Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Waves to all. Hello newbies Good luck to those waiting for results.
I saw new onc today and as I expected there are few options left. He will try to get me on an immunotherapy trial and is contacting various people/hospitals. Failing that I can have more chemo but usually I relapse soon after any improvements
Anyhow, I am still feeling ok and off abroad for a few days to get some sunshine. and to all x

#WhatWouldLeslieKnopeDo

MO - Medical Oncologist
RO - Radiation Oncologist

My Turkish language skills aren't good enough for me to go alone so I need to wait so that my husband can come with me as my medicsl onc's English is about as good as my Turkish
It's certainly added extra stress and complications going through this here where I can't speak freely to mefical staff!
Thank you so much for taking time to reply

chewing I am glad the new onc is better than the old one. Though it's absolutely disgraceful that the other one didn't find those options Sorry I can't remember as it was discussed a while back, but have you/your team looked into the Care oncology clinic trial? I read somewhere about it possibly making chemo effective again when it has stopped working, but there's not much information about it all! Anyway fingers crossed you can get onto the immunotherapy trial :) and have a fantastic holiday!

Ah sorry :) it's interesting that you have two different oncologists. I think most here just have one and a surgeon. If it's been that way a while then I'm sure one day won't make too much difference anyway. Could you maybe cover it with something like gauze that's a bit looser? Have you lived in Turkey long? It must be very difficult not being able to communicate easily with your medical team

Hi Leslie
Thanks so much for directing me to the link. Interesting. I had almost reached resignation regarding my proposed mastectomy but I seem to have regressed today to my earlier position of denial and every fibre of me is screaming don't do it. Perhaps my reaction today isn't as irrational as I thought. Lots to think about so thank you to you and amber.

Hope you had a good weekend camping despite the weather.

to everyone

@ WhatWouldLeslieKnopeDo

Yes, been here off & on for 18 years, permanently for the last 3 years I think.
I used to speak Turkush OK'ish but my husband only speaks English to me so I've kind of lost it. Plus I could never cope with mefical matters in this language.
My RO is a bit of a dish so I still keep in contact 😂 Only joking. About the contact at least 😉 If the rads hospital wasn't 4 hours drive away I'd have gone back to ask him about my nipple as his English is perfect.
Unfortunately there's no such thing as a breast nurse/team here so no one to ask niggling questions to and my MO has over 300 patients on the go at any one time so I don't like to bother him unnecessarily, that's why I've left it this long. But my scheduled follow-up appointment is 4 weeks away and I don't think I should leave this to go on another month.
If I put a loose dresding on the nipple/scabby crust just rubs too much and is painful so it's more comfortable to have it under a snug plaster.

Hi Jg1, sounds like a painful problem you have there. I had 15x rads and my nipple was incredibly sore and I was very glad not to be having more so I can imagine the pain. Could it be that it just hasn't had a chance to heal if you've had it constantly covered over? I can't account for the swelling you still have though.

You probably started taking anastrazole at a similar time to me, I'm about to finish my third pack of tablets and saw my gp yesterday about the side effects, particularly my blood pressure which is sky high. What issues are you having? My list is stiff knees and ankles, pain in legs generally, creeping feeling/pins and needles in legs and feet, swollen fingers, hot sweats, hair loss, fatigue, difficulty sleeping. I found tamoxifen easy but this has floored me. I've been given the option of coming off it and returning to tamoxifen but want to get the blood pressure sorted first. Still waiting to hear about the bone scan.

mysillydog that was interesting to read and I expect it's what I'm going to hear next week. Has this actually happened to you now? I'm not sure if my hospital has implemented this or is proposing it. I have all your concerns and I think it's dangerous. I'm lucky to have access to bupa so I may have to start using it to just to get proper checkups for my remaining two years but not everyone is so fortunate. If there are opportunities to comment I will be doing so.

Thanks for taking the time to respond @mrsrhodgilbert. My list of anastrazole side effects seem to get longer day by day! I have fatigue although nowhere near as bad as it was through chemo or rads but it's definitely still there. Joint pain in my right shoulder, elbow, wrist & fingers. Swollen fingers. Swollen toes(!!) on my right foot & swelling from the knee down on both legs. Back and hip pain. Blurred vision. Hair thinning (just as my post-chemo hair was getting lush and thick). It's hard to tell if I'm having any hot sweats because it is so hot here that every day feels like one hot sweat! I have terrible mood swings and can rage or cry at the drop of a hat. I have a history of depression and it worries me that I'm starting to get the same apathy that went with my issues.I just realised that my blood pressure has not been checked since surgery. Maybe I should ask about that tomorrow? The way I feel at the moment if ny onco' can't or won't switch me onto something else then I'll have to stop taking them because the thought of living like this, every day for the next 7 years is just too much.
As for my nipple, if it's not covered then it catches and hurts more. Hopefully he'll sort it out tomorrow for me.
Good luck with your blood pressure, I hope it comes down and you can go back to tamoxifen as it sounds like that was much better for you

Hi again, sounds like we're experiencing similar things. The gp gave me a very puzzled look when I mentioned hair loss in my list of woes, but it's a known problem. I should have also mentioned memory loss I think because actually tamoxifen wasn't trouble free. I had quite a few gynaecological problems with it and was recommended to have a hysterectomy which I have sidestepped so far. That's a big reason for trying to persist with the anastrazole. Plenty to think about and I only have two years left, not 7. Will you report back after your appt tomorrow? Good luck with it, hope you get some answers and yes to the blood pressure checks.

@mrsrhodgilbert

Ahh, hysterectomy vs Anastrazole. That's a biggy and a lot to weigh up
Yes, I'll definitely check-in tomorrow and report what he says. Mind you, I probably won't know half of it as my husband tends to give me the edited version when he translates for me

So I've got Stage 2, Grade 3, triple negative metaplastic breast cancer.

Surgery on Monday, he said most likely would then have chemo.

amberlight if you're here could you give me the facts? I hadn't heard metaplastic, he said it was rare, I admit I googled and shit myself up.

I need 14yrs to get my youngest to adulthood.

Thanks!!!

Argh, I killed the thread!!

Hi Overeggedit

I'm sorry you've had crap news today. I'm afraid I don't know anything about triple neg metaplastic BC but I have seen a sub-forum on the Macmillan BC forum that is for triple negative BC. Not sure if it's something you'll feel like looking at but I've found some of their other discussions in their main BC forum and the under 50 forum helpful for practicalities.

I'll be awake fairly late tonight if you want to rant.

overeggedit
This thread is invincible - do not fret

I'm so sorry you've had bad news. It's shit isn't it? I cannot help you with anything to do with BC I'm afraid. I'm ovarian cancer myself, stage 4.

You are where I was 4 months ago - shattering news, don't know what's happening or what to do. There's no use pretending everything is fine - it isn't. But you will find so much support and help on this thread. And the medical staff really do know what they're doing - unfortunately they're all very well practised and incredibly knowledgable and they will support you every step of the way.

Carry on posting and ranting. It's what we do on here.

Jg1 good luck tomorrow though not great that your husband censors things!

Overegged sorry you didn't get better news. Hopefully you feel a little better for having a definite plan? Best stay away from Google - try Breast Cancer Care or Macmillan for more accurate and not alarmist information I don't know about metaplastic, but quite a few on here have had triple negative. Also don't worry, you won't kill the thread. It goes quiet sometimes, but only because people are having treatment or busy in real life.

The anastrazole sounds grim mrsrhod

I had my latest scan results today - tumours are still stable. It's been over a year since my recurrence was diagnosed. I actually feel much better now in general than when I first started treatment, mostly thanks to my bowel surgery earlier this year. I know I'm very lucky, and I wish everyone here has as much success with their various treatments

Hi leslie I'm so pleased to hear that life is being kinder to you and your surgery has made you more comfortable. You deserve to get out there and have a life. My issues are nothing compared to what most are experiencing, it's strange how haven't really felt ill before through this but now I'm a bit wiped out, it had to happen sometime.

overeggit I'm afraid I don't know about the cancer you have but there have certainly been posters with triple neg here and I gather a lot of work is being done in this field too. There are lots of people here with young children and the terror of how this affects them is the scariest thing of all. Mine are older and were in 6th firm and university but I still very much felt my job as a mum wasn't done.

At least they're getting started quickly. Take every offer of help, I think actually giving people specific jobs is a good idea otherwise you get vague offers and nothing actually gets done. I hope you gave good support at home.

Thanks all - tired after a sleepless night. Glad I've got the surgery on Monday, need to get sorted for that.

In terms of work, what's the best approach? I work full time, but for a very small non-profit. My job involves travel to some fairly low resource settings (think Nigeria, rural Tanzania, that sort of thing), which I presume is off the cards, and if I can't work I don't feel comfortable expecting to be paid full time. I feel it's going to be a tricky conversation so not sure how to frame it - any advice?

Glad to hear your tumours are stable Leslie, and thank you for all your support, it's great being able to 'cry' here.

I'm afraid I can't help with the work issues as I don't work myself and haven't had to cope with that. Others should be able to help there. I wouldn't think travelling is going to be an option for a while. The cancer charities might be a good starting point for job/financial advice. It sounds like your situation is not straightforward. But you do work so I assume you have some rights, it's not like you asked for this to happen.

People have definitely worked from home through treatment and even travelled to workplaces but you're going to need some recovery time from surgery and it depends what the chemo regime is? Chemo will depress your immune system so you need to keep yourself safe.

Overeggedit Hello. Wasn't about yesterday - apols - DH and DS both in hospital (different hospitals, to make it more interesting...)(long story, best not to ask...). Now firing up the research for you.

Leslie
So glad you're feeling better and that the tumours are stable! Long may this continue. You're one very brave person. (Forgive the word 'brave' here - but sometimes it is justified.)

So pleased to hear your tumours are still stable Leslie. That really is good news.

Sorry to hear about your DH and DS amber . I do hope it's nothing serious and they both make a quick recovery.

Love to all as always

Thank you all :) I feel a weird guilt, which I'm sure many of you understand. Logically I know my treatment working has no bearing on anyone else's treatment. But I know so many people who weren't as fortunate and I feel like I've stolen something from them I was raised Catholic so I expect it's just part of my ingrained guilt

Twitter I'm not brave at all, I promise. I'd give the cancer back if I could (assuming it wouldn't be given to someone else!) as it is I'm just very grateful that treatment is available and effective

Jg1 I hope your appointment went well

Bleurgh I have that nasty post chemo taste. It only goes away when I'm eating something strongly flavoured - jalapeños in brine are a current favourite! But comes back as soon as I stop eating yuck. I have a craving to just drink brine but I feel that would be a bad idea...

I'll stop whinging now! I hope everyone is having a good evening

Evening all. I've been following along lately but not much to report.

overeggedit I have very little ones too - an 8 month old and a 2 year old, which adds an extra level of concern to proceedings. Have brain surgery to remove a tumour booked in next week and just trying to organise childcare for them for the time I'll be in hospital is extra stress I could do without!
Been to see my general neurologist today as have had some worrying additional symptoms in my eyes and headaches that haven't been present until a month or so ago, but he can't see anything he's immediately concerned about which is reassuring. Really hoping I don't get cancelled again this time. I'm really ready to get this tumour out now!

Thank you so so much amber to take the time to find that out for me, especially with everything going on in your life. I hope your husband and son are ok and out of hospital soon. Your words are so reassuring and I feel like I can face the day now.

Thanks also everyone for your kind words, the advice and support here has been lovely, I am taking it all in. Looking forward to surgery on Monday and moving forward. Littlegreycat good luck for your surgery next week, hope you get the childcare ok too, I'll be thinking of you.

Also thinking of everyone else waiting for results , and for Leslie (that's not brine...) - hope the bad taste passes.

Hi everyone,
Overegged I'm so sorry about your crappy news. Will be thinking of you for your op on Monday. Brilliant that you can get started...once you know where you are and have a plan it does all seem so much easier. I've got small children (I mistakenly said one was 20 the other day.. .he isn't, they are seven and 10) and without a doubt that was the very worst part of my diagnosis.. .looking at them and feeling this huge panic that I could seriously upset them and I felt enormous amounts of guilt (Leslie.. .I'm Catholic too...well was raised as one.. .it's ingrained) ...i avoided telling them for ages as I was so worried about the impact...but honestly they were fine with it. Though i will say I was v v v lucky in that I didn't need chemo....but children are astonishingly resilient at most things life throws at them

Leslie...absolutely delighted you're stable, the brine scenario must be a bore...and i get the guilt...i always feel I got off too lightly by not needing chemo...odd really...

Littlegreycat...huge luck for your ok

Amber...so so sorry about your husband and son...hope they are able to come out of hospital soon

Waves to all...hope you have good weekends.. .xx
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