@chakakhan I think it is something of a postcode lottery. I’ve discovered along this journey that procedures/timescales/testing varies from one health authority to another. I have discovered this by speaking with other women. One of them had to wait absolutely ages to get her results back from America, was told the only option was a mastectomy (although I wish this had been given to me and not all the unsuccessful lumpectomies) and now she has to wait two years for reconstruction. Why have they denied you the option of DIEP? What have they told you about reconstruction?
xx
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Hi Salbert,
They said the hospital couldn’t do it within timescale, capacity etc.It was all a little vague over the phone from my BC nurse and I have no real clarity.I will ask for the correspondence outlining the reasons and go to my MP.
They said it would be two years at least for a Diep and I have heard of stories of this being a lot longer in reality.
I thought each hospital would follow the same procedures and pathways due to evidence based research but it seems not.
I wish I knew this at the start of my journey.
Results back from America is that relating to tests to see if you need chemo or not?
It must be awful to have repeat lumpectomies and I do not know why you were not offered a mastectomy sooner.
I am recommended a mastectomy but want a lumpectomy.
However this is not always straight forward as in your case which can lead to repeat surgeries which must be very distressing.
I have been given no information regarding reconstruction or mastectomy.
Xx
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@chakahan I’ve DM’d you. XX
Two years wait for reconstruction is what my friend in Kent has been told. It seems a long wait. I get a tissue expander put in at the same time as the mastectomy is done which they then expand over the next six months before finally doing the reconstruction six months after the mastectomy. Why can’t they do that?
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And yes, the results from America were to find out exactly what the cancer was and to work out whether she would need chemo. She didn’t.
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Thanks for your message,…I will ask about that…is that for an implant or DIEP? Xx
Do they always use tissue expanders? Xx
Woohoo!!
You did it. You just made me snigger when you said you slapped a bench. Thats so funny, next time I pass a bench, I will also give it a slap. I really think it’s the next big thing. Everyone can join in and the best thing is nobody knows why you are doing it. The bell thing was difficult for me, I don’t like drawing attention to myself so rang it so gently, more of a ting ting ting.
Take time to recover, your body has been through so much.
Have a great weekend. 
Oh @chakakhan im so sorry to hear you are stressed. It so understandable from what you have said. It’s wrong that the DIEP reconstruction is only available at selected hospitals. From what I understand in South Wales you can only go to Morriston Hospital in Swansea for reconstruction. For some that is 70 mile journey which is not good. It’s not a day surgery so, how can your partner/husband/family/friends visit? The ‘local’ hospital only do wide local incisions or mastectomy without reconstruction. I’ve lost heard that many are then refused reconstruction at a later date as it’s not part of the cancer treatment!!! It’s all so wrong.
Hopefully the new government will make some changes but it won’t be early enough for you. I’m so sorry that so many doctors are on holiday. I am 1 year today from my surgery and should be having my annual mammogram this month but have been told it’ll be September. No reason given but I can only imagine it’s to do with staff holidays. Last year I waited longer than usual for my lab results due to holidays.
Maybe you could ring the BCN nurses or MacMillan for some help with finding another surgeon and also your wellbeing. MacMillan are open 7 days a week nd you can obtain counselling from them.
- Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Keep us up to date. We will support you as much as we can🥰
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I’ve just remembered that I was advised to take Lopermide before the diarrhoea starts especially if it happens every time. It gets to work in advance lessening symptoms.
Obviously I’m not giving medical advice so you might want to double check with your team that it OK for you to do.
Hi naughty boob,
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.
Thanks for the contact numbers and support.
I will keep you posted Xx
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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.
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Hi everyone
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?
Salbert
x
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Hi everyone
I had my first Phesgo and Zometa combo yesterday. Feel rubbish today. Is that normal?
Thanks
Salbert
x
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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.
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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.
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Hi Entropy
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.
Onward and upward.
Jill
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Hi @entropy
The itching could be allergic reaction to the dressing. Can you call the breast care team for advise? If not out of hours GP or minor injuries?
You are doing great going to the gym, I struggle even after 6 months post chemo and radiotherapy. Still having Herceptin which has its own challenges.
Take care
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.
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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🤣.
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