Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

well indeed Top, I’m the questioning sort … I was being quite tongue in cheek, but you do have an excellent knowledge, being an ex-GP!

anyway v good point about the strike prospect. Would be another nail in the Tory coffin

@Bloodybridget Hi P, the love Bridget had for you and your family shone through her posts. She will be much missed.

@Bloodybridget P, I really can't stress enough how brilliant Bridget was on the thread. I hope she in turn derived some support from it. Take care of yourself at this truly hellish time.

@Bloodybridget Hi P, Bridget was so kind and welcoming to me when I first joined this thread, and was so generous and supportive to all here, she will be greatly missed. Sending you and your family my love and sympathy.

Im in shock. The haemotologist called i dont have lymphoma but mets in my groin lymph nodes. Scan next week to find the primary. I feel so fucking well. I dont know what ive done to deserve this. Oh god i cant see away out of this.

@EachandEveryone saw your other thread and was just about to say to come over here. It's really early days and the shock/fear are overwhelming. I'm 6 weeks down the line from my breast cancer diagnosis and once the initial shock passes it does get a bit easier to process but it's never going to be a walk in the park.

As for me, I got the dressing removed yesterday by the surgeon and I've got a seroma and also cording. They are going to watch and wait with the seroma unless it gets bigger then it will need draining and I've got a physio appointment for the cording next week. Bit confused about what to do in the meantime as the seroma needs me to rest but the cording needs exercises to help it....

@EachandEveryone It’s totally natural to be in shock right now. It’s a horrendous thing to hear. What kind of scan are you having? A CT? Be extremely kind to yourself this weekend. Cry, scream, drink if you need to. Go with your feelings whatever they are in that moment. I also was totally well and it was a horrible shock, I’ve felt well all throughout the process apart from the week after chemo, it’s unbelievable isn’t it that your body is silently killing you and you have no idea

You will feel more informed once you know where your primary is and have a treatment plan. You’ve got this.

@EachandEveryone My diagnosis came completely out of the blue from screening, it's hard to get your head around, right up to going in for surgery I was still on some level waiting for them to tell me they'd got it wrong or I'd misheard.

@EachandEveryone don't panic! The first rule is STAY OFF GOOGLE or you will be planning your funeral and in despair. Keep busy, or rant and cry and scream, if that is what you feel like doing. There is no right or wrong way to be at this point. It will all feel more manageable once you have a diagnosis and a plan.

@fudgecat the seroma will need draining if it gets really painful. I had mine drained four times last time round. I don't think exercise would make much difference if it's just some arms raises and stretches. Don't do what I did and try to ride a bike or go for long walks as that doesn't help. Short ones are fine!
The cording is the weirdest thing and you might be able to pop it with stretches but if not then the physio will help. Whatever you do it will eventually settle down.

I'm taking my wig to another fancy dress party tonight. It's a very sociable wig! I am enjoying a nice few days before round 6 and the descent into the depths...

Sending good vibes to everybody xx
Top

please can I come and join your thread?. I am having a double mastectomy next week

@2greenroses I bet you're wishing it was this time next week! There are some wonderful supportive people on this thread, with lots of different experiences. I was recently diagnosed with breast cancer after a mammogram, and am waiting for radiotherapy after my lumpectomy. It's a weird, scary time, but I hope someone will be along soon to give you some insight into their mastectomy. In the meantime, spoil yourself however you see fit - I'm about to pour a glass of wine and eat chocolate while watching Strictly. Fingers crossed all goes well for you.

Thank you - I'm scoffing chocolate too! I'm about to lose weight anyway, so who cares right now!

@2greenroses welcome to the thread no-one wants to join. I have OC but there are lots of us here with BC who can help you with questions. I'm really hoping your surgery comes round quickly, I found waiting for mine really hard.

Thank you

@2greenroses hey welcome to the group, so sorry that you have ended up here, I was diagnosed 7 weeks ago tomorrow and had a mastectomy two weeks ago so feel free to ask any questions x

Welcome @2greenroses to the thread nobody wants to join.
Have you had a genetic test? I have had cancer in both breasts but just had lumpectomy as I have no known genetic flaw.

Did the nurses give you advice on what to take in to hospital? How long will you stay in? I hope you aren't feeling too anxious.

Top

I have a faulty BRCA2 gene. So I’ve been a dud since birth. I just didn’t know it.

I do t have much Information yet. I don’t really know what’s going to happen or what to expect.

if anyone has had a double mastectomy, I’d like to hear a bit about it. How long will I be in hospital roughly? How much help will I need when I come home?

thanks for your welcome, and for any information

Hi @2greenroses , sorry to meet you here but welcome!
I've also got faulty genetics (only just discovered), not BRAC2 but similar. I had BC diagnosed last year, 6 months of chemo and then a double mastectomy with implant reconstruction. I also chose to remove my nipples as doing so meant the risk of it returning reduced by another 1 or 2 %. I have young children and said I'll take very 1% I can!!

The operation went really well and I was in hospital for 1 night. I bought a very long u shaped pillow which was amazing as I had to sleep on my back for a couple of weeks and the pillow wrapped around me for support. I was driving within a week and although I took things gently I really did feel ok.

Feel free to ask questions here or dm me if you'd prefer.

Best of luck xx

Thank you @PurpleBananas22 I have pmed you. Was the genetic test a shock? How has it affected the rest of your family?

Honestly yes it was a shock. There is no history of breast cancer in my family and I was only tested as my hospital happened to be doing a trial on genetic testing.

My genetic result means I had an 80% chance of developing BC in my lifetime. Since I had that confirmed, my parents and siblings have been tested (their choice) to find out who carries the gene. Once we figured out which parent I inherited it from we contacted their siblings and cousins who have all been given the choice to get tested. My oncologist strongly encouraged me to inform all my relatives who might be affected ASAP so that they can make their own informed choice whether or not they want to get tested. Some of them have chosen to, others not.

Discovering the genetic link also helped my doctors decide the best course of treatment as they could predict how it would respond to certain medications (how amazing is that!). Plus my surgery options were influenced by my genetic link - I had a double mastectomy, whereas had I not known about the genetic risk I probably would only have been offered a single.

I'm Extremely grateful for modern medicine and being looked after so well!

Oh and my children... as there is no evidence of risk of cancer until adulthood, they can't be tested until they are old enough to decide for themselves. I wish I could find out now if they are carriers, but the doctors tell me it would be unethical as there is no clinical need to find out now. They have a choice to make where they are older. I find that hard to get my head round as they are currently very young and I make all their choices!

That's really tough @PurpleBananas22 - I'm waiting for the final results from genetic testing though the consultant thinks he saw them and thinks they're negative (BRCA) and the worst thing I felt was the potential impact on my daughter rather than me, though when I read all about it it did reassure me that the risk if she had the mutation wasn't until she was older and she'd be okay with her ovaries until after she had kids (Ihad OC). It's a crappy situation, but as you say there is a lot that can be done to minimise the risk once you know about it, I definitely felt more hopeful after reading about it. Good luck as well @2greenroses

I am all the wrong demographics for a genetic cancer apart from having BC twice. I am too old, no family history and don’t qualify on the NHS. I was able to get a BRCA gene test on my tumour but not the other genes. For my DDs and DSis I would like to get a full test done but I will have to pay. Has anybody else found a private genetic test?

I am gearing up for dose 6 tomorrow. I have decided I don’t need to be brave, all I have to do is turn up for treatment. I’m actually feeling quite squashed and scared of the joint pain. My lovely oncologist has suggested some pregabalin to reduce the pain so I shall try that. It’s all grinding me down as I get more tired and defeated as I go through. One positive is that she is arranging another mammogram and a surgical appointment to plan my operation which means I am nearly at the end of chemotherapy.

This post is all I, I, I, but I hope you are all doing okay.

@EachandEveryone when is your scan? @2greenroses when is your operation? @fudgecat which day is your physio? @ajandjjmum do you know when you will start radiotherapy? How many sessions will you have to go for?
We really need Bridget with her spreadsheet to keep tabs on everybody the way she did so well. She was a wonderful support even while going through treatment herself.
Sending as much positivity as I can muster to all
Top

@Top I hope the pregabalin helps. I remember about this time last year Lying on the bed crying because my joints felt like they were on fire thanks to Kadcyla and/or Anastrazole 🙁Just one of the many lowlights that stands out to me. ..

I've booked a Look Good, Feel Good workshop as I've been tempted by the lure of free goodies! They weren't on due to Covid when I could really have done with it & I feel a bit iffy about the assumption that anyone should or wants to look a certain way. But I need excuses to start moving around & get active again after enforced rest post recon surgery. If anyone hasn't heard of these workshops, search them up as they do more than one type & can be done online too.