Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

Born I think they will now refer you to a geneticist who will do another test in the tumour and a follow up blood test to confirm diagnosis. It's a looooong wait (at least for me). Seen her in January and haven't had full confirmation of diagnosis yet.
If confirmed they might advise you to have a hysterectomy depending on your age, and your children will be tested at 18 to find out if they have the gene. It's all very scary and I don't have all the answers yet but happy to help if I can.

Hope you don't mind me de-lurking. I have sent you a pm Born as I had colon cancer and a right hemi-colectomy just over 2 years ago in April 2017. My tumour was tested and just before Christmas that year I was told it was very likely I had Lynch. I saw a geneticist around April 2018 (I think) and bloods were taken - got full confirmation of MSH6 Lynch in June 2018.
I had a preventative hysterectomy last December.
At the moment I'm just awaiting some more investigations as my last scan showed my thyroid had nodules and I also have a thickened ureter. Must admit feeling a bit worried at the thought it could all be starting over again.

Just been diagnosed with breast cancer :(

Has anyone managed to work through their chemotherapy? I'm so worried about money :(

@NotSuchASmugMarriedNow1 I'm sorry you find yourself here.

I'm off work through chemo at the moment. There's LOADS of advice about money around - MacMillan are great if you give them a call.

Dulce and name Thank you for replying.
My children are 29, 31 and 34. I’m 57 next week.
They do t know about this yet, should I wait until I have a firm diagnosis? I feel so bad that I may have passed it on to them.
My parents are both still alive and mid 80’s by the way. X

I would wait tbh as they may have nothing to worry about. As they are adults, they will be tested straight away if you're positive, and will have colonoscopies from 25 years old anyway even if you're negative (I think). The only problem is that in my experience it takes ages for a firm diagnosis so it just depends how close you are to them and how easy you find to keep it from them. My dd is only 5 so my worries are much different to yours!

Hi notsuchasmugmarriednow I don't often post as I'm two years past treatment now...but do delurk if i think i can help! Er hope the below IS helpful!
Anyway ..first of all here is a hand to hold.
Second... do you definitely need chemo. Often it is a lumpectomy and then radiotherapy.
I'm not hugely hardy... but I worked pretty much throughout. I had lumpectomy on the Thursday and was back at my desk on Tuesday. With radiotherapy I had to work from home rather than commute from about halfway through.
The thing is that everyone reacts differently to treatment.. be it ops/chemo/radiotherapy... some people are ok...some not so much.
What I did learn about cancer is not to make plans or set anything in stone. But that there is lots if help and advice out there and employment protection too. Macmillan is indeed brilliant for practical help.
I wish you all the best.
Waves to everyone else...
ivampire I hope you're still running
Thinking if you tq

Hi NotSuch, I understand the worries about treatment and working.
I've just had a chemoradiotherapy plan confirmed, and although I would like to carry on working to some extent I fear I will not be able to for long.
I'm trying to keep an open mind and not to plan as freddie suggests, but it's hard.
I feel like I have no control over anything right now.

Born you are the same age as me and my children range in age from 15 to 32 (5 children - well most are adults now).

It didn't really surprise me that I have a genetic mutation as unfortunately there have been a lot of incidences of cancer throughout my relatives. I always lived in hope that we had just been unlucky though.
My children were aware that I was having genetic testing right from the beginning - I really don't know if this was the right thing to do or not. Now I do have a positive result though, none of mine want to undergo genetic testing to find out if they have inherited the gene at the moment.
There is a facebook group - Lynch Syndrome Uk which is great for support too.

@walnutwhipster sad to hear about your mum, my mum also has ovarian cancer, stage 4. she is on a trial at the moment.

Not such - I worked throughout although when I was going through chemo I was able to work from home. I am currently on sick for 3 weeks as I'm recovering from surgery. Believe that Macmillian offer grants and help

Waves to freddie

Yes, still running! But it’s gib who already knows she has a London Marathon place. I’m in the public ballot, and am circling a charity.

I can’t remember if I mentioned it - my 3-monthly bloods were taken last week. I’m pretty sure nothing’s wrong on the standard tests (they’d have called me in by now if anything was badly out of range). So it’s just a case of waiting for outpatients for the results of the detailed test that will show whether I continue in functional remission.

Sorry to hear so many people are living with uncertainty at the moment, it feels like cancer takes all control from us so being left not knowing what is happening next is the worst. I am in Aus so different systems/expectations here.

NotSuch so sorry you find yourself here - newly diagnosed is such a punch to the guts. Do you have access to a breast care nurse? Mine gave me a lot of support and advice when I was wrapping my head around the whole thing. With regards working through Chemo, everyone is different but I have to be honest and say there is no way I could. I have Inflammatory Breast Cancer, a rare and aggressive bastard, which means aggressive treatment. So far I have had 7 rounds of fortnightly "dose dense" Chemo, last one is next week. Exhaustion and Chemo brain are just not compatible with my job, a gentler more spread out Chemo regime and a job that can make allowances might be more doable. Financial stress is the last thing you want going through this, come on here if you need a handhold.

@mrsed1987 it was too late to offer anything. They gave her three months in April. I hope your mum's trial is successful. Dm's oncology nurse described it as the silent killer. DM was too ill for chemo, which at most would only have given her 3 extra months. I may sound awful but I now hope she falls asleep and doesn't wake up. She has suffered enough. x

Not well. Blue light ed to hospital with pneumonia x

So sorry to hear that TQ. Thanks for updating us, but concentrate on looking after yourself

So sorry to hear that TQ. Hope you get the treatment you need, keep us posted xx

@Walnutwhipster im so sorry. Oncology nurse so right. I had no idea of symptoms ect and mum did either. Horrible disease.

TQ - sorry to hear about that.

TQ I’m really sorry to hear that. I hope you have your daughters, or some of them, with you.

Really sorry TQ, hope they get it under control and you start to feel a bit better very soon x.

Echoing the good wishes for TQ - just what you don’t need hey! It sounds dramatic so I hope they have got you comfortable and some good drugs are getting you back on top of it again . Take care.

TQ I hope you are feeling better really quickly. It never ends does it the rubbish this disease chucks at us.

Longer catch up now - there’s been a lot of action on here the last few days!

iVampire good luck for your blood results.

Bridget it must be disappointing to be advised to change your holiday plans, especially if they were going to be a chance to live it up a bit before treatment. Any idea how soon the chemo might start and what regime you’ll be on? How’s your DP doing and is he giving you good support?

Snows agreed, I find it really odd when I read people are pleased to be ‘allowed’ a double mx! So messed up, this disease.

Ben, how are you getting on? Are you still suffering the joy of EC side effects? I was never nauseous on it, but if you are and it’s aggravating your hernia do give the helpline a call if you haven’t already. They have a good selection of anti sickness drugs to roll out if the basic information ones don’t work for you.

Diary, sorry for slow response to your question to me! No, I’m not on any trial currently. My onc mentioned one once but fairly half heartedly so maybe my case isn’t very interesting (which is probably what we’d all like really!) How are you feeling now, comments above about sickness apply to you too. Hope you’re feeling better. I found that with 3-week gaps I had a good 10 days of feeling pretty normal before the next dose. Much less when it was fortnightly.

Poor you with the hair loss WTF. Has it continued? Was your treatment yesterday ok?

Great news on your colon investigations mrsed! When might you get your biopsy results?

redspook, the chasing and waiting and worrying sounds dreadful for you. It does sound as though it requires several teams to be involved in the planning so no doubt that’s what the hold up is while they get themselves aligned but nonetheless it would be good if they could give you a dedicated point person to coordinate and keep you informed. I hope it gets settled soon but I can only imagine how worried you feel .

Born and Notsuch, welcome to the thread. And welcome back namechange. I hope you all get some positive news soon.

Notsuch, I would personally echo what Snows says about working while on chemo, unfortunately. That was true for me on EC and bearing in mind my job, which involves commuting, advising and making decisions and generally being ‘switched on’. I have been far from capable!

Finally, so sorry to Walnut and mrsed, it must be so distressing to watch your mums suffer . I hope they are/can be kept comfortable.

For me, first dose of paclitaxel and carboplatin today. Felt soooo sleepy and exhausted while it was going in (effects of piriton antihistamine) and so will be taking it easy now. I’ve got my eyes on the horizon of next Monday when I have tickets for Wimbledon and am determined to be up to going!

Oh shit TQ I hope the drugs have kicked in and you are feeling a bit better (& that your daughters are visiting with plenty of cashew nuts!)

Lots of love & positive thoughts to you xxx