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

Oh god chewing....may as well save time and start nagging now...!! Everything crossed for you for immunotherapy....xxx

Hi ssandballs. You might be having a lumpectomy rather than mastectomy and they will take out lymphnodes too. The latter op takes the longest to get over as under the arm is sore and it is really important that you do the exercises they give you.

My cancer was also grade 2 invasive ductal HER2- oestrogen positive. I have had a bit of a rollercoaster ride with four surgeries. The first umpectomy was fine lymphnodes clear (this is the most important bit) but margins of the lump not clear. This essentially means that the cancer that they can see, ie, the lump, is gone but there are cells (that they can't see) too close to the healthy tissue.

Unfortunately, I was a somewhat rare case in that I had three surgeries for margins. I have had a surgery a month since May. But, I still have my nork, which although has a smiley scar across it, is a fab shape. My other nork is going to be reduced and lifted to match next year.

I would check if you need a mastectomy because for grade 2 lump they generally do a lumpectomy but you may have areas of scattered DCIS, sort of precancer cells, there so they do mx for that. Do ask though because you can't put a boob back. Also ask about immediate reconstruction.

Once you have had your op, then your cancer is tested and stained to find out more about it. Mine was also sent to California for oncotype testing. I didn't have to have chemo but met two amazing ladies who did who said it wasn't that bad. One worked all the way through hers! They both looked amazing.
Grade 2 generally doesn't mean chemo but if you are HER2 positive then they do give chemo for that. It is unusual to be both her2 positive and oestrogen positive.

Support of friends and family is really important. I was out and about the day after all my ops except this last one from which I was a bit poorly. You can't drive for a couple of weeks (i drove after ten days short distances). Your stamina is a bit shot but actually the operations are not that bad. Pain is very managable. Buy soft crop tops from ASDA or Tesco for £5. I got a lovely padded mx bra from Debenhams - you get vat taken off if you are a bc patient. Mx bras are actually exactly the same as normal ones they've got a cotton lining between nork and outside (so you can bung in a prothesis) which is better against scars.

If you do need a prothesis, knitted knockers make soft, squishy knitted ones.

Best of luck and you will be fine.

Good luck Tony for today onwards.

Glad you had a good holiday, Leslie.

Fingers crossed for the immuntherapy, Chewing. I hope you hear something soon.

Hello all. leslie glad to read you had a decent holiday. Custard creams soubd fine..never thought of them before! Thanks for asking about our move. It was exhausting and stressful tbh. I ended up with a swollen hand in ky affected arm. Good thing this happened while I was going through physiotherapy. The physiotherapy nurse told me off because I didn't take it easy
Amyways, we are somewhat settled now and I'm busying myself with decorating in between entertaining the DC..not fun!
chewingI'm praying you get the immunotherapy treatment. It's great your doctor is recommending it as it is so promising. Hope all goes well.
mrs how is life treating you? Hope all's well.
Waving to each and every one of you.

Hi Flyingprettycretonnecurtains

Thanks for your response. Yes mine is defo going to be a mastectomy. To be honest I was very shocked & didn't want it done, but now I just want it off, no matter what. Then I am not left thinking if there is anything else lurking there.

I have had my MRI today so will hopefully get a date for surgery last next week. The MRI is to determine if I can have a reconstruction, which will be done at the same time as the mastectomy, but If i need radiotherapy it will be done at a later date.

How the hell do you cope with 3 lots of surgery? Thats another reason for me to have the mastectomy.

I already have the crop tops from asda thanks, they are so comfy. As the bruising from the biopsies still hurts & I have massive boobs, so wearing a underwired bra is torture at the moment.

Thanks again for your info & i will look at knitted knockers too! Best wishes to you x

Welcome Sass how was your MRI? I felt much better after my surgery knowing the cancer was out. I hope you get a date soon.

chewing hopefully a flying pig will bring you your appointment date shortly, without you having to chase...

royal sorry about your hand, though lucky it was during physio. I hope you're taking it a bit easier now. Don't envy you decorating during school hols at all! I'm glad you're settling in though. I hope you'll be very happy in your new home

Tony I hope you are settled and ready for tomorrow. Wishing you a smooth and speedy recovery

All good here apart from acid reflux. My antibiotics limit when I can take indigestion meds so I'm just trying to ignore it, and eating medicinal chocolate hazelnut gelato

Good luck tomorrow Tony - Hope everything goes well.

Thanks to water, baubles and minty for sharing your positive experiences of DIEP reconstruction.

I got my scan results yesterday and am now going ahead with the mastectomy followed by immediate DIEP reconstruction and it looks like surgery will be in a couple of weeks - it was really helpful to read your posts. I'm still uneasy as unbelieveably there may not enough belly fat to match my good boob masses of spare fat on my arse though and it seems a huge op to go through and then be left with a very poor match. Did you all have long waits to get both sides evened up?

Flying I was really pleased to read that you finally got clear margins after all the surgery.

Sass I also was very shocked and found it hard to accept I would need a mastectomy. I've had a bumpy few weeks, but seem to be calm again now I've finally accepted it's the least grim option out of a pretty shitty set of choices.

to everyone and hope you have a good weekend.

Lost, I too was told that my mound would be smaller than my removed greasy due to limited tummy fat (my thighs and bum could, however, serve an army. However, my mound is a perfect size and the surgeon either did wonders or there was more fat lurking than expected!

Greasy??!! Weird auto correct for whatever typo I wrote when meaning to type breast!

water sorry but laughing at your greasy breast here!

Leslie that gelato sounds most excellent!

chewing glad there seems to be a 'next destination' for you. I'm using you as my inspiration to keep badgering people and not let them forget me!

Received an MRI appt in the post this morning - 8th September. Seems forever away - fingers crossed I'm all op-ed by then and don't need it. Also the copy of the letter from my general neuro to neuro-oncology basically saying 'i told you she needed an MRI asap. As you've not done your job I've booked a new one. Sort yourselves out'. I think I love him a bit!

Happy weekend lacies delete as applicable...

Thanks WhatWouldLeslieKnopeDo The MRI was ok, lasted for an hour & was comical trying to get comfy with the cannula in my arm & dangle my boobs in the boob bucket. I didn't think it was an hour, thought it was only about 30 mins & think I dropped off at one point. Fingers crossed I get to find out next week.

LostMyLunchMoney Thanks, I am quite calm at the moment, think as much I am wanting the op, once I get the date, it will give me a wobble. I love your perspective on it. I just want it over with & get on with my life after this blip.

Hi everyone,
Old poster here who hasn't been on for ages, but got my annual mammogram appointment through which brings it all back!! I've just been to Florida for three weeks and feeling so grateful that I could fulfil my promise to take my dd there this year as our planned trip last year never happened due to my treatment.

I think last time I checked in my MIL had just been diagnosed with BC as well. In the end it turned out to 5cm, she is waiting for radiotherapy now but they have decided she doesn't need chemo. In my understanding I thought they automatically gave chemo for anything over 2 cm, but obviously I am wrong???

Special hello's to Amber, Royal and Chewing x

Good morning lacies.
fresta lovely to hear from you again. So gkad you enjoyed Florida.
I had my mammo two weeks ago too and know what you mean! Hope your results are reassuring.
I think your MIL may not have been offered chemo because of her age, but I'm only speculating here. I would've expected with that size tumour that she is a sure candidate for chemo. Do you know what stage she is at?
Hope everyone has as good a day as possible. I had a good night's sleep( not something I tend to enjoy on average ) despite waking early.

LittleGreyCat I'm glad you've got an appointment and that the neuro on the case, but grr at more waiting

Sass I'm glad it went alright. I'm very glad I got to lie on my back for mine (liver) as the boob bucket does not sound fun!

Fresta I'm so glad you made it to Florida. I hope you had a fantastic time. And I hope MIL's treatment goes well. Like royal suggests I think the chemo guidelines are different in older people. Fingers crossed for your mammogram

royal a good night's sleep makes such a difference, but sorry it's not a regular occurrence. Is it hot flushes keeping you awake?

I had a bit of a bleurgh day yesterday so I'm lazing about. I expect to feel a bit shit sometimes given that I am having chemo, so get a bit annoyed with everyone fussing me and worrying

lunchmoney from what I understand from a DIEP op, the surgeon will remove fat evenly from your abdomen but only use the fat (70% rings a bell?) that is connected to a viable blood vessel. Most single breast reconstructions just use one blood vessel but my surgeon used 2 so i had all the fat re-used. Not every surgeon does this type of op (think it's called a bipedicled or stacked flap in the medical world) but might be worth checking?

I've been left with a very cosmetically acceptable reconstruction but it is probably a cup size smaller than the other side. Not enough to warrant a reduction of the healthy breast and generally not too noticeable to other people in a 't shirt'type bra but it is something I am aware of from time to time.

I had my op last August and am now waiting for nipple recon and some lipofill to a couple of areas of the new breast. Hopefully this will be done October time otherwise it will be sometime in the new year

Hi Leslie sorry to hear you've not been feeling great. Of course chemo is not fun and yes people who've not had any assume fretting.over you will work wonders How many more chemo cycles to go?
As for my sleeping disorder, well it is not really specifically hot flashes which are keeping me up. It's like I can't sleep without waking up every hour now. I read that menopause in general is the culprit. Oh happy days and nights

Oh royal that sounds exhausting! We women really do seem to get a raw deal I hope it starts to improve soon.

No idea how many cycles. I know of someone who has had over sixty of this regime! I'm on about 24 at the mo. I'm just having three monthly scans so it's just a case of waiting until it stops working.

minty how are you? I hope you'll get your procedure in October :) it'd be nice to have it all over with before the new year

Thanks for asking leslie. I feel like I'm existing most of the time to be honest. Working full time but my office has changed so now have min 1.5hr commute each way (that's London for you!) So pretty exhausted most of the time. Not helped by menopausal hot flushes and sleepless nights that I'm still getting nearly 3 years on...

5 more herceptin to go. had hoped to get everything out the way by my big 5-0 birthday in Nov but thanks to the break my last treatment is 4 days afterwards . I had wanted to have a big party and celebrate feeling fabulous but with comfort eating and the heart pill side effects I'm now back to post chemo weight (first time round) so feeling far from fabulous! My plastic surgeon is great and is going to get my next op done as soon as he can but if it gets too close to my birthday I'll just put it off to next year.

Maybe I'll just celebrate when I have a tattooed nipple, no heart pills and my port is out . Sorry to moan you did ask!!

I don't post often unless I think I can help but I lurk here every now and then. As always I'm l impressed with how you keep this thread alive despite your own troubles

minty no need to apologise. This is the place to moan! The commute sounds exhausting even without anything else going on.

Frustrating about the herceptin interfering with your party plans too. It would've been very tidy to finish before! :) I think you should go ahead with your party anyway though. I bet you are much more fabulous than you feel. When will you have your port out?

I am planning a party later this year too. It'll be five years since my original diagnosis. I'm not really sure what to actually do, but I want to mark the occasion and celebrate hopefully still being here.

I hope everyone is having a good morning. Lots of people have been quiet recently - thinking of those awaiting results/appointments, recovering from surgery, or just to plodding on through treatment

Hello all lacies. I continue to lurk, but didn't have much to say. I'm in that weird post treatment stage where life will never go back to what it was and trying to relocate myself. I have signed up for a Maggie's course, and I also got my GP to refer me to a gym/activity programme. I started before the school hols, and of course it went out of the window, but I'm back on it now.

I'm sorry to hear about so many insomniacs. My sleep was rubbish, and my GP prescribed Zopiclone, which really helps. Being tired makes everything so much more difficult. I also take melatonin, and mostly sleep quite well, apart from the sodding hot flushes of course.

Annoyingly, I have fibroids, which cause really horrid bleeding and flooding, gynae has recommended a hysterectomy, but I really cannot face a further major surgery and recovery, and that's without all of the logistics of arranging childcare etc. I'd hoped that Zoladex would sort it out, it has reduced the symptoms, but not completely got rid of them. I am very p'd off with the crappy gynae I saw almost two years ago, and then again after dx, who didn't even identify that I had fibroids, when apparently they are slow growing and couldn't be missed! Gutted because they probably could have been sorted out much more easily, and I also may not have had the anaemia issues. I requested a referral to a different gynae, who also took biopsies, I did have some done approx 6 months ago, which were clear, so I'm hoping there's no more issues there. I have requested consideration for embolisation, so fingers crossed.

As you say Leslie, we women have a lot to deal with!

In other news, I got a kitten, who is just gorgeous, and DS is very chuffed too.

I've enjoyed not having too many hospital appts over the summer, just 3 weekly herceptin and 4 weekly zoladex mostly, along with some cardiology reviews.

Big wave and hugs to everyone.

Hello everyone
I haven't posted for a short while because I'm feeling great! I'd forgotten what it's like to feel 'normal', ie no chemo brain fuzz and able to bend down and pick things up off the floor (nearly 7 weeks post-op).

I've been shopping, driving, going for walks and having a holiday from work. I may even attempt a little light gardening tomorrow.

I have a week before it all kicks off again - chemo scheduled for 30th and weekly thereafter. I do feel stronger for having the break. But don't get me started on how crap the hospital was on managing my op, the fact that the bill for my op was more than double what my private health insurance normally pay, and my formal letter of complaint which remains unanswered....

Good evening to all lacies new and old and young and old
Nice to hear from Fresta, Flippy, Minty and Royal.
Twitter - good to hear you're feeling better but sorry your hospital was a bit crap.
Leslie there have been no flying pigs go by so I have once again reverted to chasing my appointments. Anyone want a bet on how long it will take to get my urgent rads? The lump is growing daily and getting uncomfortable. What happens when it gets bigger than the boob??

Er chewing this is bloody awful...have you managed to chase?? Am freshly appalled at your treatment.. ..

Hiya @freddiemercury. I chased again today and it turned out that the letter had been typed but not signed. It has now apparently been faxed across so I am hoping to get an appointment date tomorrow. Wish I had chased straight away but was really hoping it would go smoothly this time and that NHS admin would get it right. You'd think I would have learnt by now

How are you enjoying the hols?

Flippy I'm glad you have had a bit of a break from appointments. Well done for your gym! And sorry you've now got gynae things to deal with fingers crossed for the embolisation. And yay for the kitten - hopefully (s)he is a nice distraction :)

Twitter great to hear you've been enjoying some normality. At least after a break the cumulative side effects are sort of reset, I've found anyway, so hopefully you won't feel as grim to begin with! :) sorry the hospital have been messing you around I'm always surprised by how much admin seems to be passed on to the patient - isn't that part of the service you are paying for?!

chewing I'm not at all surprised, but frustrated on your behalf I'm sorry the lump is hurting. I hope they hurry up now the letter is sorted. Sadly I think you'll just have to keep nagging at them. But you really shouldn't have to!

It's gloriously sunny here and warm. I hope you're all getting sunshine too!