We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

Planned I have been thinking about you all evening and will have you in my prayers before I go to bed. It's just not fair. Hopefully they will give you chemo and that will give you some time with your girls. How old are they?
I can't speak for myself as I am constantly overwhelmed with the fear of dying, but my auntie died and left two young kids, and they coped a lot better than the rest of us. And she will always be their mummy and so will you. There's nothing to say that can make it better. Try and have some rest tonight xx

Planned I’m so sorry - I am thinking of you

No toast or tea, I'm not allowed food until tomorrow. Just lots and lots of painkillers. It hurts as soon as I try to move an inch, the nurses are fab (as always) and are giving me all the pain relief they can but it doesn't seem to be making much difference. I'm hoping tomorrow's better

Oh dear, that doesn't sound fun purple I hope it feels better today (& you are able to eat something soon)

How are you this morning planned? Did you manage any sleep?
I have been thinking about you overnight. I hope you get some good news today and if possible you can go and see your family again if you have to wait until Friday for anything to happen.

Thinking of you too planned

purple I hope you're feeling a bit brighter this morning and that you feel up to some tea and toast soon

Miles, noodles and pandora good luck for your chemo today

ranout is it your CT today? Good luck :) luckily they don't involve cod liver oil! Though if you're having contrast injected then it gives a strange warm feeling, mostly focused in the groin that can feel a bit like you've wet yourself

Sending love to everyone this morning

Oh @plannedshock I really hope your allowed to be at home for as much as possible and they get a plan together for you ASAP
@WhatWouldLeslieKnopeDo how do you remember everything? Yep I'm having a clip put on my lump in my breast around 11 then CT around 3. I'm really fortunate that the hospital is around 15 mins away so I'll probably come home in between. I may take my own cod liver oil capsules just to see what their faces do! I'm afraid I've reverted to a lot of black humour at present.
Good luck to everyone with chemo today

Ouch!Woke up this morning feeling like a horse has kicked me in the chest.
Apparently the first chemo is the worst so I just want to get this over and done with and get tomorrow which is results day from all my tests.

Doctors have just been round and I don't have an Ileostomy, I have a sigmoid colostomy instead. He said it's better for me and easier to deal with. Although I spent all day yesterday googling about Ileostomys The pains still pretty bad but hoping I'll be out in the next day or 2

Good luck with the scan Ranout, take a bottle of water as it gives me a really dry mouth

TQ hangry does not even come close. I've had 1 soggy weetabix and that's all for now. Hope you manage to find a chemist today for your antibiotics. Could the doctors ring around to see where has them in stock rather than you traipsing around looking for them?

purple that's probably a good thing - the more bowel you have left "in action" the better! A lot of the practicalities are similar between the two types, I think, but I'm not really at all knowledgable about colostomies. Hopefully the stoma nurse will visit you soon to answer any questions :) good that you've managed to eat something. Though be careful with stuff like Weetabix to begin with - it's quite high in fibre... I hope your pain improves quickly

pandora I think the first is often worst just because you don't know what to expect. It's worth keeping a brief symptom diary for future reference :)

ranout good you can go home in between. I hope both go smoothly :) (and I have magic spy skills, or something like that)

Pandora take it easy and drink as many fluids as you can to help flush it out. I'll say good luck for tomorrow now as I'm forgetting everything at the minute with all these drugs they're giving me

Leslie the doctor said it's a lot easier to manage and less chance of leaks so I'm happy with it, my mams just messaged me to tell me she's ordered a stoma bag with unicorns on Hope your breathing is behaving itself

Sorry side tracked by DC yesterday so didn't get chance to thank those who offered replies and reassurances.
Had my letter through yesterday confirming appointment and giving more info. Seems my hospital don't use mammogram or scan unless absolutely necessary so told to expect to be there all morning until midday as they will take a sample of it.
I was surprised to see most of the doctors were male, so as I had to acknowledge the letter I asked if I was on the list for a male doctor. To be honest the lady on the phone sounded really harassed and was rude as a result. She said that yes, I was seeing a male as I'm "not a priority" for religious reasons to see a female. I asked her if it was possible to speak to someone else and luckily there was. She was far nicer, I explained I'm terrified of being assessed in an intimate area as I had a dreadful experience with a male consultant whilst pregnant with my DS and I've avoided seeing males since. She put me on the ladies list thankfully. I did mention my needle phobia but apparently scans and mammogram are costly and my being under 40 it's just what they do.
Just waiting now for next week.

Hoping everyone is keeping well as they can and positive x

@TheOnlyLivingMumInNewCross I can understand your reluctance with a male doctor etc but I can say hand on heart that I've been dealt with fabulously so far. I've just been for tags on my tumour and there were 3 nurses in the room, the radiographer who were female then the I assume doctor who performed the actual procedure. Throughout he made sure I was comfortable, understood was was going on etc. I'm not one for needles either but just close my ears and deep breath!

I also only saw male doctors when I went to the breast clinic, they were all lovely and totally professional. If you ever do have to see a male doctor and you aren't comfortable you can take someone with you

purple you can find almost anything on the internet! I hope you're more comfortable now

Only I'm glad you've got your appointment sorted

ranout glad the tagging went alright. Hope the scan was OK too

@WhatWouldLeslieKnopeDo thank you. I'm obviously special as I have double asbo tags! My lump is torpedo shaped so one tag on each end.

CT Scan was also fine, so for anyone starting their journey it was something I was apprehensive about, but was in fact ok.

We're going away for the weekend so I'll check in on everyone on Monday. all

Hope you have a lovely weekend away Ranout

Thinking of you Planned have they told you what happens now? It's usually more chemo which has a good chance of shrinking it

I'm fine as long as I don't attempt to sit down, stand up or cough

Hi everyone. Hope you don't mind me popping back on. I had a lumpectomy three weeks ago and went back today for what I thought was the final result. Turns out it wasn't final at all. I had a phyllodes tumour, quite rare apparently, so the MDT have had a disagreement about how much margin of healthy tissue should have been taken.

My consultant says he thinks he's taken enough tissue but the doctor at the hospital where I had a previous mastectomy on other breast says they should have taken more and wants him to go back in and take more. My surgeon says he will do some research and if he thinks he needs to he will operate again. They are going to do frequent ultrasounds etc in the meantime. It isn't cancer yet but could turn into it so not sure how to feel. My surgeon is confident it will be fine.

Thanks for reading. Hope it all makes sense. Just wanted to put it down in writing. My head was reeling when I came out. He read out the whole pathology report to me!! Fingers crossed for the future for everyone.

Ow ow Ow! They couldn't access my port to start with so after a lot of jiggling and poking they managed to get blood from it. Then the first set of bloods clotted, so had to wait another hour and a half. I've only just got home from the chemo unit. I'm exhausted.

Back to the unit tomorrow for the results of the scans.

Planned I've been lurking. I'm so sorry to hear your news. That's shit.

TheOnlyMum you get a local anaesthetic for needle biopsies. I'm under 40 too and it was necessary for my breast cancer diagnosis.

Planned have just gone back and read some more of the thread. So sorry to hear your news. I lost both of my parents to cancer and I've had it before also. Thoughts and prayers with you and your family.

LivingMum I had a biopsy, my tumour was quite deep but I couldn't feel it due to the local, which itself was less traumatic than expected. Good luck with that. My surgeon was male and very good - I never saw him without a female chaperone in the room. Sorry to hear you had issues during pregnancy, that's really shit.

Planned I am so sorry to hear your news. I hope you get home soon and crack on making some memories your DC can cherish. I lost my mum as a teen and all I have are a couple of photos; if you can bear it, take some videos and write some letters they can keep. Also perhaps look into some ongoing family counselling for them. My mum has been gone nearly 30 years and I think of her daily. Cancer is so fucking awful, massive hugs to you

Just popping in to say so very sorry to Planned, sorry its not much consolation but a little boy in my son's class with special needs had his Dad killed in a hit and run and everyone has stepped in to look after him and I am sure they will for your little ones. Take care. Love to everyone else.

ranout have a great weekend

mrswhiplington sorry it's not as straightforward as you'd expected. It's good your surgeon is researching it. Hopefully you'll get a definite plan soon

Pandora argh how frustrating! Hopefully next time will go more smoothly... good luck for tomorrow

Minnie all the best for tomorrow

Waving to everyone

Good evening all.
I posted on these threads about 6 months ago but just wanted to update you & ask for a little advice if a may.
I originally visited my doctor due to some post menopausal bleeding back in October 2017, I was 54 & had gone about 13 months without a period.
I was sent for ca125 blood test & a internal scan. The blood test was negative ( 9 ) but the scan revealed a small 1cm cyst.
My womb lining was also just under normal range so they proceeded with a biopsy of my womb lining which thankfully came back normal. I then had another blood test & scan 4 months later ( march 18 ) which showed the cyst still at 1cm and ca125 still quite low at 8. They said they’d see me again in 6 months. However, literally a week after my last hospital appointment back in March I had another bleed so contacted them just to let them know. They brought forward my scan which showed womb lining normal, ovaries small, but apparently due to gas they couldn’t see the cyst?
Ca125 again normal so they’ve discharged me saying if I have any further problems I should contact my gp - now I know i should be happy with this but I can’t help thinking because they couldn’t see the cyst on the last scan due to gas what if it’s still there and has grown?

Basically, what I’m asking is, would the hospital discharge me if they had any doubts I could have cancer?
Thank you so much for reading - love & support to you all xx

Diamond
A CA125 of 8 is not "quite low". It's practically non-existent. Anything below 35ish is completely normal. And you've had 3 of them all giving the same result. Obviously no test is infallible but I would say those results are pretty definite.

Also, a cyst is not cancer. It's just a cyst. The NHS website says "They're very common and don't usually cause any symptoms. Most ovarian cysts occur naturally and disappear in a few months without needing any treatment."