Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

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

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

That's good news @Sooverthemill

I had a bit of news yesterday and am still trying to get my head around it.

Had a call from my consultant neurosurgeon yesterday afternoon. Three months after my cancer diagnosis and being told I had a rare form of bone cancer known as a Chordoma, I've now been told that what I actually have is a chondrosarcoma.

I think he was shocked that the original hospital made the diagnosis after just one MRI and no biopsy. I honestly don't know how to feel at the moment.

Has anyone else been in a similar situation?

Congratulations @Sooverthemill! That's brilliant news.
@SisyphusLangClegRocks what does that mean for you?

Apart from the fact I've been misinformed, it might mean I've got different treatment options and prognosis etc. I'm waiting for my Appointment at St. George's to come through so I can discuss things in more depth.

I'm just shocked that after being messed about by the original hospital, they were proved wrong after all. I'm so confused tbh

Great news @Sooverthemill!

So tomorrow I'm going ti see oncology then I've a meeting with the fertility clinic. Does anyone know what ti expect here regarding freezing your eggs?

Got a letter today stating prechemo in next Wednesday and first chemo session is next Thursday. Heart scan is this Saturday. It's all coming at once now. Feel sick just thinking about it. Work are letting me wfh even though I'm home based 🙄 All that crap for nothing really.

I've a week left with my hair. No idea what to do. Do I just donate it? Cut it short now?

Went shopping earlier it's manic everywhere you go. I'm going to scrub and clean out my room this weekend before it all starts.

I wish this year was over already. Fucking bullshit of a year that was supposed to be my year! Ah well such is life. Hope all is doing well xx

That's really encouraging @sooverthemill, brilliant.
So that's two lots of good news this week (BitofFun also).
I'm not surprised you're all over the place @SisyphusLangClegRocks. It's tough getting your head around a diagnosis, then to have that changed must be so hard to come to terms with.
Good wishes to all whose treatment is starting soon x

@peaceanddove does your breast feel less sore today? Hope so.
@Sooverthemill that is wonderful news, I'm really delighted for you.
@Hippiechick162 that's crap about the missing delivery, did you tell the woman in your old house why it was important to you? If not, it might be worth going back and laying it on thick!
@Zorgothslugofdoom your news is good too. @daisypond sorry about your complications.

@SisyphusLangClegRocks that is quite shocking news for you. Any idea how long before you get the appointment at St George's? I think they really should prioritise giving you more information now.
@Nonotmenori, having all this in front of you is horrible and daunting, we're all here to offer sympathy and support, come in, sit down, have a moan when you need to.

@Nonotmenori I have no experience with freezing eggs as they wanted to start treatment as possible (as did I) and my oncologist said it could take up to a few months for successful egg harvesting. I didn’t do any other research.. I wish I had especially with all my friends around me getting pregnant Knowing absolutely nothing so definitely ask at your appointment today I would say you wouldn’t be able to start chemo next week if you sre wanting to freeze eggs.

@Nonotmenori I agree with @squiffy. My DD had her staging on a Thursday and they wanted to start chemo that same day. She was told there simply wasn't the time to delay treatment to freeze her eggs. She was 18. They put her into early menopause in an effort to preserve her eggs. She's 20 now and alive and having periods again but we have no idea if she will be able to conceive. I would ask your oncologist but in my experience their priority it keeping you alive.

Leaflet from st guys and thomases says

"Fertility treatment takes two to three weeks from the start of your period. If your chemotherapy can be deferred for this period of time, your doctor can refer you to discuss fertility preservation. However, there may not be enough time to complete fertility treatment before starting your cancer treatment. There are different treatment options available, and at your consultation, the fertility doctor will discuss which method is the most suitable for you."

Hope this helps. I genuinely know how heartbreaking this is. My DD remains very upset about the lack of options for her and the way she felt railroaded into treatment, ( but she lived, she had very aggressive late stage lymphoma and we were so thought she was going to die)

Hi everyone, looking for some advice from my gurus. I am now 2 weeks post DIEP reconstruction and SNB. Now the diep and breast aren't too bad (imagine the few days after a full on gym session) but under my arm towards the back is really sore. I still can't raise my arm properly and the pain is there all the time...anyone else had this? P.s. it's not showing signs of infection
@Bloodybridget I did but she said she'd thrown it away the day she got it and she gave the flowers away!
@Nonotmenori it's so heartbreaking that you should be having to deal with this on top of everything else. No help just support, thinking of you.
Good luck for tomorrow @Trumpton

Hi @Bloodybridget yes boob much less site today probably because I'm back in the ultra support sports bra. I guess I will just have to keep it on for the next three weeks.

Just in the middle of my 16/18 Herceptin infusion and yesterday I had my one year mammogram and check up with the surgeon. All clear and everything as it should be. It has been a long year but it feels as if I am finally getting there. Just wanted to say a very big thank you to all of you who have offered me advice and support along the way. I am not always good at talking about what worries me in real life so this series of threads has been a very valuable life line for me.

I will still be around from time to time but very best wishes to everyone still going through treatment and especially to those waiting for results I or a clear idea of what is going to happen. I remember only too clearly just how hard that it.

Just popping in to the Patience to wish @Trumpton all the very best for tomorrow.

Will be metaphorically holding your hand tomorrow @Trumpton x

I am not planning anything for tomorrow bless you all .

Rearranged travel I now fly Liverpool on Monday 16th ( not Manchester ) and will get a taxi to Wythenshawe and a relative/ patient bed overnight ready for early kick off in morning of 17th .
Flybe going bust has caused chaos here as IOM Goverment used them for all Patient flights . But all is well .

We had a wonderful break in Wales with our big dance team of Manx dancers and many wonderful ceilis .

Boat journey home was very bouncy and I found a new level of post chemo sickness !

Catch up soon .

It’s been a bit frantic in my life !

@Hippiechick162
My SNB was the worst bit of my last op . But it did improve .
Sending healing vibes . I think I posted about mine in early September.

I am going out in 5 mins but if you can’t find the post pm me and I will dig it out .

Thanks @Squiffy01 @Hippiechick162 @Bloodybridget @Sooverthemill

So I has oncology today and they had a big meeting regarding corona and what's going to happen. Looks like people will be delayed in chemo, but I'm not one of them due to how aggressive my cancer is/was. They gave me a Zoladex injection which I thought was going to hurt, but lucky enough it didn't, but the pain in my back omg! I also had an ecg today.

Re fertility clinic I went to see them and you were right sooverthemill. I've decided to not delay my chmeo as it's important Instart asap. They did an internal ultrasound and counted my follicles? Something like that on my ovaries. They said they're very high considering my age!! I've only just turned 37 😭😂 they said they can't guarantee my periods etc will return or that I've have any trouble etc conceiving, but took my bloods today and will call me 6-9 months after chemo for testing then.

So now I've got heart scan in sat and chemo next week. Oh the fun of the fair!

@Trumpton Good luck tomorrow xx

Good morning, I received my appointment letter this morning following my biopsies last Friday. It's next Thursday at 4.45 pm. I can't decide whether this is quick because it's bad news or whether I am overthinking. I am utterly terrified and the fear has grown steadily over the last few days.

I recently had to have a load of tests for a stomach issue. I have a great GP, really thorough, he tested for absolutely everything including tumour and inflammation markers, literally every condition you could think of "to be on the safe side". All came back 100% normal. I have tried to take some comfort from that but also know that these things are not an exact science. My boob is horrific to look at still and I wish it would all go away.

Sending good wishes to all!

Formidable It sounds good that those GP tests have come back OK. I wouldn’t read anything into the timing of the results appointment. They know people will be worried and it’s in their interest to get people out of the system, hopefully, as soon as possible.

Hi @Trumpton I did take a look and found them. I'm in bloody agony with it! They chop of my boob and replace it with a chunk of my stomach and yet I'm whining about my arm...utter madness! Lol.
@TheFormidableMrsC don't read into appointments times. Things tend to move quickly as they can allay fears or sort stuff out! Good luck

Aw @Hippiechick
I cried over mine a lot but have yet to face the mastectomy.
DH has had awful trouble Booking a flight to visit me but has managed to get one one next Thursday morning and will stay over near Liverpool airport and fly back in time for a late start at work on the Friday .
It’s blowing a hoolie here today , I don’t think anything would get him back on the boat after our horrendous trip home on Monday !

Been asleep most of today but managed to alter two pyjama tops that were “ over the head” to button down the front ones before I gave up and crawled back to bed .

My three month check up next Wednesday has now been changed to a phone call, although I will still get bloods done the day before. Not surprised.

bridget I'd be relieved at a phone consultation. I'm very concerned about going near a hospital or doctor surgery atm. Where do you get bloods done?
I have my radiotherapy follow up on 30th march, I'm hoping it'll be changed to phone / skype.

@Skap bloods at the hospital! I'll go first thing when it's fairly quiet.

Meeting with oncologist today. Results back in heart function is fine. MRI showed no other lumps in the boobs. Actual tumour size is 1.8cm. Treatment plan is AC x 4 fortnightly (with monitoring to check tumour size) then 12x taxol weekly (they may add in carboplatin). Break then surgery. Then RT. Oncologist was typically Dutch (very matter of fact). I had a massive wobble before going. Its as if I'm not in my own body. Its not happening to me.

My bro found some of my mum's medical notes. It seems her BC was a different type to mine ie hormone positive. Will have wait for genetic testing to see if its hereditary.

DD was very unsettled tonight. She is a very intelligent little thing so is picking up the sad/sttessed vibes I just want to see her grow up. She is amazing!