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

Assorted family members out of their hospital experiences, thank you. More testing to go, but it's a long story and not relevant to here. And apologies - that should have been DSis I think not DS. Shows how long it's been since I've done MN

Evening all.

Where to start?

Leslie Step away from drinking the brine. You do not want to turn into a salty sea dog (unless that's Johnny Depp and if that's the case, then PM me yeah?)

Overegged Good luck for Monday. Have you planned anything for this weekend? I've been banging out the meditations on the Headspace App and they are helping me relax into this shithole. It's worth a bash?

Amber Thank you for all of your reassuring info and all the best vibes for your family's better health.

LittleGreyCat Best of luck for next week. I hope you manage to lean on some good people to help with the children.

Twitterqueen I just love you. The End.

I got my lymph node biopsy results yesterday and they are trumpets clear. The relief. We're still waiting on the HER2 results as these have come back as inconclusive (not the word used but the basic premise), so they've now gone off for further testing. I'm taking this as a probable "bad" result but it's OK. I was due to have an MRI on the other breast last Thursday but was struck down with vomiting and diarrhoea an hour before. This was definitely an anxiety attack as the moment I spoke to my BCN all symptoms vanished! Managed to go and have the lymph node biopsy on Saturday and was greatly amused by my blue wee and green, Star Trek skin. Re-booked MRI for this Monday and have been prescribed with Citalopram so hoping that I will be able to have all of the rest of the inevitable tests and surgeries. I'm looking at a mastectomy and immediate reconstruction as it's unlikely I will need radiotherapy. Does anyone have any words of wisdom/advice about this operation?

for all.

Tony- I had a mastectomy and immediate reconstruction 5 weeks ago. It has all gone very smoothly and I am really pleased with the result.
I went in on the morning of the op and spent 4 nights in hospital before coming home.
I deliberated long and hard about whether to have the reconstruction as it seemed like a really big operation compared to just a mastectomy. However, I have found it all very manageable and I am really pleased with the result. I am looking forward to my remaining breast looking as good as my reconstructed one!
I'm happy to answer question on the thread or by pm if you'd find that helpful.
I had the mastectomy a few weeks after a WLE (lumpectomy).

Hi water - what sort did you have? Did they take from your stomach or your back or have you had an implant?

How is your recovery going? I'm so glad you're pleased with your results. When you say that you're looking forward to your remaining breast looking as good what do you mean? Do they even them up?! I guess I should ask my consultant all of these questions!! Will now write them down. Haha!

Hi all

Felt much calmer this week. Surgery on Thursday for redo of margins. Can feel she's had a good rummage around. Feel much more tired this time round and a bit more sorry for myself but then I've had a surgery per month from May so hardly surprising.

My HER2 results were inconclusive at first. Something that was just casually mentioned over the phone to me by one of the bc nurses which sent me into a total spin. More tests done and it was negative so no chemo for that reason. Just one of the many rollercoaster moments...

Have a good weekend.

Hi Tony,
They took from my stomach - it is now very, very flat!!!
Yes - they offered work on the other breast to make them match with both the mastectomy and lumpectomy. They wait for about 6 months for the reconstruction to settle and then do the nipple reconstruction (if wanted). They they will do the other breast - so the nipple line up.
They removed 280g of breast tissue in my initial operation and so I would have needed a reduction in the other breast had I not had my mastectomy. However, the reconstruction has led to the size being increased to what it originally was. This means the op on my real breast will be a lift only (it would have been a lift and reduction).
The breast surgeon asked me what size I would like to be before doing the reconstruction, so I could have had a reduction if I wanted. I just chose to stick with what I naturally have. I actually asked him to remove as much fat from my tummy as possible - so long as this didn't result in an increase in breast size.
I was given the option of an implant and this was tempting because the operation is much simpler. My surgeon strongly recommended the diep as he said it would be a more natural look, would grown and shrink in size, alongside the remaining breast should I gain/lose weight and also would not involve further surgery (implants need replacing over time).
I am really delighted with the look of the reconstruction - it has a very natural shape).
My only complaint is that my new tummy button has been placed a little lower than it previously was located. None of my family noticed this though. It looks fine, it is just not where I expect it to be each time I look!

Sorry, forgot to add that the recovery has been very quick. The worst part was feeling unable to lay flat and stand up straight in the first few days. It felt like there wasn't enough skin in my torso to allow this. This lasted less than a week though. If I try and bend backwards I still get that same sensation but it is still just 5 weeks on.
I had never stayed in hospital before (2 home births and the WLE was Day surgery) I was absolutely dreading the whole thing, but it was far better than I imagined. The worst bit was laying under a bear blanket (heated blanket) for 24 hours during the hottest day recorded for 40 years!

Thank you water, for this positive feedback on the diep. If this third margin thingy comes back as not clear then I may opt for mastectomy with a diep recon. I don't like the idea of implants and can' have the lat dorsi thing as I do archery. However, hoping I don't need to go down this road but great to hear such positivity.

Hopefully your third op will do the trick Flying

Hello everyone,used to be a regular when I was diagnosed nearly 3 years ago.
WATER.... I was very interested to read your post re reconstruction. I am planning on having the op but don't want an implant.
Also just found out I have Lymphedema....does this affect surgery ?
Anyone else living with Lymphedma ?

flying I don't come on that often these days but lurk every now and then. I had an immediate DIEP last August (10th to be precise!) and have no regrets. i had hoped to have everything done and dusted by now but am on the waiting list for some lipofill to fill some minor hollows and nipple recon. To be honest my new breast is still settling down from the op so I'm glad I've had to wait this long. Hopefully the op will be out the way by Xmas but I'm relaxed enough about it all to wait until the new year. My surgery was at the Marsden and I can't fault the team at all

Overeggedit Thinking of you today and wishing you a quiet, peaceful night and a speedy recovery in preparation for the next steps.

Absolutely overegged...hope it went well...thinking of you xxx

Every best wish overegged.

Thank you for the reconstruction info. I have an appointment with the plastic surgeon tomorrow so we'll see how we go. Had the MRI today. Fucking horrible - will say no more on the topic.

Overegged - Hope today went as well as it could. Xx

hello to all new and old!

i am back from my diep reconstruction - almost 3 weeks on now, i was so convinced it wasnt going to happen again i didnt even pack until i had to leave the house on the day!

im feeling good, even drove the car for a 'pop' to the local shop today which is such a good landmark!

im only taking pain killers at night so i can sleep - i hate sleeping on my back!

the staff were fantastic, tho i ordered a tummy support from amazon while i was in hospital so it was waiting for me when i got home as the nhs one was uncomfortable curling up all the time

new boob is looking wonderful as is my stomach, just a small area still with dressing on

actual operation took 14hrs as the lovely surgeon was horrified at the state of the kidney op so she re-did my side while she was at it!

Hi all - thanks so much for all the kind wishes, you are all so lovely!! It went well, everyone at the hospital has been so kind, and I'm feeling so much more positive as I know the surgery is the main treatment. I feel like I've had time to process things, and starting to relax into life without 'certainty', which is new for me.

lookingfirbaubles glad to hear it went well, that sounds positive and glad you're pleased with the result!! Hope you continue to heal up.

cleanasawhistle I did read about lymphadena- hopefully someone will be along shortly though who has experience and tips.

Thanks again everyone, really appreciate it.

Overeggedit I'm glad you're feeling more positive

looking great that you are recovering well, and at the surgeon tidying up from the kidney op!

Tony good luck tomorrow. And sorry about the MRI. Medicinal if you fancy it!

Flying I hope you are recovering well

clean bugger about the lymphoedema. Hopefully royalmama will see your post, though I expect she's quite busy with school hols and recent move etc at the mo. She's had a fair bit of experience. Have you been referred to a clinic or taught any massage techniques?

LittleGreyCat fingers firmly crossed for your surgery, and wishing you a speedy recovery

I'm having another blood transfusion tomorrow so hopefully that'll give me some more energy.

I hope everyone had a good weekend. Sleep well!

Overeggedit,thank you,hope all went well with your op.

Chewing I hope you enjoy your holiday,take care.

Thanks Leslie, I was trying to think who had previously posted about Lymphedema.Just waiting for the clinic to send for me and I will be measured for a compression sleeve.Thats all I know for now.

Hope everyone is keeping as well as possible xx

Evening all,

Just back from my plastic surgeon consultation and am going for the immediate DIEP reconstruction if my abdomen has good enough blood supply. Surgery provisionally booked for 19th August. Got a day off any medical procedures tomorrow which feels like a treat, then back to my consultant Thursday night for HER2 final results, MRI results and I suppose a decision on actually going forward with the surgery. I'm so grateful for the work private healthcare but it's quite an opaque fucking system as I need to get the consultants to tell me how much the procedure is going to be and they get a bit cagey, and the insurance company won't tell me what the coverage limit is so it's like some sort of bloody poker game I'm doing between them both, where neither want to show their hands. I just want to know that I'm not going to get stuck with a ££££ bill. I HATE moaning about this BTW as it sounds so "my diamond shoes are too tight" but I'm not rich by any stretch of the imagination and am just lucky enough to work for a brilliant company with amazing benefits.

Thank you all for your brilliant info, water and mintyon the DIEP option, I'm desperately hoping that I will have a good experience as the comforting ones here.

looking - you are rocking that recovery! Can you tell me more about the tummy support please?

overegged - you sound brilliantly positive which is great. So glad you had a good experience with the staff

clean - Hope you get some info on the lymphedema

flying Fingers crossed for clear margins.

Hoping for a peaceful week for all.

Hi Tony
I luffs you too
So glad it's all going ahead speedily.

I didn't kick off my private health insurance (also through work) until the fiasco with trying to get a date for the hysterectomy but I find it strange that you don't know what your cover is. That just sounds weird. I rang up my provider and got immediate confirmation and an authorisation code within about 2 minutes. Mine is 2 million - it's clearly stated on my policy cover statement. I have no idea how much my op cost as I haven't seen the bills. I haven't had to deal with anything - the hospital and provider sort it all out between themselves.

Thanks for thinking of me Leslie. Unfortunately they've bumped me again - found out yesterday and was meant to be admitted today. Feeling rather sorry for myself about it all.

Hope everyone's doing ok and being well looked after. I've run out of emotional energy at the moment so sorry I'm not being more helpful/active! plus I don't have any experience outside my own so I'm not much use in terms of advice as my tumour being on the brain means it works differently to most cancers. for all!

SOOOOOOOO I went for what I though would be just a quick check up at Dermatology in my local hospital last Wednesday. I had a dodgy looking freckle/mole on my thigh which had appeared in the last 8-10 months.

Long and short of it.....I had it cut out there and then and 2 doctors both confirmed it was melanoma just from looking at it prior to the removal and during the removal. I couldn't watch the doctor removing it or I would have thrown up! It was about 7mm wide on the surface, not bleeding or cracked, mid-thigh and I ended up with 5 stitches and a 4cm long scar. I was given a LOT of information and was told adamantly that I would need a much wider and deeper area of my thigh removed. They kept saying that this was the first of 2 procedures.

I still have 3 more weeks to wait to see someone else at a larger hospital and to get results. I'm not sure what results they mean as I was told that it was definitely melanoma on the spot. What other information can be gleaned from the smaller removal last week? And what on earth did they find to be 100% sure that it was melanoma? Should I be overly concerned at this point do you think or not?

I am inwardly 'crapping myself' about what's going to happen but haven't allowed myself to cry or dwell on it at all yet but I can feel something bubbling up inside me sometimes and I just know that I will become a horrible ugly cry mess one day!

Any advice from anyone would be VERY much appreciated as I'm still pretty shocked about it all. A bit of cyber hand holding would be fab...

Here's a cyber hand Noordinarygirl. I'm sorry - this must have come as one hell of a shock to you.

I cannot offer any advice or guidance I'm afraid - I know nothing about melanoma, except that my father has had 2 removed over the last few years.

Someone will be along soon to offer more informed comment. In the meantime, I would let that bubble surface and have a yell, scream and cry. Cancer is shit.

Hi Noordinarygirl, what a shock for you.

I shall bring you two bits of good news, if I may. Firstly, good that it's on your leg. Very good statistics around leg ones.

Second, there have been a ton of new and fab treatments invented in the last couple of years. Surgery is definitely the 'cure' for nearly all melanomas. They'll want to get a 1 cm gap between the melanoma bit and the healthy bit. Which is why they are saying there'll be extra surgery. They'll stare at the sample to work out the best pattern for the next bit of surgery. Plus doing all the chemistry-and-geeky-testing to see whether that tells them anything useful. With any luck, that will be all they need to do.

Top tip - stay off Google. It's rubbish. The only relevant stuff is the brand new stuff that the teams have in their research notes. I stare at that stuff on the technical pages, so know the same info as they have just got on best treatments and ideas. But I'm not a doc and of course your team are going to be the best ones to discuss what's what. Don't hesitate to ask them. Macmillan run a good helpline also.

Meantime, hand holding...and