It appears that many women are refused reconstruction options due to a lack of hospitals offering this despite guidelines.
Many face waiting times of at least two years but some a lot longer with some being refused reconstruction at a later point as you have said.
I was diagnosed just before Xmas and my treatment was delayed because of Xmas and new year now I need surgery and I have hit holiday season!
I am hoping this government will be more compassionate and not view this as an aesthetic surgery but one to restore a woman’s body due to a serious disease.
Congratulations on being a year from surgery today.
……I wish that was me I am terrified!
The holiday season is delaying everything so I imagine that is the reason you have a delayed mammogram however if you’re worried I would advise you to speak to someone to try and get it earlier.
Hi, regarding DIEP flap operations i can understand why this is not done in sll hospitals as it is quite a specialised operation with extra training in plastic surgery ss well as breast surgery, but you are right @naughty_boob and chakakhan that more options for reconstruction should happen in most major hospitals and more standardised care should be available to everyone. Hospitals should have surgeons trained in breast oncoplastic surgery as they do in my relatively small county hospital who can carry out all other types of flap based or implant surgery, it shouldnt be a postcode lottery, but i guess its down to the individual trusts to employ the right people and money of course. Breast reconstruction should be available to everyone according to clinical need and suitability.
@naughty_boob yes ive found it best to take loperamide as a preventative measure usually one in the morning and one in the evening seems to keep it manageable.
I’m genuinely shocked to hear that reconstruction isn’t available to everyone. I had no idea. I told my best friend who is of the opinion that if men had to lose such a physical part of their identity, reconstruction would be par for the course. I took it for granted that it was offered to everyone as part of the treatment journey. Now I feel extremely fortunate. I’m so sorry for the situation you find yourself in @chakakhan. Any news yet from any of the other surgeons you have approached?
Not gone as smoothly as hoped unfortunately. Got a small wound infection that refused to budge and heal - been over 2months since surgery. Because of that my radiotherapy has been put on hold - should of started 19 sessions including 4 boosters this week (due to margins). All a tad anxiety inducing the longer it’s delayed.
Had a vac dressing on last week (pico). Looked better when taken off yesterday, but cannot sleep tonight as my boob is itching like mad. On a bit of a downer truth be told. Managed a gym session today after over a week off, (didn’t want to disturb the pico) which helped moral, but this itch is a new worry. Hope its a sign of healing but you know how the mind works on symptoms, especially with delayed treatment.
Sound like you are recovering well. I’d have to google the surgery you had, not familiar with it.
It all seemed a simple process to start with.
I’ve not had my Herceptin with Zometa but I feel a bit rough after each. I had Herceptin on Thursday and ache all over(more than usual) and even needed an afternoon nap.
Zometa alone was like flu for 2/3 days.
Be kind to yourself your body has been through a lot.
Sorry can’t write more my kids have just arrived for a visit.
So sorry to hear you’re in such discomfort and feeling low. My op was Sept 13th 23 and my rads started on 22nd Nov so about 8weeks between. I didnt have an infection but I had a lot of itching from healing and my boob was very hard, red and swollen also had to have a seroma drained. I was fortunate not to have an infection but I think this is unfortunately something that can happen after any surgery and itching can happen when a wound is healing. I know our minds work overtime and stress can affect us in all sorts of ways. Try to keep calm a (easier said than done I know) and try to get enough quality sleep. This will all help you heal. I had a scare after radiotherapy with a huge swelling red hot boob and they did another biopsy just as a precaution. Thankfully all ok but still very red and sore to date. The treatments we are given seem to give us lots of extra problems and it can be very scary. My dcis margins we’re 1.5mm clearance and the invasive had a clearance of 2mm. The surgeon and oncologist didn’t think it was necessary to have another lumpectomy or chemo although this worried me at first I have accepted that they’re the specialists and have set my treatment plan that is best for me. Hopefully your wound will heal very soon and you can get on with the rest of your treatment and begin to recover. Sending you a big hug.
Should have mentioned that swelling and redness after rads was a typical side affect of rads and nothing to worry about.
Naughty_boob made a good point it could be irritation from dressing, I didnt think of that.
Definitely worth investigating whether you are allergic to surgical dressings. I was allergic to the drapes they stick on you in surgery. Blistered all over where they had been stuck and sensitive to adhesive since then. Post PICC line fitting but pre chemo the nurses gave me a range of dressings to stick on my leg to check which caused a reaction. Might be worth trying that. I forgot I had a hairy leg (no way was I shaving pre chemo if all my hair was going to fall out anyway) and ripped off the test dressings so my whole leg looked red🤣.
Anyone else having Phesgo injections? Mine started during my weekly Paclitaxel. Diarrhea after the injection and feel a bit rubbish.
Does anyone else gave this? And is it any better when the Paclitaxel finishes and it’s just the Phesgo injections on their own? The weeks when I have chemo but no injection are ok.
I think it seems normal then to feel a bit rubbish after the Zometa and I certainly had achiness and diarrhoea so that could be due to the Phesgo or the Zometa. Probably both. I was ok again on Saturday so I will know to expect the side effects next time. Great to have this group to double check on it all.
@entropy So sorry to hear you’ve had an infection and more to worry about. Well done on getting to the gym. It’s hard to stay positive all the time. I honestly think what we have been through is trauma and it leaves its mark. The mind can take us back there when any fresh worry presents itself. Keep posting so we can support each other through. It’s good to know that others have been through similar and can reassure. So thanks @jill2 and @naughty_boob as now I also know to expect these things to happen when I have my mastectomy and radiotherapy which are the next things to tick off.
@norts Definitely a few of us get diarrhoea after the Phesgo injection. I’ve not been off Paclitaxel for long enough to know if it’s better, worse or the same but I definitely got it after Thursdays Phesgo and Zometa double whammy.
However, I did get to go out last night and drink Prosecco in an actual pub and watch the football. Shame the outcome wasn’t better but it felt so good to do something normal again after these horrible months. The sun will shine again, literally and metaphorically.
Hi Jill
Happily, the itching calmed down after a couple of days, and now back in the gym every other day, which helps with morale. Last week was a tough one mentally, compounded by my trying out how taking tamoxifen in the morning, after having it at night for weeks previous, would make me feel. I was waking up every hour throughout the night when taken at nighttime, either hot or cold or just feeling too awake.
Taking it in the morning was worse. I was sleeping better, but discovered that 4-5 hours after taking it, I get light-headed and feel totally drained and hot flushes kick in waves of nausea, some indigestion, yet stangely hungry at the same time. About 12 hours later feel much better. So timing is key. Feeling good today after taking it at 7pm, so just when the crushing exhaustion kicks in is when its bedtime. Head clearer and more energy. I guess its finding out what works. Could be tricky once back at work as I do shifts, however, I suspect I can apply for day shifts only on medical grounds. Thanks for the support, hopefully on the up now - I think my wound may finally be getting there.
Jo x
Hi Jo
So pleased your wound is healing. I take my Leterozole at night about 9pm found this was better for me but dont sleep well hence feeling knackered in the afternoons. Well done you pushing yourself and going to the gym. Im 63 always been quite fit but finding things a little more tiring since November after starting the Leterozole I think the symptoms
are very similar. Never sweated this much when I was menopausal. Ive learned not to feel guilty if I have to have a nap when I can and just accepting it even though its as frustrating as hell. What would take me a short time to do I now do over two days. Urrgh!!! Here’s hoping you have a good week and you start to feel better each day.
All the very best.
Jill
Hi salbert. Sorry you’ve felt so poorly on the meds. I haven’t had to have any of those on my treatment plan but just wanted to wish you well and hope you feel better soon.
Best wishes
Jill
@entropy Hi Jo. It’s good to hear that you are on the up. Well done for working out the timing on the meds. It’s a really good point and definitely one to share. Really great to hear your wound is healing.
@jill2 Thanks for the good wishes. I’m fine again now. I just took my wig off to make my smoothie as it was getting in the way and I’ve just realised how cold my head is without it. I never realised how much hair keeps your head warm.
Good on you for not allowing guilt. I’m working on kicking that into the kerb too. I tried to do a 1980s workout last night (Yes, it was a YouTube aerobic workout to 80s music, not actually Jane Fonda or The Green Goddess) and I was so knackered after 5 minutes and 43 seconds that I decided I would not give myself a hard time and try to do 10 minutes today.
Well done you. Just ease yourself into it. I find walking is good for me. Never liked exercising much. Tried the gym once a few years ago and had to sit down and put my head between my knees, legs were like jelly I was so embarrassed lol, so never went back.
Just wanted to say thank you for being so supportive and starting this chat. Its been a great help to me and Im sure many others.
Onward and upward.X
Hi @jill2 Thanks for the image of you sitting at the gym with your head between your wobbling legs! That has given me my first laugh of the day.
It’s wonderful to hear that this chat has been a great help to you as it has been for me. I’d love to think it could continue to support and help other women. I’m only too aware that every day, women have to walk into that appointment and get the shocking news that suddenly alters the course of your life and takes over everything for a while. This wonderful website of amazing women came into my life when I needed it the most so I’d like to think it could continue to be there for the women who sadly don’t know they need it yet. And that has made me feel a bit reflective and emotional so now I am going to think of you sitting at the gym with your head between your legs again in front of all the gym bunnies before beating a hasty retreat and never going back, to make me laugh again!
X
Hi @salbert,
It is good to share experiences and tips and know you’re not alone. I take my hat off to anybody who can manage to keep up with any exercise after chemo and hormone blockers. I count myself lucky not to have needed chemo. This hotspell makes the nightsweats worse. I woke about 5 or 6 this am drenched ( and freezing cold shortly after) I’d only gone to sleep at 3ish though as my body has settled and decided its very much a night owl and will never accept more than 6 hours of broken sleep ( my fitbit backs this up).
After having about 10 days off from the gym Ive found it harder to run as long on treadmill and for last 5 or 10 mins I’m more out of puff and over-sweating hormone style, gagging for the end to be reached. I feel better after a run but crap on the day between. So instead of flogging myself to do half hour runs, aiming for 15mins/day, because life’s hard enough. In next drug experimentation, I’m thinking of using the stash of omeprazole I got given post op and never used, to combat the indigestion that tamoxifen is giving me.
@jill2.
They’ve been on it with rearranging the RT schedule, will be starting next Tuesday, so will only have been a 2 week delay - it does mean it now clashes with a music festival I’d booked sadly (unless well enough to drive up afer a Friday dose and come back late Sunday - I’m not optimistic on the chances of that being achievable after 3 weeks of radio). I was 52 when diagnosed, 53 now, still not menopausal before, but I am since tamoxifen, so new to learning what its all about - pretty crap really.
I doubt Ill ever be at pre-cancer energy levels, just have to accept the new snail-pace normal (will my employers lol). Perhaps a slower-paced job in future, but it could induce boredom. Can’t afford to retire for another 10 years. My mum was 63 when she got diagnosed but is still going strong at 80 after needing chemo and took it in her stride. Hope we all remain disease free after what we’ve been through, in the future.
Jo x
Morning Jo
Good news you have a date for starting the raiotherapy, shame you’ll miss the festival but you can go another time. I must be honest only had 1 week and 1 week boost but it did make me quite tired. Fortunately I have finished work so I dont have the added worry of trying to work with all the side effects of the treatments. The Leterozole I feel has aged me but Ive accepted it and go at my own pace I used to be “Jilly Whizzz” now I’m Jillys going for a lie down for a bit. Lol.
