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Lymphodema after third operation

16 REPLIES 16
Member

Re: Lymphodema after third operation

Hi Elinda, thanks for your message.
I had the fibriod before, it was tiny and there wasnt any issue. Ovarian cyst is new, scan showed thick lining and large cyst. The technicain said it looks harmless.
I have recently had periods and I started bleeding heavily after 2 weeks ( i got my dates wrong)
I saw the gynae couple weeks before and she took a sample. My cervical test was clean I had it this year. The gyne appt is agian on 14 August. The will do a scan again to see the progress of cyst and lining.
I have recently had a major change in my sleeping and eating pattern. I wasnt geting enough sleep (4/6 hours in 1/4 hours slots) I wasnt eating well. I eat a lot of fruit but wasnt able to cook fresh. Work and life has been very stressful.7
I am trying to change the sleeping pattern and food so I can reduce the stress. I need a holiday and a complete break from my surrounding.
I will be seeing my GP soon and will discuss this with him. He can only do a referrel.
thanks again.
Highlighted
Member

Re: Lymphodema after third operation

I'm sorry to hear about the bleeding too. The thing is that tamoxifen is potentially a life saving drug and horrible as the bleeding is (I know from my years of endometriosis) cancer is worse. Are you sure that the fibroid size and cyst are related to the tamoxifen or were you having problems before?

I think you need to get help with the bleeding too so I'd ask your GP for an urgent gynae referral. Explain to him/her that you are thinking of stopping tamoxifen and this might speed things up.

I do though think you need to speak to someone with more knowledge on all this. This is an awful lot to go through and you need some support. Please try ringing the helpline and talk to them about all of this. they can probably better advise than I can and tell you how common these sorts of problems are with tamoxifen.
Are they planning to give you chemo?

Elinda x
Member

Re: Lymphodema after third operation

Thank you very much for your messages. I am still oozing fluids from the scar. I have seen my breast surgeon twice this week. He enlarged the hole today and place a wick inside it to keep it open. This will ensure all the fluid come out quickly and the cavity can heal. He told me not to panic and as it can take time to heal after 3 operation, radiotherapy etc. He has asked me to keep my arm elevated and it has brought the swelling down.
I have had a sccan which shows one fibriod which has doubled in size. I have an ovarian cyst. I have very irregular periods. However, I am now bleeing again after extacly 3 weeks. I dont even know what to worry about, my leaking chest or the bleeind. Its 10 days earl and considering the fact that I only started getting periods in June is worrying.
I have been told tomoxifen can cause this and they can remove my ovaries ??/

When does all this stop and is there some one in my position. I am thinking of stopping Tomoxifen completely.
Member

Re: Lymphodema after third operation

Thank you very much for your messages. I am still oozing fluids from the scar. I have seen my breast surgeon twice this week. He enlarged the hole today and place a wick inside it to keep it open. This will ensure all the fluid come out quickly and the cavity can heal. He told me not to panic and as it can take time to heal after 3 operation, radiotherapy etc. He has asked me to keep my arm elevated and it has brought the swelling down.
I have had a sccan which shows one fibriod which has doubled in size. I have an ovarian cyst. I have very irregular periods. However, I am now bleeing again after extacly 3 weeks. I dont even know what to worry about, my leaking chest or the bleeind. Its 10 days earl and considering the fact that I only started getting periods in June is worrying.
I have been told tomoxifen can cause this and they can remove my ovaries ??/

When does all this stop and is there some one in my position. I am thinking of stopping Tomoxifen completely.
Member

Re: Lymphodema after third operation

Just typed out a long response and it disappeared - aaaggghhh - try again.

Hi Blueboo

It sounds like you don't have great support at your hospital at all. I'd suggest that you speak to the BCN about what's happened as she will be able to help you get a quicker appointment. In the meantime, I'd book an urgent appointment with your GP. An open wound means that there is a greater risk of infection and you don't want that. He/she may be able to help speed things up or at least get you referred to the practice nurse (or district nurse who will visit your home) and get that wound cleaned and dressed.

I am alarmed you weren't told about arm exercises. The DVD that Jo has suggested above is very good and will help. Sounds like you could do with some more support though in all ways. I don't know where you live but there are various centres that offer all sorts of help many with centres around the Uk - the Haven, Penny Brohn, Maggie centres (the most widespread) and Macmillan cancer centres which seem to vary in what they offer.
http://www.thehaven.org.uk/
http://www.pennybrohncancercare.org/
http://www.maggiescentres.co.uk/home.html
http://www.macmillan.org.uk/HowWeCanHelp/LocalInformationCentres/MacmillanInfoCentres.aspx
There are also loads of smaller charities that provide support but finding them can be tricky. I also know of the Fountain Centre (based in Guildford hospital) and the Olive Tree Cancer Support Centre in Crawley.

I did develop lymphoedema a year after surgery. but what you're describing could well be just swelling related to the surgery as it's all so recent.

take care and I do hope you've got someone around who is supporting you through all of this.
Elinda xx
Member

Re: Lymphodema after third operation

Hi blueboo, I have put for you below the links to BCC's publications on exercises aftr BC surgery, I hope you find it helpful.

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/getting-fitter-feeling-stron...

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/getting-fitter-feeling-stron...

Take care,

Jo, Moderator

Member

Re: Lymphodema after third operation

Hi All
My scar has opened up again and fluid is oozing out. Its quite a bit in the morning when I wake up. I saw my surgeon on friday and he told me everything was fine. I need to elevate my arma nd do exercises?????
He examined the scar and said it was healing fine.
The scar developed a hole and started oozing. Its clear fluid and some crusty yellow stuff like crystalized water.
Ah well gotto try and go back, its nightmare trying to get appt.
Member

Re: Lymphodema after third operation

Thank you Elinda45, Bulldogbyrne and Sam,

I did get acall from a BCN who is not my BCN however, she remembers me well and decided to check on me after I left several messages. (she is leaving soon) She tried to get me an earlier appt, however there was nothing available so I have to wait till 26th July to see my surgeon.
I also have to go through scan as I now have a ovarian cyst and my endometris is quite think. Things dont stop. I was told I dont have a clot but if I have one there are no appt and no one can treat me.
I am going to wait till 26th July and see how things go. The pain in my arm is quite bad at times.

thank you again.
Member

Re: Lymphodema after third operation

Hi bulldogbyrne

Unfortunately sometimes posts are duplicated. I have deleted the second post for you.

Best wishes Sam, BCC Facilitator

Member

Re: Lymphodema after third operation

I dont know why my post appears twice and tried to delete one but not successful
Member

Re: Lymphodema after third operation

I hiad mastectomy in 2010........ found lung cancer had op for that in 2010. Chemo in 2010...radiotherapy in 2011 and reconstruction and commenced on tamoxifen. I commenced work full time as a mental health nurse in 2012 and developed Lymphoedema in my right arm. I went to lymphoedema service and had variety of tests I now have a lymphoedema sleeve and glove since September 2012 but it does not seem much better. I got exercises to do and have to wear the sleeve and glove all day but not at night. This does reduce the swelling. I had 10 lymph nodes removed in my right side so that is why I have lymphoedema and I have swelling in the arm and hand and it feels hard on the occassions I dont wear the sleeve and glove but I have not had tingling or numbness. I have not been informed I have nerve damage.
Member

Re: Lymphodema after third operation

Hi there

Sorry to hear about your problems. A&E was fine for the emergency review but you need to speak to the specialist surgeon who did the operation - urgently. I'd suggest ringing his/her secretary, tell them the problem and ask for an urgent appointment this week (hopefully tomorrow).

Nerve damage doesn't explain why you arm and hand are swollen. What were they planning to scan for? A blood clot? You must see a specialist breast surgeon to get an expert opinion on this as a matter of urgency - this isn't something that can wait. Please don't delay and don't think twice about calling your surgeon - that's what they are there for.

take care Elinda x
Member

Re: Lymphodema after third operation

Hi all,

I went to A&E yesterday, first to St Marys waited there for 3 hours to be told by a doctor that I need to go to Charring Cross as they no longer have breast services??? There is Patterson Center next door which is one stop clinic for Breast Services however, ppl after treatment are not allowed appt there. She also said I might have cellulitist or a clot.
I self disccharge went home took a shower and went to Charring Cross which is v far from my house. I waited there for another 4 hours to be told that they have no breast doctors so I saw aVascular surgeon and a very nice junior surgeon. They offer to admit me to do a scan in the morning I refuse politely. COnclusion
I have nerve damage due to radiotherapy and its not reversibal. They can prescribe pain killers, however, they will not be able to do anything. I was never made aware of it. My scar is black but they think its fine and pain is normal. They also advice that I go see my surgeon.
My arm is still swollen and pain is quite bad at time. It is normal in color and I have almost full function. My fingers are numb and tingling.
Pls let me know if there is anyway to reducce the swelling and to reverse the nerve damage. I am quite young and am force to work full time due to financial constraint.
There must be a treatment and did they kill my nerves during the latest operation.

thanks
Member

Re: Lymphodema after third operation

Blueboo if you are in agony and swelling bad go to a&e. what colour is your hand and arm? Or phone NHS direct they will prove tell you go to a&e . Elevate arm too x
Member

Re: Lymphodema after third operation

Hi, thanks for the message. Its the weekend and I cant call anyone. Who can I call. BCN is on recording machine. I will go to my GP or A&E tomo. I am in pain and the swelling has gone up.
Member

Re: Lymphodema after third operation

Dear blueboo,

I am sorry to read about your pain and swelling. We would always advise you to contact a medical professional if you have any concerns. Would you be able to phone the team where you are being treated?

Take care

Very best wishes

Janet

BCC Moderator

Member

Lymphodema after third operation

Ok my post just dissappeared???
I had double mastectomy in nov 2013, implant replacement feb 2013 due to infection. I had another infection in left breast area and had the implant taken out in June 2013. I had the last stitches taken out yesterday. I am now implant less.

I have now developed swelling in my left hand, its painfull and scary. I did not think it will get this bad.
I have put the pressure stocking for legs on my arm and hand hoping it will bring the swelling down.
Can I go to A&E and will they be able to help me???
Any suggestions pls