After waiting to hear back from my surgeon I got a phone call from the service manager to say I have been on their list for 97 weeks and because of government guidelines I now have to have my operation in another hospital, they can't operate on me at my hospital or the next closest because lack of surgeons etc.
I have been told I will have to go to any hospital around the country to get me off the waiting list. Has anyone else had this happen to them? I was told I'd have the op in July or middle of September at the latest so what's changed, its so frustrating.
I was upset about it yesterday because I don't want a stranger operating on me and be far from my family. Now I have questions though. Will I need to go for a pre op at the new hospital? Will my aftercare be at my new hospital? Just thinking if it's hours away it's going to be a pain getting there etc.
Thank you for any advice.
Thank you for your reply Ruby, it's so frustrating that they just don't seem to have the empathy you feel they should have about the situation you are in.
I got a letter last week with an appointment for today, I'm assuming it's to give me an operation date and give me a chance to ask questions. However, after getting up early, I was just about to leave my home when the hospital rang to say my appointment has been cancelled due to the consultant being ill. I asked if my operation will still go ahead this month as planned and she said she doesn't know when the operation is, only the surgeon knows this, I can't get my head around the fact the surgeon has obviously booked my operation and I assume everyone who is needed will be aware of it but his secretary doesn't know and therefore can't give me anymore information other than to say she now needs to look at the September schedule to make a new appointment. Why can't they leave the op as planned and just schedule this appointment for another day soon? It's just so frustrating.
Sorry about having a rant, it's just not been great since I had the 2 ops to remove the cancer, you just get brushed aside.
I hope this finds you well. Take care and thank you for replying.
Hi Sue I did have a Licap flap but reading your post that doesn't sound like the priority issue - reading about your experience with your surgeon and nurse made me feel quite nervous. Because I too got very stressed about my op because of the relationship with the team (though in my case I had a very good surgeon who was as good as his word and really seemed to care both about me and also his work) and what I learned is that to get this all clear OR change hospitals so that you can relax. I had a long delayed healing due to the stress I was under by poor communication with the nurses and had exactly like you, the regular breast care nurses did not deal with the reconstruction. If you are having reconstruction you really need a reconstruction nurse on hand.
I need a bit of advice, I was going to start a new topic but thought I'd ask you ladies your opinion.
So I emailed my breast care nurse about my next reconstruction operation asking if she knew when it would be and what the procedure was called, she rang me back and explained that she dealt with the breast cancer side of things and that the reconstruction department dealt with my type of operation, anyway, she did say she couldn't see anything on my file about the operation, what it was called or when it would be but suggested it could be next year. She suggested I'd ring my surgeons secretary because she would have typed his notes up and booked me in for the operation.
Yesterday I rang the secretary and asked her the same questions, baring in mind my surgeon penciled in my op for 20th July and just needed to check the availabity of the 2nd surgeon. The secretary said there was nothing on my file about the operation at all so she couldn't help me, she also said she had not been asked to write up any notes or book an operation for me. She kept going off and coming back saying she can't find anything about me even having the operation. After insisting she looked into it further she said she had found the days clinic notes that said I had been seen to discuss a perforated flap breast reconstruction but my surgeon must have forgot to send her the relevant notes for her to write up and because of this nothing has been done, she even said if I hadn't of rung her nothing would have been actioned and I would have been forgotten about!
My surgeon is on holiday now until the middle of July but she said she will speak to him and ring me back by the end of July.
This may sound petty but it really upset me, I'm anxious about the operation and just want it sorted now, I've waited over a year and I understand why but it's still a worry. If I was told it would be next year I could accept that and put it out my mind but being told its almost certainly July or September at the latest plays on my mind.
Sorry I'm rambling, this isn't the first time my surgeon hasn't done what he said he was going to do, ie ring me back or book the next appointment, he has forgotten to pass on my information to the secretary twice now and if I'd not rang to see what's happening I would have been forgotten about. It's worrying that he is so disorganised and I'm having to trust him to do a new procedure on me. Should I complain about it? Or should I just wait and see what he says once he returns from his holiday?
Thank you for your advice.
Thank you so much for your reply. It was really reassuring to hear you are doing well. How are you now? I hope the worst is over and you have no further treatment to undergo.
Best wishes x
HI @SueDerbyshire - I had a LICAP in February along with axillary node clearance. I came home the same day. Took painkillers for the first few days but it was never painful as such, I took ibuprofen to help with the swelling. I had my drain in for nearly 3 weeks - and being honest the drain was the worst part. I was able to do all the exercises and have regained good arm movement. Was up and about the next day and went for small walks after a couple of days. My scar healed really well and is very neat, I have started wearing a normal bra now and it is hidden beneath my bra so no concerns about trying to cover it up.
Hope you find some more info from the nurses about which op you are having. x
Hi, thank you so much for your reply.
I had Lobular BC in 2018, so already had 2 Lumpectomy's and 23 sessions of Radiotherapy. However, I was offered a Mastectomy or breast conserving operation and I chose the latter. However, in hindsight I wish I'd gone for Mastectomy instead because now my breast is very disfigured and much smaller than my right breast, therefore need an operation to try and put it right. I wasn't given a choice, just told what was going to happen which is fine but now I have no idea really what will be happening. I've emailed the breast care nurses today so hopefully I will get an answer soon.
I really hope you recover well and your radiotherapy went as well as mine did. If you have any questions just ask x.
In the meantime, take it easy and look after yourself. Thank you again for replying it has really helped.
Hi Karen, thank you again for your reply.
So it's all quite new for you then this time round. What type did you previously have. So sorry you are going through it all again.
To be honest now I'm near the end of my treatment my mind is now worrying about getting it again, strangely worrying more about getting it again than when I first got it in 2018. I was really strong, supporting the family etc and knew I'd be fine. I had Lobular BC, 2 operations and 23 sessions of radiotherapy and dealt with it really well. I'm on Tamoxifen until next March so started getting a bit anxious of catching it again which has really surprised me.
As for the next procedure I have emailed my breast care nurses to see if they can check which procedure it is, hopefully then I can find out some more information.
How are you feeling today? Sore I'm guessing. How did you deal with hearing the news you have it again? Was you on Tamoxifen? Make sure you take it easy now.
I had a LICAP in April for 3cm er+ her2- IDC with 3/16 positive lymph nodes. Happy to answer any questions. My op included full lymph node clearance. I went home the following day. Happy as can be with a long but neat scar under my armpit and breast - can't believe how much the surgeon managed to do thru that one cut. Came home with a drain in place for 5 days and felt a bit sorry for myself those first few days but that passed quickly. Took all the pain meds I was offered and try and keep up with all the arm exercises - should probably do more but getting good range of movement. Went for walks from day 2 onwards, starting small. Still a little swelling under the scar but its going down. A little cording in abdomen but its no bother. Around the scar feels numb still. Starting chemo in a few weeks followed by radiotherapy and tamoxifen. Hope that helps, feel free to ask any other questions. x
Im hoping someone will reply to you that has had this procedure. I know the Consultant I saw does offer it as information on their website. I thought I’d seen it somewhere.
I was diagnosed in January 2022 in right breast, after having primary in left breast 2013.
I had re excision yesterday as no clear margins in February. I was offered mastectomy and reconstruction, but decided to try again.
Good luck with your treatment. You can always ask for a second opinion. They don’t hold it against you, after all it’s your body.
Best wishes, Karen
Thank you so much for that link. Unfortunately It doesn't cover a LICAP because of it being so new I guess.
I have found quite a bit of information on the operation itself but was hoping to hear from anyone that has had the operation.
After seeing my surgeon I came out with more questions than when I went in but I know that's normally the case.
I didn't get a choice of operation, just got told I'm having that one but he was very brief. I asked a couple of questions but he was brief with his answers so I thought I'd just check it out when I get home. I'm not even sure if it's that procedure, he didn't tell me the name but said he would take the flap from just under my arm, no mention of back. Maybe I should just be patient and wait but it's hard lol.
Anyway, I hope your treatment is going to plan. When was you diagnosed?
Take care and thanks again for replying.
I’ve not had that procedure but was considering DIEP. The Consultants/BCN gave me these booklet, you can view online here https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/understanding...
Hope this helps. Best wishes, Karen
Hi, yesterday I was told by my surgeon that I will soon have a reconstruction procedure. He explained briefly what the operation entailed and it wasn't until I came out that I realised he hadn't told me what the procedure was called. My surgeon did say it was quite a new procedure which makes me think its a LICAP or Tap procedure, using the description he gave me.
My surgeon is hoping to operate in July with another surgeon assisting and I'll be meeting them a couple of weeks beforehand to go through the procedure in more detail. Obviously I am now keen to find out more about it and was wondering if anyone else has had it done, how long was you in hospital for? How was your recovery?
I wish I'd ask more questions at the time but my surgeon seemed very rushed and almost pushed me out of the room because he was running late. So any help would be really appreciated.
Thank you for any help you can provide x