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

Today's latest twist. The private bupa approved consultant who I saw at a private hospital has written a brief new letter to confirm this surgery is part of my active breast cancer treatment, not to prevent further cancer. Hopefully bupa will accept this. Also he has actually taken the trouble to phone my oncologist, first time I've come across doctors actually speaking to each other. Oncologist has confirmed I need to be made post menopausal, either by surgery or by extended use of zoladex over 6 months!! The very thing everone has said is not possible. I've gone through all this hassle to arrange surgery because zoladex has not been an option for more than six months and now they've done a complete u turn. I'm losing the will to fight.

Thanks nicky I've got full access to the bupa oncologists and cancer nurses, unfortunately the approvals dept have not spoken to them to discuss my case. It's being decided by a nurse who is not a cancer specialist. I'm not sure where to turn next but thanks for your suggestion.

I hope everyone manages a decent weekend, more sleepless nights for me I think.

mrsrhod that's just appalling. Did you have blood tests initially for hormone levels when you were switched from tamoxifen to anastrazole? I think I'm at the beginning of the same journey, they thought the tamoxifen was disguising the fact that I was menopausal so switched me to letrozole but I had almost exactly a year on that before the period arrived this month. My bloods still show post meno ranges. My appt is on Wed for all the test results , I shall bear your situation in mind.
Glad the doctors are talking to each other, but how ridiculous to suggest you can continue the zoladex after insisting surgery was the only option??! I'm appalled for you.
It's wet, cold and miserable here, DH is out on a jolly so the kids and I are settled on the sofa watching a Snoopy film.
Best wishes all.

Waving to all and sending love. Attempting a catch-up...

Hi pepper, yes I had a blood test in may last year and my oestrodial level was below 50 which is apparently as accurate as it gets and is the correct range for menopause. I had the test repeated in about November and it's still the same. Tamoxifen was suppressing my periods and they came back after five months off it. Five months when I was effectively on the wrong medication. Have you had a pelvic scan and hysteroscopy? I had both and the findings were perfectly normal pre menopausal endometrium. That's when they realised the mistake, they didn't want to believe it. I don't think they've really seen this happen before, certainly not the gynaecologists.

I now don't know who to believe, I'm all psyched up for surgery and now they're saying I don't necessarily need it. I have at least two letters from my oncologist supporting surgery, letters from 3 gynaecologists supporting surgery and a 4th private surgeon who is now questioning it after agreeing to it in my consultation. A concern, amongst many, is that I could continue with zoladex until May next year, come off all treatment and find at 55 that my periods come back again. Given that they were horrendous and I had a mirena coil before all this started that would be awful. I feel I'm going round in circles.

mrsrhod I cannot begin to imagine how you are feeling with all that's going on but I send you hugs and best wishes.

Congratulations to those who have had negative cancer results (magbob, whojamaflip & mrsreynolds I believe ) That is such good news.

Leslie I hope you are doing ok.

I am recovering well following my lobectomy. I feel a bit tired but nothing major. I manage to get out for a walk most days which helps. I get the results of whether the cancer has spread on 16th Feb. Keeping my fingers crossed for good news.

I have been spending less time on mn but I wanted to check in and see how you are all doing.
Positive vibes to all

So sorry for everyone going through cancer.

I'm just at the testing stage but appears highly likely I have a vaginal-bladder fistula which can be linked to grade 4 cancer. I have none of the normal causes though my doctor, who is super nice, is doing his best to persuade me it won't be but even he says it's odd. Bone pain since Sept and most of the symptoms of grade 4 cancer. Just hoping bone pain is menopause coming on early but only other explanation that can find for fistula is my childbirth experience 12 years ago and then took 11 years to cause a problem. I want to believe it but hmm. Very worried especially for my little boy who is ASD and totally Mummy obsessed. Trying my best not to think about it sometimes successfully, sometimes not. Got summer holiday booked to Australia but now wondering if I will be alive then. I just want to plan if not. Cervical or bladder would be the likely cancers though as vaginal-bladder fistula goes to two areas it will have spread. Sorry for my panic.

Hi Penguins

I don't know much about vaginal bladder cancer so I don't have much advice, but even if it is stage 4 that doesn't mean it's a death sentence. I don't remember who but I'm sure there was someone on this thread who was stage 4 but is now in remission, there's also a couple of people on the Jo's Cervical Cancer Trust (I have cervical cancer) website who were stage 4 and are in remission and alive over 8 years later.

But stage 4 is worst case scenario, and I know that nothing I say will stop you worrying but there's nothing at all you can do until you get your results back. Do you know when you will get your results?

Thanks very much for replying Purpleunicorns I haven't had the tests yet, I have got private medical insurance so can speed it up but GP advised blood tests first and see what they show and NHS is arranging cystoscopy which is first of many tests. It seems to be very rare to have a vaginal bladder fistula though doctors are expecting to find it so its hard to get information though some sites are quite scary just giving two causes one as cancer and one I don't have. The only possibilities I have been given are problems from childbirth 12 years ago after 11 years or cancer at stage 4 but I am hoping there's more. Two doctors have said they think its unlikely to be cancer though one seemed to be basing that on I have had symptoms for a year and I am not dead. 😂 Trouble is I have became quite a bit more ill since September. I can live with that as long as its not life threatening. Work have been great and I wfh 4 days a week.

How are you getting on? I remember chatting to you before, probably under a different user name, when you were off for tests for cervical cancer saying I had the same but they didn't think it was cancer. I am really hoping they didn't just miss it but smear this year was clear. 4 years of irregular bleeding though.

The waiting around is the worst stage of it I've found, once you have a treatment plan in place it's easier to deal with knowing that something is actually getting done about it. They're always coming up with new trials with treatments so it's worth asking about them as they seem to have a better success rate.

I'm good at the minute, I was diagnosed with stage 2b cervical cancer which had spread to the higher part of my vagina. I've had 25 rounds of external radiotherapy, 4 internal radiotherapy and 5 lots of chemo. It sounds brutal but it was nowhere near as bad as I was expecting and I've managed to work all the way through it 😊 I go back for a scan in March to see how well the treatments worked. Fingers crossed I feel fine so far

Glad to hear you feel fine though that does sound brutal. I am impressed you've been able to work through it, very dedicated though I guess having something else to think about helps too. Have you got children yet?

I would like to know one way or the other, hopefully the other though maybe ignorance is better than stage 4, but I would at least like to be able to plan and to know I had a plan for the children. I am already planning DH a new wife who will be very kind with DS who is ASD and very cuddly, DH doesn't get a say in this. 😂

Sorry for asking about children, my brain seriously isn't working at the moment. Hope you have already had them.

I've got a 15 year old son from a previous relationship, I only got married in August and would have loved another but staying alive for the son I have was more important than possibly having another. And too be honest the thought of starting all over again with the nappies and sleepless nights was a bit terrifying 😂 my husband is brilliant with my son but luckily he was never too bothered about kids.

Seriously it's far too early to be thinking about your husband meeting anyone else, the odds are in your favour and even if it is worst case scenario you could still live with it for years yet. Do you have a time scale for the blood tests etc? If they suspect cancer it should be with 2 weeks.

Treatment was nowhere near as bad as I thought, the chemo made me feel a bit crappy but I didn't even lose my hair (although I bought lots of hats as I was expecting to be bald) the downside was I still had to shave my legs 😁

Glad to hear you've got a son and I wouldn't want to start over again either. I did want a third a while back but so glad now DH said no. I know quite a few men who aren't overly keen on children, including complaining their child gets too much attention at home, no prizes for guessing whose not getting enough. 😂

Blood tests next week, gynae doctor 6/2, no date for cystoscopy yet, it maybe a good sign they aren't rushing that. On the other hand I had to point out to them I had a fistula and they went yes you're right, that changes everything.

That's good your hair didn't fall out, black tights are great.

Hello everyone

I've been away for the weekend with a cancer charity. It's been fantastic. Now I'm trying to catch up with everyone!

mrsrhod bloody hell! I hope you get a definite answer about it all soon

wombat I'm so glad you're recovering well. Walking is great. I'll keep my fingers crossed for your results

Penguins sorry you've got this to worry about. I hope there's a non-cancer explanation for it and that they can sort it out

magbob and whojamaflip excellent news :)

Waving to everyone and hoping you've had a good weekend

Leslie did you manage the 5k walk ok? I think the weather was pretty good this weekend wasn't it? Glad you had a great time.

I've been zipping up and down to Exeter this week, bringing DD3 home for some TLC as she's had tonsilitis.

Poor DD3. I hope she is on the mend now I'm sure some TLC will have made a huge difference. I remember the first time I was ill at uni and realised I still had to look after myself because my mum wasn't there! :)

I didn't manage the full 5km I'm disappointed, but trying not to be hard on myself. Unfortunately it had a steep hill so I had to skip that bit. My breathing is still not great and I struggle with a flight of stairs, so I didn't think it was safe to attempt it. I know it was the right decision as even on the flat I had some coughing fits.

Body said 'no'. That's all there is to it really! We have to listen to our bodies and accept the limitations unfortunately. Nothing as bad as misbehaving lungs but I was up at 6am trying to trim disgusting toenail that was hurting a lot.

Yes, I know, I know, I have been threatening to go to a chiropodist for months and I will actually do it this week. It's such a poxy small nail though I thought i could ignore it... Big toenail has gone quiet on me - I think it's mostly dead. I try not to look

Thanks Leslie Glad you had a nice weekend and you did well to do some of the 5k. I haven't moved from bed all weekend and even DD who is quite active normally said my Fitbit is saying I've done 7 steps and I am supposed to do 10,000 a day. 😂 That's why I don't have a Fitbit.

Leslie I’m glad you had a lovely weekend, I may book onto one of these in the future.
My Pet scan showed no further spread, which is great, although they did confirm that my cancer is inoperable, stage 4. I haven’t seen an oncologist yet, so I have no idea what my plan will be. For that reason, I have not told my children yet.

My receptors have changed a bit, still Her2+ but now ER/PR neg. Looking at the drug prescribing guidelines, I think I am going to struggle to get any Her2 targeted therapy. Kadcyla is licensed for people who relapse within 6 months of finishing adjuvant Herceptin. Pertuzumab is licensed for people who relapse more than 12 months after finishing adjuvant Herceptin. Not quite sure where that leaves me because I relapsed after 9 months. My only option is to go on a non-targeted treatment, demonstrate progression of disease and then I will get Kadcyla. But given that I had such encouraging results from my Pet scan, that is quite hard to take.

Sorry to hear that mySilly I cannot believe they will think it in your best interest to let the disease progress before offering you treatment that neatly ticks a box, especially when as you say, the cancer is contained at the moment. How old are your children?
twitter did you make your chiropodist apt yet?
leslie hope you're not too tired after your weekend, sounds like it was well worth it though
Good luck to all waiting tests or results this week.

Unfortunately the people making funding decisions are not the oncologists that treat individual patients. In these cases, oncologists hands can be tied.

Mysillydog sorry to hear it's definitely stage 4. Welcome to the extra exclusive branch of the club. I'm still hoping we might get badges eventually... When are you seeing your oncologist? Hopefully there will be some flexibility or other options available when you speak to her/him

pepper sooo worth it :) I'm not as tired as I expected actually. How are you?

Penguins a weekend in bed sounds very sensible under the circumstances

Twitter I hope the chiropodist can help your manky toe. It does hurt a bit when they're poking around, but the relief is amazing!

Mysillydog So sorry to hear its stage 4 and you have to tell your children. I hope you can get the drugs you want. I've had a doctor break the rules before though did say he would get a letter saying he could be sacked.

Thanks Leslie, hope you are OK.

Talking of badges, these cancer on board badges might be useful to some of you :)

Mysillydog sorry to hear you're crappy predicament , I hope you get to see your oncologist very soon and get some more reassuring answers.Hopefully they may be able to work something outside the strict boundaries. My fingers and toes are crossed for you. How old are your children?

I'm going in for my hemicolectomy tomorrow..packing my hospital bag and slightly concerned about how much I'm taking in. I do take a towel with me , yes?