Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

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 is here

Current members, please do introduce yourselves

Thanks everyone for all the comments and tips about the cold cap. It's odd that I have allowed myself to fixate on that as the root of all evil. Distraction perhaps. I'm not vain, I often forget to brush my hair, I never wear makeup and I don't do that glancing in a mirror as I pass thing that some people do. So I guess I felt that the purpose of trying to keep my hair was to make other people feel better. I've spoken to both DSs and DH and they absolutely don't want me to do anything that isn't compulsory unless I really want to. I need to be able to not feel self conscious in my own home and DS has been very reassuring. So I'm not going to even try.

@YoureAQuizardHarry you poor love. The wait for results is just awful, feel free to come on here and rant. By the way your user name is one of our family quiz names. DH, me and the boys often do pub quizzes and we've won a few as YoureAQuizardHarry.

@Brassica hope you get the lumpectomy soon. It seems strange that I have had things the opposite way round to you, lumpectomy first then chemo. Will you have radiotherapy afterwards?

@Bloodybridget. Those difficult questions for the consultant. I don't blame you for hesitating. What does your DP think?

Thank you to all. For the first time today for ages....I feel well!!! It's such a rarity now I'm wondering if I'm going to pay for it tomorrow. I was able to come home from work and go for a walk!

Regarding the cold cap, I know two ladies that have done it and kept most of their hair but I have heard it is not the nicest of things. I think so much of this is personal to you and we all react so differently to treatments. My reaction to radiotherapy was different to other people's, for example.

Sending hugs and good vibes to all.

That's a good decision for you then skap and I'm guessing you feel a whole lot better for having made it!

Hello everyone, I had a separate thread, but have now found this one and would really like to join. Got my biopsy results today - not great news, but not all bad. I have got breast cancer, but the treatment should cure me completely, so that's fantastic. Treatment sounds gruelling - will start 18 weeks of chemotherapy, prob starting beginning of November, then operation after, then radiotherapy. Should be cured after 9 months, which is great news! Still in shock at the moment, but am absolutely terrified! Somebody talk me down a bit! I have a 6 year old and have no idea how or what to tell him...

Zorgothslugofdoom sorry to hear that news. If you've read the thread you'll know that there are many people going through cancer treatment and several of us have breast cancer. You have a diagnosis and a plan, those weeks of not knowing are agony. This thread is a place to let off steam, learn how we each cope with different treatments and we all try to support each other.
Treatments are not always the same, some have surgery first, some have different kinds of chemotherapy. Do you have family nearby to help? There is some helpful stuff about telling young children on one of the breast cancer websites. Can't find it on phone. I wouldn't rush to tell him, let yourself get to grips with it first.

@Zorgothslugofdoom I'm sorry you find yourself here. I had my breast cancer diagnosis back in Feb and I was absolutely terrified. The waiting for treatment to start is the worst part, or it was for me. When you're 'in' the process, it's not quite so scary. Don't get me wrong, it's not the most fun I've ever had but life went on and you'll get through it. My last chemo was at the end of July and it's already starting to feel like a distant memory.

I had good news today. Had a results appointment after my bilateral mastectomy and I no longer have cancer. So now, for me, although everything was very much arse about tit (excuse the pun), I'm starting to see the finish line now. I wish you all the very best with your treatment, you really will get there.

@skap haha! I love quizzes! DH was a bit at it but we won so now that's ours forever!!!

Does anyone else on here have bowel cancer? I had bloods done yesterday at the GP with the idea that I'll be having an appointment on Tuesday for the results but she rang last night and said today I need a blood transfusion as my bloods are so low. So I'm going to the hospital I work at for a blood transfusion

Can anyone tell me their symptoms?

Hi Zorgothslug welcome to the thread, it's bloody scary when you're told you have cancer, it's great you have a plan in place and can see an end to it.

I got diagnosed in July, had a lumpectomy and lymph node removal, they were clear, no chemo but put on anastrazole for five years and calcium tablets, started radiotherapy this week and should be finished that in november.

You'll get lots support and great listening ear here.

That's great news BenWill delighted for you

Skap good that you've made a decision, it's not easy to make decisions when we are bombarded with information, I think we all find the one thing to focus on, mine was waiting for radiotherapy date, I couldn't think of much else.

Hi Zorgoth, sorry to hear about your diagnosis. The treatment plan you’re having is similar to mine in terms of the order of things. Feel free to ask any questions on here if you’re wondering or worrying about what to expect. Do you know yet whether you have a type that will require hormone treatment as well? As for telling your son, we have 8 year old twins and read the Macmillan advice on how to tell them, which was excellent. www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/talking-to-children
We found that they understood and accepted it well and didn’t appear to be particularly fazed. They have asked questions from time to time of course but it helped that they had a reference point from real life (a teacher) who they had already seen go through treatment and get better. Maybe you have something similar you can point to for your son?

Ben that is excellent news! Well done. I take it they weren’t in a position to discuss the ovary removal and when that might happen though?

Quizard we don’t have many bowel cancer cases on here. There was @likeazebra on an earlier thread and @whythoughh who just recently got diagnosed. Maybe one of them can comment.

I got my date for surgery - 31/10. That’s Halloween and Brexit Day. Good omens?

In answer to Skap, yes I’ll be having rads as well towards the end of the year. I had chemo first rather than surgery I think because it was large-ish and they wanted to shrink it first before attempting to remove it. I’m glad you’ve made a decision on the cold cap and if it feels right for you then it’s the right one isn’t it. In all this there really is no virtue in doing anything for the sake of another person or ‘what will the neighbours say’ - it’s you going through the mill, you get to choose!

How are your stye and cough today Bridget, any better?

Glad you are feeling brighter flying. I’m sure the walk did you good.

How did your appointment go yesterday Born? Did you navigate the parking situation etc ok?

Hi Skap I hope you feel better now you have made your decision. Funny, I wished afterwards that I hadn't even started cold capping but I think for me treatment started so fast I hadn't got my head around losing my hair whereas after a couple of treatments my mindset had changed.

Great news Ben - I'm glad things have worked out well for you.

Zorgo our treatment regime sounds similar so I thought it might help to hear from someone who is just out the other end, I was diagnosed on 15 March and Chemo started 25th. Don't stress if your delay is greater, I have Inflammatory BC which is rare and particularly aggressive so there are strict protocols around timing. I had fortnightly Chemo until 2 July, a DMX on 1 August then five weeks of daily radiotherapy which finished last Friday. As someone has already said it's not exactly fun and games but you do get through it. People keep telling me how positive I am but the bottom line is that wailing woe is me doesn't really help and my (older) kids don't need me falling apart in front of them. That doesn't mean there aren't low days and I'm a bit weepy this week as my skin is so sore and I'm not sleeping well but I know from next week it will get better. This thread is great for support so stick around.

Hi Skap I hope you feel better now you have made your decision. Funny, I wished afterwards that I hadn't even started cold capping but I think for me treatment started so fast I hadn't got my head around losing my hair whereas after a couple of treatments my mindset had changed.

Great news Ben - I'm glad things have worked out well for you.

Zorgo our treatment regime sounds similar so I thought it might help to hear from someone who is just out the other end, I was diagnosed on 15 March and Chemo started 25th. Don't stress if your delay is greater, I have Inflammatory BC which is rare and particularly aggressive so there are strict protocols around timing. I had fortnightly Chemo until 2 July, a DMX on 1 August then five weeks of daily radiotherapy which finished last Friday. As someone has already said it's not exactly fun and games but you do get through it. People keep telling me how positive I am but the bottom line is that wailing woe is me doesn't really help and my (older) kids don't need me falling apart in front of them. That doesn't mean there aren't low days and I'm a bit weepy this week as my skin is so sore and I'm not sleeping well but I know from next week it will get better. This thread is great for support so stick around.

Sorry for the double post, don't know what happened.

Brassica I think Halloween surgery is quite apt ( but I do have a bit of a sick sense of humour 😁). And if Cancer is the biggest joke there is then Brexit day is definitely apt. My surgery was on my eldest's birthday, it was hard to find anything funny about that.

Brassica that's a brilliant day to have your surgery! I had my first mx around Halloween and I remember me and my room mate having a little walk down the ward each with our wound drain in the little shoulder bag they give you .. ..we were like something out of a zombie movie

zorgo sorry to see you here but hope you find the thread helpful. Do you know what chemo regime you'll be on?

I had my oncology appt yesterday and got the lowdown on radiotheraoy which will be the next step for me after my FINAL CHEMO on Monday. He said I'd be having 15 sessions plus 5 boosters, so 4 weeks, to ensure the whole breast was covered until I reminded him that I don't actually have a breast, just an implant ......so yeah, it's just the 3 weeks. To be fair, he wasn't my usual doctor.
So fingers crossed for good bloods tomorrow so that my chemo can go ahead on Monday.
Did I mention that it'll be my final one?

All digits crossed for that WTF!! How are you feeling? Good job you were on the ball at your appointment or you’d be having more rads than you need!

@Brassica thank you for the tag.

I am a bit hit and miss on Mumsnet at the moment so haven't been on this thread for a while.

I was diagnosed in 2016 with a Neuroendocrine tumour in my small bowel.

Neuroendocrine cancer is a type of cancer that can appear anywhere there are Neuroendocrine cells (nerve or hormone cells) in the body. The most common places are bowel, lung and pancreas.

Once spread to the lymph nodes which mine had then it is unlikely to be cured and I will need active surveillance for the rest of my life.

At my last appointment they told me it is microscopic metastatic so it's watch and wait where it appears then remove if they can.

My symptoms were diarrhoea up to 17 times a day, a very bloated stomach, painful facial flushing without sweat, night sweats and weight gain (3 stone very quickly) all my blood tests were normal and I was only diagnosed after insisting on a colonoscopy as I was convinced I had crohns.

@YoureAQuizardHarry I'm sorry I can't help with bowel cancer however I would say if your tests are clear for that then do ask the question whether it could be Neuroendocrine cancer as it is quite rare and even more so in young people. I was told I was literally one in a million.

Good luck with all your tests and I hope they come back clear

Hi, can I join? I'm 49, got diagnosed with anal cancer in June of this year. It had spread to the lymph nodes in the groin. I had to have surgery to form a colostomy and have just completed 6 weeks of daily radiotherapy plus chemo via a pump. I don't know yet whether the treatment has worked. I have been struggling with side effects from radiotherapy, including bladder problems (have had to have catheter) and blistered private parts. I'm feeling a bit low about everything that has happened to me.

What was that, WTF, your final chemo, did you say? As in, the last one? - crossing everything your bloods are fine.
Zorgoth welcome, commiserations, support here every step of the way.
Ellen sorry you have the painful armpit.
Brassica glad you lasted through your work teambuilding day, and that you have a date for lumpectomy. I feel there should be a joke available here - Lumpexit?
Skap glad to hear you have made a decision re cold capping!
YoureaQuizard the transfusion should make you feel much better, yes?
Ben congratulations on great results! Very pleased for you.

So, DP and I set of for hospital in very good time yesterday, halfway there on second bus when I realised I didn't have the shopping bag containing my oncology appointment letter (bearing my address, DOB, hospital number etc.), hospital appointment card and blood test labels, plus book and umbrella. Didn't know if I'd left it at home or on first bus. Both leapt off bus, DP got Tube to first bus destination, I went back home and found the bag . . both reached hospital with time to spare, I got blood tests done v quickly, BP fine but heart rate rather high!
I saw a registrar this time whom I hadn't met before and I did ask her. Follow up, because I didn't have CA 125 markers at diagnosis, am unlikely to produce in future, so will have CT scans, first 4 weeks after last chemo, with results appointment 2 weeks later. Then scans every 3 months, extending to longer if clear, as time goes on.
Recurrence: if it happens once, it will almost certainly go on happening. Will be treated with chemo, and I could have several cycles with maybe 9 months clear between them. After a second cycle I might be offered PARP inhibitors, as these do also have benefits for women who don't have BRCA gene mutation.
Good to know, I'm glad I asked.
My stye is definitely on the way out but a cold is in full swing. Doesn't seem to be a no-no for chemo, although I hope if it does go ahead tomorrow they can find somewhere to put me away from other patients.
Good wishes to all!

Brassica/Bridget thanks guys. I'm setting myself up for a fall aren't I, but yes my last one! I'm looking forward to:

• Being able to taste and enjoy my food again
• Doing a normal poo
• Getting my hair back

Feeling a lot better than I was this time last week thanks brassica, though a bit snuffly so hoping that doesn't throw a spanner in the works. I'm willing it to go away before my blood test tomorrow! I've treated myself to some pampering today.... a facial which was bliss and vixen red fingers and toes bridget I'm glad you got some answers on the monitoring. It sounds thorough. Fingers crossed for treatment tomorrow. porolli I'm not surprised you're feeling low. That sounds a lot to deal with. I hope you find some support on the thread and that you have some good real life support around you.

I'm gonna have a little rest now to allow the facial to sink in and melt my wrinkles away (ha!) and then off to take my son to work as his car is in for repair. Nice to be back to the normality of mum duty, albeit briefly.

@porolli I’m sorry you’re here, that sounds incredibly tough. Everyone is really supportive, and this is a good place to let off steam because so many have been through similar and know how tough the regimes and recovery can be.

I’ve got an infection in my underarm. It just won’t heal, still weepy as ever 4 weeks later. On antibiotics to bring it down and hoping they kick in ASAP because it’s frigging sore.
Radiation starts 29th October on the provisio everything is healed up. 15 sessions over 3 weeks, so hoping to be done by Xmas.

Will now catch up with everyone. Hope it’s been a good day.

Thanks everyone for your kind and supportive messages. I have had a phone call with a date for my first MRI on 18th Oct; am guessing my oncologist appointment will be the week after, then chemo after that. I'll be having herceptin and perjeta(pertuzumab), 6 rounds over 18 weeks. Have to have another clip inserted into larger lump at some point; have also been asked if I want to participate in a trial - it's called the tip trial and if not on placebo, you have 2 weeks of a blood clotting medication (rivaroxaban) before chemo. Has anyone on here heard of it or even participated? I'm in Manchester, and will be going to Christie's for treatment. Has anyone any experience of being treated there? Sorry to bombard the board with questions, but I'm still in panic mode at the moment!

Just remembered, someone asked about what type of tumour - it's hormone receptor negative, but herceptin positive, so they think it should respond very well to herceptin treatment. Again, sorry for the essay...

@Bloodybridget. That sounds like a very constructive response from the doctor and you will be well monitored after treatment. I hope the cold doesn't get any worse. I've had a very mild cold but it's set my asthma off.

@WTF99 are you by any chance having your last dose on Monday? 😁😁

@Zorgothslugofdoom riveroxaban is a very common anti coagulant. DH takes it for AF. So in itself it's harmless, I assume they are hoping there will be a beneficial effect on the chemotherapy.

@SnowsInWater have you been given anything for the sore skin? I think your older kids would be perfectly fine with you leaning on them just now, not least if you've been putting on a brave face.

My wig shopping was a great success. Went to an internet supplier who is based near here (well an hour away). They were absolutely lovely, had a room ready with several wigs to try and I was spoilt for choice.

@Zorgothslugofdoom I just put my notice in at work because I got a job in another hospital it I currently work in the Christie in theatres. The surgeons are all absolutely amazing and the hospital is brilliant. Especially plastics though and If I had to have breast surgery I would want it there. Feel free to message if you like.

I had my blood transfusion today and had a lot of pain whilst I was in hospital so I went to A&E afterwards at the MRI and very long story short I need surgery to remove my bowel as I have a mass in there. I feel so unbelievably shocked

I've asked to be treated at the Christie as well as I know that the gastro surgeons are the best.

Goodness Quizard, I guess that confirms everything you were suspecting - but what a shock it must be. I hope you had someone with you to help you get home? Have they indicated how quickly the operation might happen? and for you tonight x

Welcome back porolli, I remember you from the last thread when you posted a couple of times and wondered where you went. Well done for getting through your treatment. I’m sure that wasn’t easy or pleasant (understatement). When do you expect to get a follow up test or scan to check the response? Do you have much support IRL while you go through this? I recall you saying before that you found talking about your particular type of cancer quite difficult, which must be isolating. Have you considered asking for some counselling at the hospital or via Macmillan- it sounds as if this could be helpful for you to come to terms with what you’ve had to go through.