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Breast odema, just have to come to terms with it!

12 REPLIES 12
Michelle72
Member

Re: Breast odema, just have to come to terms with it!

After radiotherapy I noticed that my right breast had become swollen I thought it was just an after effect. I had a mastectomy of my right breast in Aug last year followed by lympe node clearance in Sept. I called in to see my breast care nurse last week as my breast had further swollen to double the size and I was very worried. She organised a ultra sound straight away where I was told fluid had gathered and they drained it off. They said it could come back and I'm sure it has because I feel lopsided again and I feel it uncomfortable in my bra and tshirts again. I know it's not life threatening but it does get me down. I said to my husband I feel like half a dolly parton 😂. Good luck and I hope your condition subsides.
Flossie13
Member

Re: Breast odema, just have to come to terms with it!

I have been struggling with breast lymphoedema for 5 years. I have regular hivamat massages with the Lymphoedema Nurse and last year was referred to Professor Mortimer at St George’s Hospital in London. Your Lymphoedema Nurse or breast consultant can refer you to him although there is a long wait for appointments. I am now waiting for a mastectomy as the Professor said it was the only way to get rid of the Lymphoedema. I am taking long term antibiotics for a grumbling cellulitis. Seek help from experts is my advice.

 

 

Saphire
Member

Re: Breast odema, just have to come to terms with it!

Taz, Sorry to hear you have the same problem, I hope you will get the right treatment soon. I still haven’t been to the clinic I think I will have to speak to my bcn nurse to see if its in my notes.  I now have pins and needles in the hand with lots of swelling, hopefully I will be seen soon myself, it isnt comfortable.

 

Huggs to all

 

Christine xx

 

Taz123
Member

Re: Breast odema, just have to come to terms with it!

Doh I meant 3 Nov!
Taz123
Member

Re: Breast odema, just have to come to terms with it!

I'm so relieved I'm not on my own with this! My radiotherapy finished in Feb and I started getting pain in May. Sometimes it's so bad I want to cry. My breast feels like a lump of plastic and is bigger and higher than the good one so I feel lopsided too. I feel like nobody takes me seriously, my GP and bcn are not much use at all but I see the oncologist on 3 Sep so will see what he says. Thanks for listening!
Saphire
Member

Re: Breast odema, just have to come to terms with it!

I never thought I would be joining you on here but I have just been diagnosed with left breast lymphedema. I finished radiotherapy 10 weeks ago. I didnt realise you can get it in the breast I thought the extreem swelling I have was normal so never contacted my bcn nurse I thought you only get it in the arm there is me thinking I was one of the lucky ones.

I havn’t had any treatment plan given to me yet but it looks like I will have more hospital visits

 

Hugs to all

 

Christine

GrumpyTrout
Member

Re: Breast odema, just have to come to terms with it!

I had Diep flap reconstruction in September 2015 and had a miserable time with fluid for nearly 18 months afterwards. I had support from the Ealing Hospital Lymphoedema Clinic who gave me a re-purposed 'Hereford Collar' which I just trimmed and sewed the ends of and tucked into the lower part of my bra when I got home in the evening- miraculous relief. Plastic surgeon denied existence of breast odema and was horrified- so wait a few months post-op to keep everyone happy.

I also bought some Nicola Jane Anita Safina bras recommended by my nurse which are the best I've found. Nicola Jane do another Anita bra called Valentine which is a 'flattener/binder' cut which might work as a sleeping bra for the early stages. You don't pay VAT as a cancer patient so worth going to specialist suppliers. Two years on my reconstructed breast is finally fluid free and I only have problems with it if I accidentally sleep on that side. Have a high headrest on your bed and tie a cloth to it - easier to grip in the night to keep your arm up for a while to get the fluid down and let you go back to sleep.

Kary
Member

Re: Breast odema, just have to come to terms with it!

Hi ladies I'm 2 weeks post rads,still cooking away ,with suspected breast lymphoedema,they won't do anything until rads settles down.I can't physically get a bra on just now,its painful ATM and way to swollen,i look like a bag lady with swinging udders,im due to be back at work at the end of November,i too have put on around a stone,and I'm very busty anyway,most of my tops are really tight at one side,i don't know how long I'm supposed to leave it before creating merry hell.My BC nurse said they would get me round for an ultrasound as soon as it settles,but will it,im totally fed up I look in the mirror and all I see is this giant breast,they just say wait till swelling settles,its been swollen the whole time! Glad it's not just me being a grumble,have a good day ladies.

Amero
Member

Re: Breast odema, just have to come to terms with it!

Hi Duncmarv,

I know how you feel. I went back to work in October and was still struggling with the nerve problems when I got cellulitis in my breast in December and ended up in hospital with a very swollen angry breast and since then have been struggling with breast lymphoedema. I could not believe it after everything else I had been through. I felt quite low initially and that was when I first posted on this forum. I have got my head round it now, got some decent bras, the prosthesis and had manual lymphatic drainage. I'm still lopsided but I was lucky as the mld has reduced the swelling and pain significantly. I have learnt how to do the massage myself and it certainly does move the fluid for me, but I know I will never be back to " normal". I do the massage every night and wear a compression bra in bed and it keeps things under control.

 

I am determined to get back to sport though and am getting some rehab through work in our swimming pool so hopefully it won't be long!

 

Love Amero xxx

duncmarv
Member

Re: Breast odema, just have to come to terms with it!

Many thanks for taking the time to reply I really do appreciate it.

 

It is good to know that there is options out there and I am sure I will get to that point, I am still bit angry I think.  Why was this never explained as a very likely consequence of all the treatment, instead of  seeming like a surprise to me when it happened and yet almost expected by the medics.    Psychologically I feel this could be handled better.

 

I did take one step forward however which was to have a bra fitting at John Lewis, so I know have a new size and a couple of bras that reflect that.   They do make a difference already without any prosthesis.   I also have a check up with the lymphodema specialist this Friday and I am trying to write down all the questions I would like answers to.

 

Without being able to continue with sport I know emotionally I would be in a worse place so I do hope you can get some relief from the nerve pain.   Is swimming an option with a pull buoy between your legs or does that too cause pain?

 

Thanks again and take care

 

X

Amero
Member

Re: Breast odema, just have to come to terms with it!

Hello,

 

Like you I still have both breasts, but my lymphoedema breast is bigger than my normal one. I took inserts out of an old nursing bra and put them in my good side to balance myself out, but it wasn't very effective. I thought I would just have to put up with it, but when I saw my breast care nurse the other day about something unrelated she noticed what I was trying to do and said, " We can do better than that". I now have a gel prosthesis to put in my good side and I am delighted with it. Now my necklines are straight, my bra actually fits properly and I am no longer getting chafing and soreness from my breast rubbing against against my skin due to poor support. It's a huge relief. May be not something you want to do, but it's a suggestion. It is a lot more comfortable than being lopsided and the fitter told me that if my lymphoedema increases or reduces they can change the prosthesis.

 

Like you I'm relatively young for breast cancer (42) and used to be very fit and sporty prior to the cancer. I am suffering with nerve damage in my legs so am struggling to get back to fitness. I really understand how upsetting this is for you. I was lucky. I had my son when I was younger, but had a struggle to make that happen through fertility treatment. It certainly seems as though life has been very unfair on you. How impressive though that you are getting back to full fitness.

 

Wishing you all the best.

 

Love Amero xxx

Lizzy_BCC
Member

Re: Breast odema, just have to come to terms with it!

Hi Duncmarv, 

 

I am sorry to hear you are going through this upsetting time. Our forum users are very supportive and I am sure they will be along to share their stories and support.

 

In the meantime please do contact our helpline at 0808 800 6000 who will be able to talk to you about what you have been going through and feeling and offer a friendly ear. The opening times are below. 

 

We are open:

Monday-Friday, 9am-5pm
Late opening Monday and Wednesday 5pm-7pm,
Saturday, 9am-1pm

Easter opening hours:

Thursday 24 March, open 9am-5pm
Friday 25 March - Monday 28 March
Tuesday 29 March, open 9am-5pm

 

Best wishes, 

 

Lizzy 

duncmarv
Member

Breast odema, just have to come to terms with it!

Hi,

 

It is almost one year since I had a mammoplasty to remove 3 small cancerous lumps from my left breast. I had a sentinal node biopsy and 19 rounds of radiotherapy.

I am 41, very fit and have always looked after my body. I trained for triathlon for over 10 years and more recently became a masters swimmer, swimming 4 times a week, so I can regularly be found in gym type clothing.

I found the surgery and treatment for cancer relatively easy to deal with, psychologically however I have and continue to struggle to come to terms with having had breast cancer at 40/41 and living with that for the rest of my life as well as not being able to have my own children now due to being on Tamoxifen.

Two months after my radiotherapy treatment, my left breast looked considerably swollen and I was told it was probably breast odema. I was referred to lymphodema specialist and had manual drainage regularly for 2 weeks. The manual drainage has had little effect. Today I had my annual check up and mammogram at the hospital, this is my first since my surgery and treatment.

The doctor was very nice and happy with my progress. I took the opportunity to ask about the differing size of my left breast compared to the right, ultimately asking will the breast odema get better and will I go back to a "normal" size and when would that be. He answered saying - "there are no guarantees! All I can say with any confidence is that the odema will not get worse so it will not get bigger than it is, hopefully it will reduce over time but it may not go away completely or it may not get better.

I am left feeling upset and annoyed. Today I look lopsided, the underwear I wear isn't always comfortable as the sizing is not accommodating the odema. I spend a lot of time in swim training suits which leave nothing to the imagination, I have a lot of gym clothing that is tight fighting and I feel frustrated that I cannot wear these with confidence any more.

I know it is a small thing compared to the cancer piece but it just feels like one more "bash over the head" when you've been through so much!

Has anyone else had a similar experience? Any advice?