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parky
Member
since
03-10-2013
74
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4
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09-01-2021
07:53
2 Hugs
Hi Elaine, most people seem to have a drain when they have a mastectomy whether or not they have lymph node surgery or implant reconstruction as well. At my hospital, they sometimes have drain bags available and sometimes not. I took two of those thin cotton tote/shopping bags with me in op day and used them until I got some smaller drain bags. If you know anyone who's handy sewing Google 'mastectomy drain bag pattern'. Cancer Support Yorkshire have a free one which is simple and good. Hope that helps
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08-01-2021
07:52
2 Hugs
Hi, I'm so sorry to hear that you've had surgery cancelled due to Covid. Although my situation is a lot different to yours, I'd love to help if I can. Body image can be difficult for so many of us, even before breast surgery. 7 years ago I had a mastectomy with immediate reconstruction with implant as I felt that I was unable to deal with going flat. This month I had a mastectomy on the other side and my implant removed. Unlike you, I made the choice to go flat on both sides, but like you, I was scared of how I would react to the sight and feel of it. It is clearly early days for me, but one of the things that I did a fortnight ago was to look at lots of photos of women that were flat on one or both sides both with and without clothes. I used Pinterest to save the images so that I could revisit them alone or with others. I couldn't look at some of them at first, but some I liked more and saved in a separate folder. Many of the images are of women who radiate confidence, happiness or downright defiance. When I first looked at them I was shocked and even put off and so was my partner. I guess that this is a natural reaction and we never see images of woman who've had mastectomies in our day to day lives. But just revisiting them over a few days desensitised me and normalised them. The number and range of photos that I could look at comfortably increased. So that when I looked down and saw my flat chest after surgery I was prepared and actually felt positive. I'm under no illusions that I will feel great every day, but I take comfort from the fact that I am amongst the company of some remarkable women, who by putting their photos out there have helped me. Even if you are only flat for a short while until you undergo more surgery, it might be really helpful to look at some positive 'flat' images. I can try to send you a link to my Pinterest board if you would like and if you think that it would save you some time looking for photos. I have some other things that might be of help too.
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04-08-2014
11:27
Hi Ali - did you have a lymph node transplant or LVA supermicrosurgery (where tiny lymph vessels are connected to tiny venules to bypass the blockage)?
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04-08-2014
11:22
I forgot to add that like you, I have been categorised as only having 'mild' lymphoedema as the swelling is currently less than 20%, but the surgeon was shocked at how damaged my lymphatic system actually is.
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04-08-2014
11:18
Hiya miniegg. I recently went to Belgium to have a lymphoscintigraphy and ICG fluoroscopy imaging to see what the state of my lymphatic system is. Even though it has been less than a year since I have had a a SLNB and was later diagnosed with lymphoedema, the results were not good. Only one lymph vessel was seen in my bad arm. The surgeon still thinks that microsurgery would benefit me though.
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03-07-2014
08:26
Thank-you Gilly. Unfortunately, I can't find it...Is it in the Lymphoedemaha section? What's the title? Cheers
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01-07-2014
02:22
A very intelligent and interesting article. It has articulated some thoughts that I've had already as well as raising others. The comments at the bottom of the article are worth reading too. Thanks for posting.
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27-06-2014
08:10
Thanks Freda. I was really worried at the time but of course the worry about cancer that was the largest. If people have ANY lymph nodes removed there is a risk of lymphoedema, but there is higher risk, the more nodes they remove. So now that I have lymphoedema I can't help but look back and wonder why they went ahead with my lymph node biopsy without one of the vital elements...The clock can't be turned back, but I'm not happy...
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25-06-2014
08:24
No. I think (hope) I'm ok...it's just that he took more than I thought. It makes me wonder if he took more than usual because they were harder to locate with the blue dye on its own...
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25-06-2014
06:56
Thanks Mary ...didn't even think about the cancer implications. ..durrr....
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25-06-2014
04:23
Hello all. I had a mastectomy and immediate reconstruction with SNLB 8 months ago. On the morning of my op I was very worried because I hadn't had my radioisotope injected so I kept asking and asking anyone that I could...Noone knew when I'd have it. In the end my surgeon said that the supplies hadn't arrived, but tried to reassure me that they could still pinpoint my sentinel node using blue dye alone. I was very distressed but had it done. When I woke up they had taken 4 nodes and had also put a different implant in to the one they said they would when I signed my consent. I developed cording and then a seroma under my axillary scar and finally lymphoedema. I have looked up NICE guidelines and they recommend dual technique for SNLB (blue dye AND radioisotope for accuracy). Can anyone give me advice on what to do?
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03-06-2014
11:21
I'm on tamoxifen and I've had loads of foot cramps recently! Also unexplained bruises on my thigh.
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22-05-2014
09:32
Thankyou littlemrs - I've got a referral to specialist centre in a few weeks time. Seems like a long way off tho'! Am wearing the sleeve and glove every day, doing post op exercises and looking after my skin. Swelling isn't going down at all tho' In the meantime is there anything else that I could be doing?My man says to try a MLD session - but as far as I can tell it's very expensive, you don't just have one session and the jury's out to whether it works in reducing swelling or not. Any thoughts?
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06-05-2014
11:35
I think that you're going in for your op today Lottie. Hope that it goes fantastically! x
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27-04-2014
10:56
Hello again I've got sooo many questions going around my head! Was wondering if any of you with more experience of lymphoedema can help comment or answer? I was (previously) a very active (running, martial arts, gardening, teacher mother of 3 primary school aged children) and I now have lymphoedema in my dominant hand and arm. I think that it is around 12 percent bigger than the other side. It is pitting, gets slightly better overnight and there are no skin changes. I have been given a mediven sleeve and glove to wear. I'm under the care of my bc nurse at hospital. I am wanting to keep doing as much as I previously did for as long as humanly possible. So wanting to get best possible care during these early stages! 1. Is it likely that the sleeve/glove combo will reduce my swelling or is it only there to stop it swelling more? 2. Is this the only/best treatment for me ? 3. Should I ask to be referred to the separate specialist lymphoedema clinic in my city? I have many more questions but these are some of my biggest ones at the moment! Any ideas or further advice? Big thanks!
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