Been to see my Onc today , for my first post Chemo checkup…and she poked and pummeled me and said yes I do have some lymphoedema in my breast and will see if she can refer me to the lymphoedema clinic, mind you she wasn’t that sure that there was one !!! But at least she was more sympathetic than the surgeon was…so hopefully something will happen…she also told me it will get worse after rads.
It has improved since I stopped taking the Xeloda tablets…so hopefully it might continue to improve…
Go for my measuring up for Rads on Friday…so will mention it again there.
Hugs,
Jill
Well said Ostrich I would like to add my thanks also. Bahons2 has helped me more than she will ever know. Truncal/breast Lymphodema is rarely talked about and everything I know about it now has come from sites Bahons2 has mentioned.
I cant offer anything else in the way of advice, but now I know orange peely skin, indentations, swelling, what I call the kniting needle pain and of cource the whiter than white nipple are all normal in Lymphodema.
I have an appointment at the local hospice to see a specialist Lymphodema nurse on the 18th and thats down to taking Bahons2 advice and pushing for answers. So thanks again Bahons2 I think you have missed your vocation in life.
Annie.
Oh, hi, everyone
I’ve been away for a bit - and we’ve had (still having, in fact) trouble with our ISP. (Last night’s post above? Oops…That was the red wine!)
I don’t know what to say :-O. I’m just glad some of the info’ I’ve got has been useful to people
I feel really, really angry every time someone with a lymphoedema problem gets fobbed off with no treatment, or the cheapest option, however inadequate or inappropriate it may be. It’s a horrible condition that can drastically affect your quality of life and which deserves to be taken seriously by the medical profession.
I first developed it in 1996 (3 years after surgery) and I was speechless at the indifference I found. I was given no warning about it at any time, had never even heard the word before. My (otherwise excellent) Surgeon didn’t give a toss and made me feel as tho’it was my fault I’d got it, anyway. BC nurse gave me a sleeve and a photocopy of some ancient exercises (think beehive hairdos)and made sure I knew it was incurable…She failed to mention, if indeed she knew, that it was treatable - and with more than just sleeves and exercises.
Ostrich - know just how you feel about hospitals - absolutely sick of the sight of them, eh?
Jill, glad to hear you have some improvement at the moment.
Louise, your routine sounds good - I do something similar. I also spray under armpits with cool (not cold) water before I get out of the shower. I read somewhere aeons ago that it helps to stimulate the remaining lymph nodes to pump a bit faster…
Where was I? I know I’ve e-mailed quite a few people some of the info’ about lymphoedema mentioned above that I have as soft copy, but if anybody reading this hasn’t had it, and would like it, feel free to pm me with your e-mail address and I’ll gladly ping it on to anyone and everyone.
X to all
S
Just got back from my Rads measuring up , where I mentioned the lymphoedma to the doc, she examined me , and said it will only get worse with the rads , and that they normally only refer people 12 months after the rads have finished !!! 12 months !!! I said I thought this was far too long to be in pain and discomfort …she didn’t seem too happy with this , but did say she would look at it again when I was done with the rads…
She also said she didn’t want me to go and have massage during the rads treatment, as this would be detrimental to the burnt skin etc…which I can understand…but 12 months before being referred seems ridiculous. I know it is not life threatening , but it is painful and distressing , when our emotions are at stretching point already .
Hugs,
Jill
Hi again,
Jill, I’ve just seen your post. I’m sorry that you can’t get any decent info from your rads team. Doesn’t exactly inspire confidence does it? Hopefully someone will come along with some advice for you.
Speaking of which….As ever Bahons, Thank you!..… I suspected what I was told was a load of rubbish.
Annoying really, as it came from a source which ought to be more reliable!
I’ve been back to that website and found another few avenues to explore. But I would also welcome anything you can pm to me via my mailbox here when you get a chance.
I’ve got a follow up appt. next Tuesday & typically, the swelling seems to have gone down a bit, which is great IF it stays that way! (So of course, they will probably think I’m a total hypochondriac !!!)
Louise, it’s great to see what advice you were given. I’m glad that you are getting help. Just told my OH that I’m not to do anymore ironing!!
All the best to everyone on this thread & a special ‘Hello’ to Ostrich, forgot to say that last time I posted!
LXXX
I had a lumpectomy and four axillary nodes removed in Feb 09. For several weeks afterwards I had a tender area on my side. At first I thought it was bruising, but eventually, when I developed cording in my arm, I realised I had cording on my chest wall. I massaged it for a couple of weeks, the pain disappeared and you can now hardly see the cord.
However, I now have tenderness again in the same area. I also find that the area seems to get a bit puffier as the day goes on. This week I (finally) went for my rads planning appointment. Within a couple of minutes of receiving the tatoo on my side, I had a prickly sensation in the affected area. Later in the day, it again felt puffy.
My question is - is this the start of lymphoedema? Any advice would be gratefully received.
Hi all
Jill, what an unhelpful response from your doctor; it sounds as tho’ you are getting a really c**p deal here. 12 months is just too long to wait for a referral for any medical condition. And that’s just for a referral - some lymphoedema clinics have waiting lists that are months long on top of that.
You are right; it IS painful and distressing. Moreover, it doesn’t (or very rarely) get better on its own and the earlier it is treated the better, too. Also, the worse it is, the more likely it is is that you could develop cellulitis (which CAN be life threatening).
I think that when you have finished rads, you need to try to insist on a faster referral; what you’ve been landed with is backdoor rationing of the worst kind.
Salopets, it does sound as tho’ you might be developing lymphoedema. If you want to pm me with your e-mail address, I can send you some info…
Lomalinda, glad to hear you are feeling a bit more comfortable, will gladly pm you all other bits and bobs, too. But I cannot send files via BCC inbox (at least, I don’t think so), so again need an e-mail address.
X to all
S
Thanks Bahons, I’ve sent you a pm.
Have just pm’ed you too, Bahons.
Thanks,
LXXX
Hi all. Jill,you describe my situation completely but when I went for my 1 yr mammogram they sent me for ultrasound to check it and said it was breast lympho. and I was referred to the lymphodema nurse who has taught me massage, exercises and is treating it with 'chip bags’ie.pouches filled with little offcuts of plastic foam which massage the area. I have also been going for taping to try to pull my ‘bad’ breast up and get the lymph moving. I have found this has helped with the orange peel skin but I still have very solid areas around the scar and she is going to try some intense massage over 2 three day sessions. I am expecting that to be quite painful but as you see I am very lucky to have such good care. The nurse says she is seeing more and more cases of breast oedema. Does anyone know why this is?
Glad to hear you are getting such helpful treatment jennym , just hope that I will find something similar when all my rads are done…
I had 11 nodes removed after my intial WE and SLN biopsy , and then had a seroma and an infection in the area around the scar of the second op , which I had to have drained . I presume the lymphoedema in that area and the rest of my breast and my shoulder , is a direct result of this…at least it is not in my arm, which is a blessing .
Hope everyone is coping OK.
Hugs, Jill
Hi everyone
Re: the rising incidence of breast/trunk lymphoedema…
… w x 3 dot stepup-speakout dot org
has very good info’ about this.
Briefly, there seems to be evidence that it is linked to sentinel nodes biopsies and the types of reconstruction now being done, which involve more damage (in addition to the sampling or clearing of lymph nodes) to the lymphatic drainage of the breast and chest.
X to you all
S
hi everyone i had lump removed in december and fifteen lymph nodes removed [4 WITH CANCER] having never worn a bra prior to op discarded bra again about one month ago and felt much more comfortable. i now however have what i think is the beginings of lyphodema to my arm. could being braless have caused this? i have always felt since one week after op that i needed fluid drained from underarm but surgeon said it would be absorbed into my body still dont feel that was right,and still feel heavy and swollen.really must ring bc nurse however always found her a little dismissive of my worries.
Have just got a letter from the Lymphoedema clinic this morning to say I have an appointment for the 30th July which is great …it will be a good month after I finish my Radiotherapy…which may keep the Radiotherapy Doc happy…will have to see what they say.
Kittyw hope you get some help from your BC nurse…
Hugs, Jill
hi all - not sure if anyone is near Wrexham at all? There is a Lymphoedema day there in June if anyone is interested - its not my local area but I have heard they have a really good team so I think I’ll go along…anyone else interested? mary x
Too far away for me Mary , but it would be good if you can report back to us , if you go.
Start my rads tomorrow so am worried about their effects on my already swollen and sore breast.
Hope everyone is OK .
Hugs, Jill
Hi Lavendersblue, had to have my say! Your case seems similar to mine.
When I started my rads on the 17th Feb (After them being posponed 3 times because of swelling)I thought they knew what the were doing (zapping allready sore, swollen burning hot skin) but when I got to day 16/25 every thing just exploded. I dont want to put you off but it took 6 weeks of daily dressings, sleepless nights and a lot of pain. Now I look back and think why? why did I let them burn allready inflamed skin?.
On a brighter note I had my first visit to Loross Hospice Lymphodema clinic and for the first time since being dx with bc I felt like a person being treated and not a condition. I cant praise sister Bev Greenslade enough. She was so thorough and really knew her stuff.
We all have to make up our own minds about things and thats were this sight comes into its own. Forewarned is forearmed.
I hope all goes well with your rads every one is different. Good Luck
Annie
Hi Annie, sory to hear you had such problems…I am keeping my fingers crossed that it will go a bit better as I only have to have 15 zaps !!
Four of my friends have died from breast cancer , one only a couple of weeks ago…so I feel I have to deal with whatever they throw at me, to try and defeat this horrid disease.
Glad that the visit to the Lymphoedema clinic has been so positive .
Helen you are practically a neighbour…
Hugs,
Jill
Hello I am sorry to hear of the problems everyone has had. Good luck to those still doing rads.
thanks to Bahons for the website, it was interesting to see that there is more breast lymhpoedema because of SNB ops. I had a SNB but my oedema did not develop until some time after rads. My Lymphoedema nurse thinks rads may have been the cause.
Anyway I am following the routine given to me and I must say it has made a hack of a difference. I wake up with lumpiness but by the time I have done my massage, exercises and moisturised with aqueous cream, it is much better and then gradually improves during the day. I still have indent marks and orange peel but at one stage the area round my nipple was so swollen and lumpy that I had no sensation in that area, and this has now come back 
Louise x
Hi there
Louise, it’s great to hear that things are now improving for you; Glad you found the site interesting. Wonderful news. You too, Annie.
I think that rads, which can damage an already compromised (by having some of its nodes removed) lymphatic system, can be the final straw as far a lymphoedema goes. it’s certainly asociated with an increased risk of it developing.
Kitty, a too-tight bra (especially one with narrow straps) can obstruct lymph flow. So I don’t think you’ll have done yourself any harm by going without one. But a good fitting one (like a sports bra) might make you feel more comfortable.
I think you should ask for a referral to your lymphoedema clinic (who can organise a compression top for you if necessary), even more so now that you are worried about your arm as well. If your bcn is so unsupportive, perhaps your GP, surgeon or onc might help? The earlier it’s tackled, the better.
X
S