CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

ggirl towels have always been provided when I've been in. Good luck tomorrow. How are you feeling?

So - here I am. Went for my routine mammogram this morning, and have ended the day with a sonogram and core biopsy. I will have official results in two days, but all the doctors who have seen my tests are virtually certain I have breast cancer. Where do I go from here? Any and all suggestions much, much appreciated. I am particularly interested in knowing about the best specialists in London. I am probably going to have some decisions to make re lumpectomy v mastectomy, etc. Also, what are other good online resources for advice and support? Thank you.

Welcome puttingthegenieback, but sorry you've had to join us. Probably not how you imagined your day going! to be honest my advice right now would be just to take a breath. There will be questions and decisions and all sorts of results and whatnot. But you can't do much until you have a definite diagnosis. Try to take it a step at a time.

For online resources, stick to legitimate organisations like the NHS and the charities.

Breast Cancer Care is the big one. They have lots of information and also a phone line.

I hope you get the best possible results

thanks Leslie , I'm feeling fine albeit a bit nervous. The admission suite just called to say I can delay coming in until 10am ..phew..thought they were going to cancel.
I'll be glad to get it out and then I'll,be glad to get the results.

puttingthegenieback sorry to hear about your day , hope you're not on your own and have some support with you. Loads of knowledgable people on this thread to support you as well.

Thanks so much, Leslie. To be honest, I'm in action mode now, as that's my way of dealing with bad news or a crisis. But you are right that I don't really know what I am dealing with yet! I am just trying to keep my head down and my mind off things and marshall myself to move forward as soon as possible following my appointment Wednesday. In the meantime, every time I google, what I find seems more scary than helpful. I really appreciate your advice about sticking to legitimate sources of information.
Should I stop googling altogether for now? ...
Thank you Leslie, I do have great real life support - family and amazing friends - although I don't feel much like talking to anyone about it IRL right now.

Sorry: I meant thank you ggirl! I need to read everyone's stories on this thread now.

Congratulations on your walk Leslie - it's a great achievement and I'm delighted you had a good weekend. I had a nice weekend celebrating my twins' becoming teenagers. It was a goal of mine to make this milestone, so we need to set a new one! So sorry to hear your news mysillydog - we are a lovely bunch in the club, but getting membership is a bitch. I hope you get a good plan from your doctors and that your kids are ok. Good luck with your op ggirl - fingers crossed for you. Sorry to hear you might have BC puttingthegenieback - it's tempting but it's terrifying to Google and I completely agree with Leslie that it's better to look at official websites when you are sure what you are looking for. There's so much variability in everyone's situations, diagnoses and treatments that you might not get what you need. Good luck with the next few days - waiting is tough x

If you can puttingthegenieback then definitely resist Google. As nicky says, every diagnosis is different. I felt that same urge to do something and it's frustrating waiting for answers. Can you channel your energies into something distracting? I'm sure someone a while back reorganised their wardrobe while waiting for a diagnosis! There's all sorts of nonsense about cancer out there, and even the reliable information is always slightly out of date. Try not to panic. There's some reassuring information about breast cancer in one of the first posts on the thread, which might counteract some of the scariness.

nicky I hope you all enjoyed the birthday celebrations that's an excellent milestone to reach.

ggirl phew that they didn't cancel, and for a slightly later start. Hopefully that'll you don't have too long to wait beforehand. Fingers firmly crossed for your results

Yes puttingthegenieback, as Leslie said this is the time to sort wardrobes/cupboards out and anything else you can do to keep yourself busy. You've done as much as you can do for now with going to the doctors. The waiting really is the worst, once your treatment plan is in place you'll feel much more in control. Fingers crossed for your results

ggirl - sending you warm wishes for your op tomorrow.
genie Sorry you find yourself here and fingers crossed

Hi to all the lacies...
Putting...i am a London girl who was diagnosed nearly a year ago. It is terrifying but the reality can be fine...i had a lumpectomy, no need for chemo and then did have radiotherapy.. .physically it was fine.
Like you they pretty much indicated I wouldn't be getting good news when I had the biopsy...not a fun week. My diagnosis was at Charing cross hospital.. .but after my terrible consultant there told me it was in my lymphnodes too (they hadn't tested them and later onbthey cane back clear), that I had two lumps (I did but one was a fibroadenoma) and wanted to guess the size of my breasts...(yes really...after I'd just been given a cancer diagnosis!!) I swapped to the Marsden...i can't sing their praises highly enough. They were reassuring, completely capable and you can barely see my scar (my surgeon was Nicky Roche and just amazinh). I went to see her privately and she put me straight on to nhs ...when she realised we were self funding.
So if you live anywhere near Fulham go there...i live about 30 mins on tube and that was fine even for daily radiotherapy appointments....
The very best of luck....
Oh and here's some reassurance.. I went to my GP and said I sort of felt incredibly lucky and he told me my experience was actually the norm....
I'm not negating that it's a bloody nightmare and I struggle mentally with thoughts that it will come back etc.. sometimes...but largely my life has so far gone back to normal..
Thinking of everyone else so much....hugs...

Just popping by briefly to say hello. First chemo cycle has knocked me badly it seems. 5 days of tablets then day 6 in a&e with a temp. Luckily all ok but all I've wanted to do since then is sleep, hence not popping by recently.
I'm due back at work in 2 weeks - not looking forward to that when I need 12+ hours sleep every day!

Thinking of you all, lovely lacies

Thank you so much, freddiemercury (I love your user name!). I will pm you if that's ok.
ggirl wishing you the very, very best of luck today.

Nicky congratulations on reaching your milestone! That's definitely a reason for celebration.

Greycat sorry you're not feeling so good. I found the first chemo was by far the worst - subsequent ones have not been so bad.

ggirl thinking of you today.

Genie sorry you are here. There's a lot to come to terms with in the first few weeks, take it easy.

ggirl I hope you are out the other side now and enjoying some excellent painkillers and a post-GA snooze

LittleGreyCat sorry to hear about the chemo. Make sure you mention all the side effects to your team as they might want to adjust the dose a bit to make it easier for you (nothing to worry about - it's very common). Sleep as much as you can, especially with your upcoming return to work will you be going back part time?

Waving to everyone else

Hi everyone - looking for a bit of advice. Should I take my DH along to the appointment where I will receive my diagnosis? I think I will be more emotionally vulnerable if he is with me, and I want to feel as strong as possible for this appointment. On the other hand, most people seem to think it is a good idea to have someone else along to listen and ask questions. DH wants to go but of course he says it is my decision.
ggirl I hope everything went well for you today.

Genie entirely up to you. Both me and and my friend have gone on our own to our . She has a husband, I don't. I could take friends / family but personally I feel I can concentrate and focus better on my own. You can be emotionally vulnerable later, with your DH in the comfort of your own home if you would feel better that way.

I also didn't want anyone asking questions on my behalf. But I'm used to being on my own. There's no right or wrong.

whoops! missed a bit there... I meant to say we've gone on our own to our separate consultant appointments. And I was diagnosed in hospital any way.

Thanks so much TwitterQueen.

Another question - thanks in advance for any advice, and my apologies for the frequent posts! I have just received a letter from our private insurance company that includes the following:

If you wish to participate you will be assigned a Doctor Case Manager who will guide you through the process from start to finish.
The Doctor Case Manager will work with you and gather your medical information from your current healthcare providers. Medical experts will review your information, and provide written recommendations and information about any alternative treatments and they will answer your specific questions. You will also receive a written report when the review is complete.
You have the opportunity to access these experts free of charge. Using this service does not mean that you are not happy with the medical services that you are currently receiving. It simply provides you with an additional medical expert who looks at your case and offers any additional medical treatment opinions.
If you agree to participate, it is important that you send me an email confirming your agreement along with the information below.
-
My biopsy on Monday must have triggered this. I am inclined to be deeply suspicious, as it seems to me that any suggestions an insurer might make must be based on cost management. I also don't know if I want any outside advice from someone not familiar with me personally and my situation. I'd appreciate advice from anyone who has been approached in this way.

I don’t know what to make of that insurance verbiage - to me it sounds like their way of offering a second opinion, but I don’t have medical insurance so could be completely wrong.

I’ve done all my appointments alone. First ones were a total whirl anyhow, and later ones I just haven’t felt the need. But most people seem to have someone with them - either for personal or practical support (eg transport after a treatment)

Tricky one. I had to go private for my hysterectomy because the hospital where I had the op - which is different to the one where I have my chemo - was massively overstretched, didn't answer calls and wouldn't schedule my op. (Subject of formal complaint.) I subsequently received about 8 statements from my private health company, all saying £XXXX was due but no action on my part as the hospital had paid.. I haven't got to the bottom of this but suspect my op & week long stay was over and above what the company normally pays.

I haven't used my private insurance for the day-to-day stuff (chemo, consultant appointments) because I'm not sure there is any advantage. The chemo is the same, I prefer being on the ward for it rather in a treatment room on my own because there are more distractions, the nurses are the same..

I agree with you in finding this odd: Medical experts will review your information, and provide written recommendations and information about any alternative treatments.. surely they are not qualified to do this? It is down to your consultants to recommend treatment - not your insurance company.

If they recommend one treatment and your consultants wants to do another one I'm guessing the company would use this as an excuse not to pay.

Sorry, not especially helpful genie

TwitterQueen that's sort of what I thought too. I really appreciate your quick reply. Great advice too on not actually using private insurance for the day-to-day stuff. And the more distractions the better!
IVampire I am inclined to go on my own as well, at least for now. I don't want to have to worry about managing someone else's emotions, I want to put all my energy into looking after myself.

I was also able to claim back money from my insurance company for every treatment I had on the NHS and not private. I received £1000 last year.

Checking in - I'm 4 years post do (BRCA2 +ve, stage 3 on both sides, oopherectomy etc). I had all my stuff done privately, other than radiotherapy.
Chemo was better as quieter, more access to better anti-emetics (ie, not waiting till you are sick!), white cell boosting injections. Also, I didn't react well to part of my chemo regime and it was changed to a weekly dose which my oncologist (same one as NHS) said would have been harder to get on NHS.
People's experiences will be different though.
Seeing some familiar names here, hope you're all doing ok!