Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

@catmomof3 it's all so draining isn't it.

They might give you a plan tomorrow but it might not be until you see your oncologist as you've got to give written consent to treatment and they like to talk it over. It's fairly standard treatment for stage 2 and 3 from what I can gather.

Will be thinking of you tomorrow x

Hello everyone, how are you all doing? I've not been on for a while but am So Stressed right now I need a rant and I know you will understand. My 3 monthly scan results were today. A telephone appointment. With no time. It is now 5.49pm and I have been on high alert since 9am and STILL NO CALL. I am literally vibrating with rage and stress.

Why do they think it is ok to do this to people? I understand they are busy but this is taking the piss right? I just need to know if it's stable or changed. But I needed to know 6 hours ago. I actually feel sick now with stress.

Posting here was obviously the kicker as she called shortly afterwards and told me the scan was stable yay!

That's great news @AGreatUsername . My SIL has to go through the quarterly scan routine, and it's tough every time.

@AGreatUsername that's good news! Time for a small celebration methinks.
I spelled out to my surgeon how unbearable it is waiting for scan results. As a result she phones me as soon as she sees them! It's a great service and I really appreciate it. Worth a try?

Thank you. Telling me about your experience is really helpful.
I spoke to the breast care nurse today and she assured me that the surgeon and the team would go carefully through treatments and options with me once they receive the MRI results.
The care I have received at both hospitals has been excellent.
I was just shocked that the oncologist (lovely lady) was recommending mastectomy.
I have been very unwell after the last 2 sessions of chemo so not really in a good place.
My neuropathy has got much worse and that's one of the reasons they've cancelled the last few sessions.
I guess I'm worried about being lopsided if I have a mastectomy.
Daft really because in the grand scheme of things Ineed to suck it up.
I know there are others on here facing challenging times and my concerns are not as important but as I live alone with grown up children scattered country wide it tends to play on my mind.

@Zoopet I had a lumpectomy. I was very nervous about it but my surgeon was very keen. I am not at all well-endowed and had to have 6 months hormone therapy to shrink the tumour enough for my surgeon to feel confident she would get a good enough margin and that I wouldn't look odd.

Before the surgery I was still given the option of a mastectomy and I really dithered but the prognosis was similar for both types of surgery and I wasn't afraid of radiotherapy. There is a statistic for how many patients undergoing WLE have to have a second surgery because of unclear margins. My particular surgeon had a much lower rate of that than average.

I'm super happy with the results. The affected breast is a tiny bit smaller but if you didn't know, you wouldn't know, ifswim? And she went on through my nipple so I have no scars at all.

But I was happy to be guided iny decision by my surgeon and had she been less confident of success I would have gone for the mastectomy.

@Zoopet so sorry to hear the chemo was so hard on you. Were you having it to shrink the tumour?

My friend had very petite breasts and her surgeon recommended mastectomy - due to the size and structure of her tumour she would have been left with limited tissue for a repair job like I had. She also didnt want to go through radio.

Do you feel up to asking the oncologist why she recommends mastectomy?

It's in NO WAY daft to worry about being lopsided! When I went through the outcome photos, I cried at the thought of looking lopsided or having one wonky breast. The cosmetic outcome upset me way more than the diagnosis itself. And that's entirely OK.

Dont go thinking that you're only allowed a certain level of distress because others have it even worse. It's cancer, it is a scary and devastating diagnosis and the treatment is hard. Sending a huge hug xxx

Still no phone call about what happened at the MDT this morning, maybe they couldn't discuss my case because the MRI results were not ready but I would have hoped my nurse would of called me to let me know esp after she said last week I would be discussed this Friday and she'd call me after 🤷🏻‍♀️

I also woke up at 2am worrying about today and couldn't get back to sleep so gonna be very annoying if nobody does call me today.

Ok so I just spoke to the nurse, the mri results hadn’t come back yet but the ct scan did show the mass and that it has gone into a few lymph nodes. No staging yet also no size but looking to me like stage 3 due to lymph nodes and how it’s encroaching into the vagina. She said it’s treatable and to not worry. She’s referred me for the PET scan and will call me next Friday incase she needs to chase anything up. She said things are moving quickly and to not fret.

@catmomof3 thats ‘good’ you’ve got more of an idea what’s happening now, still frightening but knowledge is power. The PET scan gives the full information of where things are, if surgery to remove the lymph nodes is an option rather than chemo/radiotherapy. You’ve done brilliantly and hopefully you’ll get your PET scan asap.

The nurse said surgery isn't an option for now so going down the usual route. I think I'm looking at stage 3C which in all honesty scares me so much. Just cancelled my Tokyo airbnb and Disney's Miracosta and feel so sad. I want to have BA hold my booking so I can rebook for next June but in all honesty I'm scared I won't make it.

@catmomof3 sorry you didn't get the full picture today but they are still saying curable which is great.

Hopefully they will be able to confirm it all up next week and get you sorted with a plan.

Don't write yourself off at this stage in the game x

@JlL2013 Yes she said it's treatable and they will throw everything at it. I can't believe it's got this bad though, if only I sucked it up and had regular smears. Praying that it doesn't spread anymore 🙏🏻

@catmomof3 it's apparently slow growing so you should be fine in the interim. The treatment is generally short but very intense. I think the treatment for stage 2/3 is pretty standard and surgery isn't a viable option, even after treatment.

Stay off the Facebook group, it's very American oriented and you always get worse case.

@JlL2013 I would be very surprised if they offered surgery after as it doesn't seem like the norm. Just want to get started so I can blast this tumour away and stop having aches in my pelvic area. At this stage any aches and pains makes me think it's spread but they did a ct scan of my whole chest so if they had something there I'm sure the nurse would have said so.

@catmomof3 sorry that was me confusing the issue about surgery! I have cancer in groin lymph nodes and originally we were looking at surgery.

@Whatevershallidowithmylife I think life would be a lot easier if we could just cut it all out lol. I hope you are ok though 💜

@catmomof3 we don't get surgery with stage 2/3 I think it runs the risk of the cancer cells going elsewhere in the body if disturbed by surgery. Unless it's stage 1 they don't offer surgery.

The pelvic pain will go really soon after you start radiotherapy, which hopefully will be very very soon.

@JlL2013 I hope so because the pain wasn't like this bad until my biopsy, Feels like it triggered the tumour. How have you been doing?

@catmomof3 yep this bit really is the worst. You imagine all sorts going on.

I'm good, although the menopause is kicking my arse a bit, started HRT three weeks ago so hoping for some improvements soon. I'm 18 months out now so life is largely back to normal, whatever that is.

@JlL2013 Oh I am not looking forward to the menopause starting, but if that what needs to happen to blast the tumour away it is what it is.

@JlL2013 you are lucky to be able to take HRT. Mine has been stopped, due to hormone sensitive SBC. It's fucking brutal. My whole undercarriage is burning ( VA) and it's shite!

I'm home after another chest drain on Wednesday☹️ Another brutal procedure and it hurt like fuck! They offered me morphine on discharge and I was like" no I will be fine". WRONG, today it aches to shit! No news re: my brain scan which was 4th oh well, no news is good news and all that?

@Zoopet how are you doing ?
I had a left mastectomy, 14 years ago. I was lopsided for 2 years, until reconstruction. I tried a prosthesis and couldn't get to grips with that or being flat. It's such a personal decision and a tricky one at that. Sending you support from afar 🌺

@Zoopet when I'm in less pain, I will explain why I had a mastectomy xx

@Enigma52 yep that is true, I need to remind myself of that sometimes. Chemical menopause is grim, not something I thought I'd have to deal with in my early 40's.

Chest drain sounds really painful.

No news does sound like good news on the brain scan.