77.3K
members
302
online
1.2M
posts
Turn on suggestions
Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type.
Showing results for
- Home
- :
- About luluspice
luluspice
Member
since
01-05-2012
33
Posts
0
Hugs
02-06-2016
08:02
Having had the Tissue expander with implant then Rads my implant had to be removed as got capsular contracture. I had the LD- muscle & skin & tissue from back. I wish I had that at start as it feels so much more natural unlike the other side which still has implant as I only had Rads on one side. The PaP & Dieps mean that tissue can regrow to some extent and conect with your skin etc..more natural process. Good Luck with it all. xx
... View more
02-06-2016
07:44
Hi Moulins, I am in glasgow and I have just found out my surgeon's list is fully booked through to September and I am not on the list! I am so upset - he promised me asap he agreed this has gone on too long..4 yrs since DX. Says it is out of his hands & down to management. I cannot see why I am so far down the list, surely no one recently DX is scheduled for surgery that far away? I have had my reconstruction redone due to capsular contracture. I first had Bi lat with tissue expanders aug 2012, with implant replacment a year later - Oct 2013, then when CC happened I then had to have LD Oct 2014 ...another year later, and another fix last October 2015!! I am supposed to get lipo modelling and a few fixes, scar realease and medialsation, but now it looks like not appointment until October onwards - again! While I have no worries about cancer this surgery waiting game has meant I cannot move on and put it all behind me. I was hoping to celebrate my 60th Birthday in December and not be under effects of recent surgery. I want to complain but do not know who to and would it make any difference? I am in pain as well as the body image & confidence issues!
... View more
13-05-2016
05:28
H Girls, I am just catching on to this thread so excuse if I ask what has been answered 🙂 I am fed up as has been 4 yrs since diagnosis and i am stil in this 'Realm' chemo March- jume 2012 Bi lat MX with Expanders Aug 2012. Rads 5 weeks Nov - Dec 2012 Oct 2013 implants exchanged but by Jan 2014 Capsular cont on Rads side. so had to have LD Oct 2014 Oct 2015 Medialisation..they were going sideways! Now...still not settled right. Left side is hard and uncomfortable , right side seems to be pulling to the right again. Plan is lipo modelling to creat cleavage and even out dips & lumps. I have been readin about the Fat stem cell transfers and wondered is this same as li[omodelling? How successfull has it been for any of you? Has anyone had this Fat stem cell after lumpectomy ( Daughter in law is at the discussion stage of surgery) Many thanks for any advice or info xx
... View more
08-06-2015
02:42
Hi UWP, cannot best advise re lost nail...other than keep it clean, but my BCCN told me to pain allt my nails with a dark nail polish as some chemo drugs make them sensitive to light...they are like you hair. I had my acrylics done in deep red...quite the giggle to my chemo nurse..I would turn up for juicing in my colourful scarfs & fedoras complete with lovely bright red nails...hands & feet! W wee indulgence well deserved at an awful time. I hope the rest of Chemo goes well. Eat well even if no appetite..fresh pineapple was my saviour from dead taste buds. xx
... View more
06-12-2014
01:11
Hi Naz, sorry for not replying sooner, been a bit all over the place. Boy you are awesome! You really have been through it! I had my LD 30th September, and it went well, apart from scare when dressing didn't get changed even though I told staff breast was hot n painful and dressing was wet. I ended up with inflammation and was scared graph etc would fail. So far it's ok. Only had LD on left side as implant failed due to capsular contracture....had radiation on that side only. Right now feeling like hell. LD is fine, just the rest of my body is exhausted and sore! Why do all these guidance notes play it down, 6 weeks recovery??? Maybe if you never had chemo & rads to damage your system?? GPs are no use, platitudes of 'well you've been through a lot' Doc speak for I have a clue on cancer treatment effects I think! Next yearbI get the other side implant exchanged for a becker implant, a bit of lipomodelling and hopefully get an end to this hellish journey and be able to move forward!!
... View more
22-11-2014
06:32
Hi, I wonder if anyone has had same experience as me? I had Bi-later MX with tissue expanders in Aug 2012. This was after 6 doses of Chemo. The expanders were exchanged Oct 2013, however in Jan this year 2014 my P surgeon said due to the pain and movement of implant plus capsular contraction on the iradiated left side, the implants needed to come out and I needed an LD with implant. This was done 30th Sept. My right breast also needs sorted as it too has moved, but not getting LD on it. It is looking like it will be another couple of years before I will be done with all these operations & procedures. ..In time for my 60th Birthday in Dec 2016 maybe! It has been one he'll of a long journey. Anyone else having these problems...or am I what it says on my diagnosis reports...A complex case! Lol
... View more
05-06-2014
09:46
Thanks everyone for advice & support. I had my bloods tested again and in my GPs words. 'your bloods are fine, there is nothing wrong with you' Talk about insensitive eh? No explanation or treatment offered for the terrible dizzy turns & head/ear pain. Felt as if he was saying, 'For gods sake woman you had cancer is that not enough, don't be greedy' Spoke to my Onc nurse, she is going to have a word with Dr Ritchie, but I do not expect her to get back to me. I got shingles on my face at New year & the pain in my head was awful, this is similar pain and am thinking this is a bit of postherpatic neuralgia. What is upsetting me is the way no one in medical profession seems to know or think that all the Chemo, surgery, Rads we get hit with can have a debilitation effect on you this long after 'Active' treatment. I don't think enough is done for post treatment folk. I'm not worried about still having or cancer returning. I am pretty confident my treatment was successful - even if Docs won't say that. I'm just so tired of this train ride, never expected to be feeling like this 17 months on! Then again, never knew what was ahead of me, never having had or known anyone with BC before! Just a wee bump on the tracks, I will bounce back soon enough. XXX
... View more
06-05-2014
10:44
Hi there, My 'lump' was like a large grape rolling under a table cloth. in my armpit. I swear it appeared overnight, I showered morn & night, and I am sure i would have noticed it before! Weird description i know, but at first I thought it was bone as I had lost a bit of weight - put that down to stress - now I wonder? I hope your appointment comes in quickly and the news is good.
... View more
06-05-2014
09:51
Thanks tulamo, I think you are right. Maybe NOW I need to talk to a counsellor. I spoke to one before I started Rads, mainly because my family thought I must be keeping it all in as I was way too flippant & positive for their liking??? Lol. counsellor said I was habdling it all fine, and that was afte 2 appointments, so I never went back. My taking stock was probably delayed as I had to take care of hubby following a botched Gall Bladder op 3 weeks after I finished Rads. I more or less hit the ground running! I will talk to someone soon, need to get it all out of my head. I know what you mean about the embarrassment from sympathy givers/ It's like survivor guilt to me every time I hear of someone losing the fight now! Thanks for the wee nod x
... View more
03-05-2014
12:50
Hi, I never knew anyone with Breast Cancer before I was diagnosed, and I have not met anyone who had same treatment as me - Neo-Adjuvent. I wonder if there is anyone at the same station as me? I call it a station because I feel as though I have been on a speeding train journey. All the stations were my treatments, appointments etc. Now I'm stuck in a station waiting for the next train! From Jan 2012 until Dec 2012 I went through Chemo, Left side axillary clearance, Bilateral MX with Tissue expanders, then a repair job as one side slipped down, & Radiotherapy. I had the expanders replaced with implants Oct 2013. Then in Jan 2014 Plastc Surgeon said left side was not working out due to Rads & very thin skin. Now I am waiting for Lattisimus Dorsi on left and adjustment to right side (it's slipped again) Thus the feeling of being stuck in the station, next train not until July/August. I was great up until a few months ago. I got through all stages of treatment in good spirits & health, with only the odd meltdown. Now I am feeling so fatigued, aching all over and emotional, and just not right with myself. I worry I will not have the same fight to get through next op. I know I am a bit down, maybe it is just hitting me what I have gone through. I rarely entertained the 'what ifs' Now I am doing it retrospectively and I am having small panic/anxiety spells. I don't know where I thought I would be at this stage post diagnosis. I guess I thought it would all be behind me and I woud be fit & well. I wonder if I should bother with more surgery, will I feel any better, will the pain & discomfort get better or worse, what if this next op fails too? So many doors opening & closing in my brain! I know women who have return to work and are living full lives months after treatment and I feel like I am some kind of sham. I can barely manage 2 afternoons as a Volunteer, never mind think of returning to work! Does this all pass, am I 'normal' My iron levels are showing low saturation & GP keeps giving me Iron pills, but do not seem to help. I do not have much faith in GPs when it comes to Cancer treatment and its effects, they do not seem to know much. I am on Tamoxifen and I do not know if I am experiencing side effects from them or ALL my treatments, or am I just getting older? (57)
... View more
03-05-2014
12:13
Me too jaybee, How are things now? I've been on Tamx for 15mths and still feel as you say 'desexed' Spoke to GPs twice but they just look at me sypathetically, do bloods then nothing!
... View more
20-11-2013
11:10
Hi Bunnybear, I had immediate recom MX last year, then rads to left side only. I had no problems. Yes left side was tighter & they had to draw out some fluid after last top up, but no other concerns. Had them exchanged for implant last month, rads side not stretchy enough so I need more surgery. I could not get Tissue or Dorsi surgery as I have no fat to spare - size 8/10. I just uploaded pics of how I look now. All I will advise is painkillers. I found Gagapentin worked best for nerve damage pain - cocodamol Tramadol did not do it for me. i have no regrets re surgery. I could have opted for 1 side only as right side was non invasive, but I didn't want odd boobs or worry about it becoming invasive. Wishing you all the best & a speedy recovery...although you have to give yourself time...not that I am the most patient patient!!xx
... View more
20-11-2013
09:44
Hi Annen, I too had Tissue expanders. I have to say I was not too uncomfortable until the last 100ml (400ml total) They drew a small amount back out & it was better. If you are not comfy they can draw some out - it may mean more visits but if it works for you then so be it - Your body Your choice remember. They may have a set timetable but it has to be flexible in case of such problems. Take your time, go at your own pace. Do you have painkillers? I got Gabapentin painkillers as co codamol & trazadone do not help nerve damage pain. I just wanted to get it all behind me, but here I am 3 weeks post exchange & still sore on Rads side & needing more surgery. bionic women me...but done by instalments!! 😛 xxx
... View more
22-08-2013
10:08
I had same type of pain after Bilateral MX with Tissue expanders - 1 year ago this week.. I had a wee bit of a fight but I got GP to give me Gabapentin which is very similar to Pregabalin but is slow release & a bit stronger. It was only thing that worked for me. Tramadol, & CoCodamol 30/500 didn't touch it. I no longer take them - stopped about 4 months ago. Still get the odd stabbing pains, but they don't last.
... View more
05-05-2013
09:36
My BCN advised to paint nails with dark polish as chemo makes them light sensative. I didn't lose my nails, I even ket getting my acrylics done throughout. I think it depends on what drugs are used. I was on FEC - dropped plan for Taxotere as tumours responded quicky to FEC. Heard that Taxotere is the nasty one. Can only adivise plenty of vitamins & nail care, your nails & pretty much made up like your hair, yet we don't care for it the same?
... View more
05-05-2013
09:31
Hi Peggysue,
I still have tissue expanders in - until August, but I have chest wall pain & fat necrosis - double MX was last August. Plastics guy say its due to Rads still tightening tissue, he will sort fat necrosis at next surgery as he's a bit of a perfectionist! 🙂 - who am I to argue, never been here before. Guess time will tell.:)
... View more
14-04-2013
04:46
Hi Rieswans,
I was not really suitable for LD as I did not have enough body fat and was only a 36A/B. Not bragging or owt, I'm just a short ar**! :0 My surgeon also said it was a bigger op & I would be left with scar on back. If they are giving you the choice, then they have to tell you all the details, the pluses & minuses of each op. I can't speak for others. I had Bi-Lateral with immediate recon - tissue expanders - had to lose my nipples. That was August last year, still got expanders, had rads after so a bit tight & sore on that side, but healed great. Hope to get exchanges in next 2 months. It's unknown territory for us all when we are hit with this stuff, you barely get the chance to take in the diagnosis & you have to make these decisions. All I can advise is ask, google, research. Don't get too influenced by folks horror stories, for each negative you will find 100 positive. Avoid USA topics, remember they do things differently ...aand have to pay! The best of luck to you, I'm sure it waill all go well whatever you choose.
... View more
08-04-2013
07:42
I asked GP to check my bloods 2 weeks ago. She phoned today, my haemoglobin count is very low. she wants me to come in for an Iron level test. Now why did I not get this checked at Post treatment appointment in March? I checked my Chemo record and it is actually lower than when I was getting treatment! I would advise everyone to ask for blood test at end of treatment, we feel sh**ty enough without anemia!!
... View more
02-04-2013
09:12
Hi,
Would love to join you Gabbies, I'm in South Lanarkshire/Glasgow area. 😉
... View more
12-03-2013
06:23
Hi,
Right there with you ladies.
I finished Rads 5th December after Chemo, Bilateral with tissues expanders.
I got an appointment through EVENTUALLY for Oncology which was last week. After waiting an hour & a half I was seen by a Registrar - just fresh out of the packet! She was pleasant enough but any questions I had were ansered with 'We have given you chemo, surgery & radiation' She argued with me about the results of the post surgery pathology - they had found invasive & a tuberous cancer in the supposed to be non invasive affected breast - until she actually looked at my record on he computer. She then told me they would not need to see me for a year. I lost all confidence and gave up with the rest of my questions, and came away quite upset. For the first time since diagnosis I actually broke down. I don't know why -a combination of the unknown or the feeling of being abandoned? No advice on what to watch for, who to talk to if worried, effects of treatment etc
Anyway I phone my BC nurse, who I had not spoken to since chemo last June, and she seemed to know right away this registrars lack of 'people skills' and she gave me an appointment to see her next week. Reading here I know my fears & emotions are very common. We are intelligent people and given the right information & advice we can learn to deal with it all, but being treated like a case study instead of a human being is not on.
Broomsticklady - you are so right about bolshiness and going forward, I have been bolshi up until last wekk, but I'm getting my fight back. I've still got a lot of pain & more surgery to go through...but I will not be beaten - too much trouble to cause! 🙂
... View more
