Hi Sassie - I thought I had replied to this but would appear that my phone has eaten my response! It is such a difficult time. I was dx similar time to you - Sept 14 and had mx with immediate implant reconstruction then started Chemo from November 14 to April 15. Implant got infected so was removed just before Christmas 14, then replaced with an expander in May 15 between chemo and rads.Inflated just before rads in July 15. Then had it replaced with permanent implant in March this year, had trouble with my pec muscle and a haematoma so back in surgery within 24 hours. Implant is now over the top of the muscle so al the lumps and bumps are visible - a bit like icing a christmas cake without the marzipan!!!
I had a horrible time trying to accept it this year and discussed with several plastic surgeons how we could improve it - do a DIEP or LD flap was the answer. Well I'm going to sit tight until something else goes wrong with the impant and then may have DIEP or most likely ask for a double mx as I've had enough of being cut up.
A friend of mine who was dx about 1 year ahead of me had her delay recon at the same time as I had the first one removed. Unfortunately the DIEP didn't survive so she had LD flap after a very long and emotional stay in hospital.She then waited another year to have implants in but came round from surgery with some minor lippo filling which gave no affect. Eventually changed to my onco plastic surgeon who did implant plus a cosmetic one to match the other side and recently she went back to have a nipple fashioned out of the skin. She looks fantastic - just have to get used to the patchwork effect of a bit of skin from her back which now forms her breast!
When you start out you do not realise the long long road to get reconstruction right. If I'd known I think I would have requested a double mx in the first place which would then have been the end of the butchery!
Hope you have the strength and patience to see this through and get a result you are happy with x
PS please go right on screaming (or cuddle a cute puppy/kitten!) - it works and that's what we are here for.
I thought I had been through it, my heart goes out to you,I truly hope you are now on the mend. Lets try to make you feel better, I had DCIS HIgh grade breast cancer, two months later diagnosed with oral cancer, my cousin died aged 30 as result of breast and oral cancer, common sense told me I had it in my genes, BRACA was not around. The NHS hospital insisted I had lumpectomy, they got the guide wire stuck in me, I acquired MRSA which delayed mastectomy, breast surgeon said I had only 3-4 months to get the cancer out of my breast so they surgically removed the infection - which cost us £2500! had oral cancer surgery 3 times, - we sold our home to pay for it all. Surgeon left the filling tube in me and the implant deflated, we had moved house because had sold it to release equity to pay, went to local hospital to see a lady who was described as one of the best! She replaced the painful implants which implants that are HUGE and more painfull than the deflated implants, I am tiny and almost tip over with these enormous implants. Today I received a letter telling me the CCG will only pay for the implants to be removed and I am expected to have nothing! Yep I am expected to have no replacement implants! We cannot sell our home again otherwise we will be homeless as this rate
sorry I've only just seen your post. I can't believe what rotten luck you're having. My friend once had a lumbar puncture and I can remember her mentioning a headache so I think this is a common however if yours is getting worse then I'm hoping you did phone the Dr's.
Let me know how you're getting on. X
Firstly many thanks to those that responded, it was great to get support and understanding.
I had had my lumbar puncture on Wednesday, of course it didn't go to plan as I couldn't lie on my side due to the scars on my tummy and breast. It was conducted with me sitting up and the junior doctor on the first attempt hitting bone and the second was too high and was touching nerves thankfully with 2 injections of local anaesthesia. The registrar was then called, more anaesthetic then he managed to get the needle in with some digging around. It then took 30 minutes to get enough fluid to fill the 4 vials.
In total the process took an hour.
once home I went to bed with a headache after taking some painkillers and slept for 3 hours. Yesterday started well with mild headaches which I controlled with a mixture of painkillers, lying down and coke for the caffeine. As the day progressed the headache became more severe and today I have had to lie down in bed or on the sofa. Getting up is a nightmare the pain is mainly at the back of the head, neck and shoulders. Paracetamol or ibuprofen is not touching the sides. Have started using dihydrocodeine during the day ( I had managed to decrease usage as the pain from surgery was disappating). My back is still very tender. I'm a wreck.
how do I know if this is normal? If I phone nhs24 they're just going to refer me to hospital and that will be a mare on a Friday evening!
Omg Sassie I can't believe what you've been through. Our journey is very similar in timing, my mastectomy was also September 2014 and I finally had my reconstruction on 3rd October. I had TUG using my thigh and have had problems with infection in my leg but it's now nearly healed.
Whilst I was in hospital I witnessed another patient who had had a diep reconstruction. She had a reaction and ended up having to have a tracheotomy to save her life. I know these cases are few but I can't begin to imagine how you must be feeling. Sometimes it's ok to not put on a brave face. I wrote a blog that gave an honest account of my chemo treatment and linked it to my Facebook page which helped my friends and family know exactly how I was feeling.
i really do wish you a speedy recovery and if ever you need to rant or chat please feel free to contact me. X
Hi Sassie. I'm so sorry to hear what a horrible time you're having. I hope they get to the bottom of what's going on and get your treatment sorted out quickly. Thinking of you and sending hugs xx
Wow. You've had a really tough, **bleep**ty, f**cking journey.
I don't think there's an awful lot I can say to make you feel better but thought I'd let you know that I've heard you, scream away, you're not on your own.
(Can you feel a hug coming through?)
Diagnosed with BC in FEb 2014 I had my chemo first then just before mastectomy I was diagnosed with TB, once treatment started I had my Mastectomy in Sep 2014 then radiotherapy until Nov 2014. Returned to work Feb 2015 on a pt med cert. Ft since May 2015
Waited for reconstruction (thought I was on waiting list but I had been missed!) and finally got it sorted and went forward with DIEP reconstruction on 13 October 2016. Just hours after the long surgery (9hours) I was back in as the flow from the breast had failed. Surgeon connected to another vein and I was back in HDU 3 hours later. By the following morning it was clear things were not going well, my resting heart beat was very high, I remember leeches being used to clear the blood collecting in the flap, ECg at beside and at one point I could see the defibrillator being brought in. Once stabilised I went back for my 3rd operation where the surgeons tried to reattach to another vein but after 4 hours the flap was deemed unviable.
traumatic time indeed but alas it was not to end there. My speech was slurred and I had weakness on my left side so ct scan was carried out. The house doctor was brutally frank and said worst case scenario you've either had a stroke or you have secondary brain cancer. Direct to say the least!
So 2 ct scans Later 1 with contrast and 2 MRIs (1 with contrast which lasted 90 minutes, not an easy task to lie flat with the fresh abdominal scars!) All showed as normal.
my tongue and uvula has atrophy to the left and I have difficulty clearing saliva and food. My tongue has fasticulations. The discharge letter for my doctor stated I had chronic CN XII and possibly VII/V palsy. Lumbar puncture has been arranged for 10th Nov and speech therapy on 11th Nov.
find it difficult to explain how I'm feeling. Glad that I survived the process and got a tummy tuck in the process! (Grasping at straws here) But emotional drained by the whole experience, struggling to find the resilience for the lumbar puncture and scared of the possible outcomes. Struggling with keeping my game face on, responding to texts and im's are a nightmare as I try to respond positively. Disappointed I haven't seen my BF since before my op. My husband has been a star, he's had do much to cope with. Just want to scream!!!!!!!!!!!!!!