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

Bollocks buggering cancer..chewing I am so sorry. I'm also appalled by your hospital. Oh fuck......have a HUGE hug. And if there's anything I can do...cant think what..but if you can then please shout. So very sorry. Xxx

I've PM'd you chewing . I'm sure there must be many people who have had lots of chemo. Wondering if amber has been in touch with you?

Really glad that you are looking at options, like Freddie says, please shout if you think any of us can help at all.

I'm so sorry to intrude on this thread after chewing's news. I so hope that there are some further options for you.

I've just had an appointment with a consultant following a mammogram on Monday which raised some issues with my right breast. I have two areas of suspicious tissue; microcalcification and one area is striculated. I'm 44 and have been on HRT for 6 months following an early menopause.

I have no lumps and have had two breat exams in the past three months (including one on Monday!) and nothing. Anyway the consultant today examined me and found nothing and then looked at the mammogram. He became rather serious at this point and pretty much said that it looks very much like multicentric cancer. I am having another mammogram tomorrow, ultrasound and biopsies. I kind of knew after reading the report to be honest but I'm sort of floating above it all? I was told today that the treatment is likely to be a mastectomy as the areas are quite far apart and it means that the breast is possibly unsaveable and compromised.

Does anyone have any advice for me for tomorrow? I'm planning on seeing my GP first thing and I'm going to ask for some anti-anxiety meds (any idea what I should ask for?) just in case I suddenly freak out! My consultant is going on holiday tomorrow so I won't have the results until the Wednesday after next (although I'm resigned to it being cancer). He did offer to refer me to someone else but I have a connection to this consultant (family know him) and he is kind with a good bedside manner and a great reputation.

I'm very lucky to be having private healthcare through my work at the moment but the consultant said that if there are any problems at all he will take me over to his NHS list. Not sure why I'm saying this, I suppose because the health insurance feels like an additional thing I have to learn about very quickly.

I have two boys, 20 and 17 both living at home with me and my mum and I have told them what is happening. I'm very concerned at this point for them and for my mum.

chewing fingers crossed for your research. One of my chemo buddies must've had about forty cycles now, though he's got bowel cancer so not sure if that's at all relevant. He's on the same chemo as me so it's two weekly cycles. Lilymaid must've had quite a lot, but I'm not sure she went into that much detail. Are you on Facebook? There are various breast cancer groups on there

TonySopranosVest you're not intruding you're very welcome. Good luck tomorrow. My advice would be to try and take it one step at a time. A few on here have used health insurance so hopefully they can advise if you have any issues. My GP prescribed propranolol for anxiety, which is a beta blocker. My main symptom was a feeling of the blood pounding in my head and that it would explode. I couldn't process my thoughts properly as I couldn't hear myself think. The propranolol doesn't stop or change the thoughts, just the physical reaction, so if you're having intrusive thoughts then a different type of medication might be more suitable :)

Thank you so much Leslie (I love park & Recs)

It's so difficult to not let my thoughts run on and on! It doesn't feel real at this point. Thank you for replying I really appreciate it. I'll see what the GP suggests, my surgery aren't keen on giving out prescriptions so I'm hoping I won't have to fight too hard!

Chewing like everyone else I'm so sorry to hear your latest news, I'm shocked at the treatment you've had all the way through. I hope you manage to get some help elsewhere and you have good support at home.

Oh Chewing Im so sorry to hear that , hope that they can offer you a trial.

Hope everyone else is as well as can be

Tony - I can relate to your post as your initial consultation sounds somewhat similar to mine.
In March I was called in for 'further screening' after a routine mammogram. When I arrived the consultant showed me what they were concerned about and said that they were expecting to find multi focal high grade DCIS due to the 'star shape' of the clusters. I then had a biopsy and a week later high grade DCIS was confirmed. As I have ample breasts and as the clusters were close together, I had a WLE (lumpectomy) but this was conducted as a mammoplasty operation (like a breast reduction and lift). Even though the clusters were high up towards my breast bone, they made the same incisions that they would make when doing a breast reduction (from underneath). It was only day surgery and it really wasn't too bad. I was left with 1 pert boob and the plan was to have the other reduced and lifted at a later date.
However, the pathology results on the removed breast tissue (they removed 280 grams) revealed more DCIS than had been detected on the mammogram.
Three weeks ago I had a mastectomy with immediate reconstruction. Again, this has proved to be far easier than I had thought and I can honestly say that everything has been far more manageable than I imagined. Although, to be honest, I hadn't ever imagined getting breast cancer or having a mastectomy but if I had I am sure I would have anticipated it all being far worse than it has been.
I am still awaiting some results from the lymph node biopsies and there is still a question mark about having radiotherapy but again, I feel OK about getting the results and following treatment.
A bit of a long post - but in short, once I was told what I have and the treatment plans, everything else was very manageable.
I felt compelled to post this as I am really concerned about the current zeitgeist of mistrusting medics (fuelled by the Charlie Gard case). I think my 'journey' would have been really difficult if I had had doubts about the medics capacity to effectively diagnose and treat or act in my best interests. I am a self confessed control freak and tend to research/ over research everything. Whilst I read the Macmillan and Breast Cancer UK information to ensure was informed, beyond that I have pretty much handed my body and decision making to the medics as they really do know best. For me, this has been very freeing and has most certainly made the experience far less stressful. I hope that 'letting go' a bit is a life lesson I will take from this whole experience.

Chewing so sorry to hear your news. This cancer stuff is just shit. Carry on being a royal PITA as much as you can.

Hello- I hope nobody minds me joining to ask a question. I posted a few years ago when my mum was first diagnosed with breast cancer and the prognosis was uncertain and found lurking here an incredibly helpful and safe space in a time of terrifying google searches. I'm so sorry to hear of recent bad news.

My mum was declared cancer-free in April of last year following surgery and radiotherapy, she saw her specialist in June for an annual check-up and all was well. She is still on letrozole. Since her treatment ended, she had a minor, unrelated stroke which she has recovered from. She was also diagnosed with non-alcoholic fatty liver about five years ago, which was being monitored but for which she's had no specific treatment. She's has a very tough few years health-wise.

She has, in about the past two months, put on a very noticeable amount of weight on her stomach. She is attributing this to eating badly and not exercising and says it has actually crept on over a longer time frame. IMO, something about it looks wrong- she's been this heavy before but never carried so much weight on her stomach as opposed to the rest of her body: it looks like she's pregnant rather than getting heavier. She did however have a hysterectomy many years ago which I believe rules out ovarian cancer. I really don't want to stress her out if I'm worrying unduly: I know hormones can affect where we put on weight so was wondering if anyone had experienced this while on letrozole? Is there something about the medication that might make weight go to her stomach? If not, I'm not even sure what my concerns are, or what I would suggest she say to the GP. I just feel concerned something isn't right. Her doctor initially dismissed her concerns about pain in her breast a few weeks before her initial diagnosis and her cancer was diagnosed almost accidentally so I am very worried about missing something this time. Sorry for the essay, if anyone has any thoughts they'd be much appreciated x

@watercannot

Thank you for your thoughtful post . I know I'm meant to take each step at a time but, like you, I am bit of a control freak and I need to be as informed as possible and this desire for control means that I'm bracing myself for the reality which I'm sure I will soon be facing.

My biopsies today came as a shock TBH. I had two incisions and five core biopsies taken. This has knocked me for six and I'm worrying a bit that if I find this painful then I'm going to be a puddle when it gets serious.

My GP has been a marvel today, chucking diazepam at me (LOVE HIM SO MUCH) and offers of immediate sick notes for time off/reduced hours/alternative working patterns. What a star. He was v kind while I had a quick sob too as I'm in auto pilot at home for everyone.

Im so grateful for this thread.

Oh and I want to wish you all the best for your further results watercannot

Tony you will find much support on here - I know I have. You will cope - because you have too, and also because the medics - as Water says - really do know what they're doing.

I've had a roller-coaster ride since my own recent diagnosis in mid-March and have learned many things.. especially how hard it is to be the one in control, the (single) mum managing everything and reassuring everyone else all the time. I've learned I'm not superhuman after all and I do need support and reassurance and for someone else to take on the mum role sometimes.

Don't hesitate to ask for help from all quarters. Here's my hand for starters.

Good morning lacies.it's been quite a while since I last posted. We are moving, so caught up in that business.
chewing I don't know what to say really except damn cancer. I am so sorry you have had to endure so much, but it ain't over and you are doing the right thing by pursuing the options and pressing forward with the hospital and nurse. If there is something fir yoy, uou bloddy well deserve to have it. My thoughts are with you and I hope you're surrounded with positive and supporting family and friends.
I'm going to try and catch up with all the rest of you lovely lot, so please accept my apologies for not mentioning everyone.
Bless you all.

@WorriedDaughter79 Hi, I've been on letrozole for 6 months now and the weight gain has been the most mystifying bit of it. I have literally put on maybe 3/4 of a stone, regardless of doing more exercise since I recovered from active treatment and regardless of what I eat. All of this is on my stomach, bum and thighs..
Other key side effect is my joints stiffening, so my knees are in a rough way, I have to think about how to get up if I crouch down (I'm 48 not 98!)
But I wouldn't say I look distended or out of proportion? So can you encourage your mum to get a check up - the breast cancer team should be able to help - are you able to speak to her Breast Care Nurse? They may not be able to speak specifically about your mum but generally can tell if you are describing what is normal and what isn't. Also the MacMillan help line may be able to give you more advice.
I hope that helps.

WorriedDaughter were her ovaries definitely removed in the hysterectomy? There are a few types of hysterectomy, and the most common one doesn't include ovaries. I'm not on letrozole but I agree with pepper that your mum ought to get checked out. Does she have a breast cancer nurse? They might be a better port of call than GP, as they'll have more experience of letrozole side effects. I'm sorry she has had such a rough few years. I hope this is "just" an annoying side effect

royal good luck with the move!

Tony I'm glad your GP was good but sorry the biopsies were painful. I hope you are recovering well

watercannot I'm glad you had a medical team that you trusted. I think in general most of us here have also had good experiences, which makes it all the more shocking when people are let down as badly as chewing has been. I hope you are recovering well from your surgery, and fingers crossed for your biopsy results - do you know when you will find out?

Waving to everyone!

I've been poorly on and off the last few days. Excruciating stomach cramps. I think it's adhesions or something. It feels like period pains but I'm pretty sure my reproductive system has given up the ghost I saw the OOH GP at the weekend as I had all the symptoms of a bowel obstruction, but thankfully it's not

Good morning.
Leslie thanks. Luckily I'm a minimalist!
I'm sorry you've had to deal with those painful cramps. Has your doctor prescribed anything to help with the pain? Could it just be a SE of sorts?
Wishing everyone as good a day as can be.

Thanks @pepperrabbit - I've tried to convince her to see the GP, she's a bit wary and saying she'll exercise more and eat less bread and junk first to see if it makes a difference. But it really doesn't look like normal weight gain to me. She went private in the end with her treatment so no longer has a breast cancer nurse, but could contact her consultant if needs be.

@WhatWouldLeslieKnopeDo I am pretty sure her ovaries were removed. Ovarian cancer was my first concern.

After a bit of time with Dr google (I know!) I'm now wondering if it might actually be to do with her liver condition. I imagine all the extra meds could be putting pressure on her liver, and worryingly a distended stomach can be a sign of liver failure.

Thank you for your advice, I think I'm going to push a bit harder for her to go back to the GP in the first instance. She's due a check up and to have her bloods redone in a few weeks but I think if possible I'm going to convince her to move that forward. I think it definitely sounds like it's worth checking out.

Hey Leslie how are you feeling today? I hope those cramps have eased up a bit?

RBH rang today - I'm back on the chemo on 9th August, all being well. I need another CT scan 1st - not my favourite occupation! 2 days before my birthday but I'm keen to get things on track after the hysterectomy.

royal yes I've got a good supply of painkillers. I hope the packing is going well :)

Worried I hope it turns out to be nothing to worry about, but fingers crossed she can move the check up forward a bit

Twitter I'm alright thanks. The cramps are easing. And I've been approved for chemo tomorrow. Phew! :) fingers crossed for 9th. And the CT scan.

chewing how are things?

I hope everyone is having a reasonable week

Glad to hear your cramps are easing off Leslie and all the best for your chemo tomorrow.

Twitter Thank you for your lovely post - and hoping that your CT scan goes well.

I'm limping through this week. Went to the theatre on Monday with my two sons and met Robert Webb! Huge fan so that was great. Work are being brilliant but I'm definitely happier working from home. Seems strange as thought I would be better distracted in the office but instead I keep losing track of my thoughts and getting all discombobulated.

Having an allergic reaction to the bloody plasters used on my incisions, can you believe it?! Never had a reaction to plasters before so that's a thing now. This time next week I'll have my results. Strange thought.

Love to all.

Tony I sometimes react to tape/plasters, sometimes not. The exact same type, brand etc. I think it's some sort of stress type thing as it's usually after surgery or chemo, so I guess my body is already irritated. Perhaps it's the same for you? Hopefully it won't be an ongoing issue!

I'm glad your work are being flexible. And how exciting to meet Robert Webb! Good luck with your results

Hi everyone.. .school hols so all a bit hectic but just wanted to pop on to say I'm thinking of everyone.
Good luck with chemo tomorrow Leslie..
And Chewing...if you're reading I hope you are doing ok...thinking of you so much. No pressure at all to post...xxxxxx

leslie I hope chemo today went ok and you were still well enough this morning.
tony I developed an allergy to dressings as well post surgery, made my picc line very challenging, the hospital spent a lot of time working out what they could and couldn't use, and I had a full pack which I took to appts to make sure that was all that was used. They let me put aveeno on it and nothing else! The scars have faded now though.
I had a check up with my breast surgeon today, was surprisingly nervous, but all was well, thank goodness.
He admired my blue tint, didn't recommend any kind of evening up surgery. Face on they look really similar, but if I lean forwards one is half the size! He said I'd had a big cancer, but was pretty pleased with his work.
Also, at the age of 48, what I thought was an odd mole all my life, right under my breast, is some kind of vestigial third nipple!!!! I am Scaramanga.

Just checking in to say hi and hope everyone's ok. I'm just back at work from maternity leave so no time for anything at the moment, but finally have a date (again) for my surgery of 10th August. Fingers crossed I don't get cancelled again!