goserilin and Doxcelatl (I think!), plus various bone strengtheners. I also had a few sessions of radiotherapy on my spine, as that's the main area of metastases, although I also have lung nodules and a tumour in one of my adrenal glands. I can be treated, but not cured.

I feel reasonably well really, if tired and achy from the medication side-effects, but googling the exact combination of letters and numbers in my diagnosis letter says I've got about 18-24 months. At the same time, my medical team tell me that some women with Stage 4 Breast Cancer can live for many years, so I don't really know what to think, tbh.

This thread has been a tremendous support to me, even though I don't post as much as I read.

Oh Dollykitten, I'm sorry that I posted before reading your post- I wish I could help. Is it possible to talk with your daughter's Macmillan nurse?

I was just re-reading the screenshots I took of my diagnostic letter to be accurate in my introduction, and noticed for the first time that it says I have inflammatory breast cancer. I'm kicking myself for googling now: the median survival rate at Stage 4 is 21 months. Still, I guess that means that half of people live longer.

This stuff is so frightening; I can't really absorb it.

@bitoffun. My mum is stage 4 ovarian cancer. Even the 1 year survival is low, she is just on 3rd line treatment, feeling well 2 and a half years later. Try not to focus on stats.

@BitOfFun I agree with @mrsed1987 that it’s best to stay away from stats. It sounds like you and I are in a similar position with our diagnoses although slightly different treatment. IBC is quite rare and the existing stats are based on a 5 year old study. It is an aggressive form of BC it has to be said, but the outlook doesn’t have to be as bleak as the stats would have you believe.

There is a Facebook group for women with Inflammatory BC. I have found it tremendously helpful and a really great source of information. If you are interested in joining send me a PM and I can send you the details. Some members of the group were diagnosed at stage 4 like us and are still going strong 7 years or more later.

UnMumsnetty hugs to you xx

dollykitten
Just wanted to reiterate what a pp said about encouraging your daughter to talk to someone.
Perhaps her gp or a nurse there who has known her for a while? Someone who knows her rather than her cancer? Does that make sense?
Big hugs to you all.

fresta
Hi, I don't have lymphodema but I've just done a quick google search and found these.
They are pricey but could you apply for a Macmillan grant perhaps?

DollyKitten I’m sorry, but most of us can’t help. What we have in common here is having it being tested for cancer ourselves, and may well not know what it’s like to be caring for someone else.

There used to be s thread got those supporting loved ones with cancer - if it’s still going there might be more shared experience there. I’ll see if I can find it for you (or you could start a new one£

Otherwise, all I can do is second the suggestion of seeking RL support via Macmillan or a cancer support centre

www.mumsnet.com/Talk/life_limiting_illness/2424732-A-thread-for-those-supporting-relatives-with-life-limiting-diseases

fresta

Running and other sports shops sell compression sleeves and compression tops. I don’t know if they’re firm enough for use with lymphodema but it might be worth having a look if you’re passing a sports shop

Dolly i second what iv sais. As much as we would like to help, we are all going through it ourselves so our outlook is very different to yours. I have cared for people with cancer in the past but since my diagnosis I seem to have forgotten what it was like.
Maybe start your own thread with the issues you're having and you might get more help? Good luck and all the best for your dd.

Re stats I find them way too scary so I don't read them. A friend of mine had bc 11 years ago and then it spread 10 years ago and she was told she had a 2% chance to live over 5 years. She's still here. She always says the only thing that matters with statistics is if you are on the good side of it. So you could have a 1% survival rate and if you're that one person that's all that counts. After she told me that I decided not to find out survival rates anymore. It's tough though and you can't help but wonder. Xx

Doh!! Of course I meant said!

Dollykitten I am not in your position yet but do have a daughter a similar age to yours who was diagnosed with TNBC last year. She has completed treatment similar to your daughters and we are aware we may find ourselves in your position. I am not sure if she is aware of a closed group on Facebook for young people with TNBC. My daughter has found it very helpful and has told me of people on it in the same position as your daughter so she may find it helpful. A book has been recommended on here previously by Dr Kathryn Mannix ‘ With the end in mind’ which I haven’t read but have taken note of and which you and your daughter may want to look at. As others have said there is also a thread to support people in your daughters place. I wish you strength as you support your daughter through this