OMG… can’t believe it, I went to my doctor last Monday as my hand had swollen and assumed it was lymphodema, he refered me to hospital for check up.Went on the site found out ALL the info I could about lymphodema, as I am awaiting to have an assymetry op after a WLE and 2 lymph node ops in Dec 2008. Go into hospital today thinking I will be checked and come out with a sleeve and excercises, nope… ended up with a lymph node biopsy… now really worried, I have done the chemo, rads etc and was just getting my life back together again, looking forward to travelling to Bahrain in Dec to see my son, and my first grandchild will be due in March 2011… now what! Another week of worry until I get the results, I am already questioning if I am strong enough to go through the whole chemo/rads/no hair/no life again. Have decided to say nothing to my children 23 & 33 until next week, I was deffo not at the top of the list when lady luck was about. Has anoybody else had the same? whats the prognosis/treatment. Its easy for the nurses to say not to worry, its like living with a time bomb ticking over your head.
having positive nodes arent looked at in isolation in terms of prognosis… a small tumour which has a few lymph nodes and treated with chemo still has a pretty good prognosis.
also it may be that your nodes are perfectly fine and just ‘reactive’ ie reacting to the lymphoedeama and swelling rather than any cancer.
will be keeping my fingers crossed
lulu xx
Hi Highlandlady,
I can totally understand how worried you are and I hope all is well when you get it checked out. I have just finished treatment for a recurrance in several of my lymph nodes under my arm and going up to under the collar bone.It isn’t technically a secondary cancer, but I think is considered more serious than a primary. I had 6 months of chemo.this year, which only shrunk them a bit, followed by 3 weeks of super-strong rads which finished in Sept. Had a scan last week showing more or less all gone, with only a small area left(hopefully scar tissue) and some bits showing up around the same area in the lungs (hopefully temp.rads damage). So, for the time being, all seems OK. So…even if there is something, there are things which can be done to sort it out. Forgot to say at the beginning that my problem all started last Autumn (18 month after dx)with a swollen arm after digging. I went to GP, lymphodema clinic several times and even had a mammogram last Dec. and everything seemed to indicate “just” lymphodema. It was only when I saw my onc.in January that I had more investigations. So, it’s good that you’ve been seen to straight away. Keep us informed as to what they say.
All the best,
Sarah.
Hi Highland lady,
Oh I really feel sorry for you,just when you thought you could see light at the end of your tunnel,the bit when you said you didnt feel as if you could go through no hair/no life etc has made me go into a cold sweat as Im in a quandary as what steps to take next. Maybe one of you knowledgable girls will give me some advice,will try to be brief; Dx Nov 08,6 FEC,MX May 09, 15 rads, 8yrs hormone treatment. The Letrozole first followed by Tamoxifen have always made my “good” boob sore but the last 3 wks its been very sore indeed plus Ive a dull ache under the bottom left side of my ribs and my non BC armpit is tender. Obviously I should go to either my GP or my onc or surgeon BUT Ive moved to Spain. Ive been flying home every 3 months to see the onc & surgeon alternately,last visit was late September,it was a very brief consultation though,not worth the air fare in fact. So, my next scheduled visit is in January,do I wait till then or ask for my appt.to get brought forward or consult a Spanish doctor or even leave off the Tamoxifen for a couple of weeks to see if my breast stops feeling so sore,at the moment its how I remember when my PMT was at its worse in my younger days.
Any comments would be appreciated and I`ll keep my fingers crossed for you Highland Lady. Love to all you ladies, Mags xx
HI ladies, thanks for the helpful comments, Sarah68 did you have an op to remove lymph nodes? when I was first diagnosed I had the normal 2 or 3 nodes removed, they then found cancer so I had to go back for another op 1 month later where they removed anoth 20 or so (cherry picking!) and was told that none of these contained cancer. I had a mammogram in April, again clear, and the lymphodema was my only symptem, but its weird as I have been to see the PS re assymetry op and told him the breast had developed a dent, which I just assumed was a reslt of the lymphodema as this was only a few days after my swollen hand. Anyway must keep ma posative outlook and just hope and pray for a good responce next week. With regards to your question Woody24, I personally would get an appointment with either your local GP/hospital or return to UK, I was always told anything different in breast etc must be reported, do not feel you are wasting their time, best of luck, thoughts are with you, keep me posted xx
Hi Highlandlady,
No, I didn’t have an op.in response to your question. They said it was inoperable due to the location behind bone and near to major arteries. However, if there is something there in your case, that might not be the same. I had 14 nodes out in total in Dec o7/ Jan. 08 - 4 had cancer cells. Not sure about my prognosis now and don’t want to know!Let us know if you have any news - it’s so horrible waiting and almost impossible not to worry. Feel free to come on here for a moan if you like!
All the best,
Sarah.
Hi Sarah68, its just the waiting… A whole week, feels like a year. I have been off judging at a horse show today, which was good, helped me forget for a while… I decided to tell my youngest son last week when on facebook, it was easier than talking to him, I did promise after keeping the possibilities from them last time that I would let them know, but my eldest son lives in Bahrain with his wife, and thought it best not to let him know just yet. I think the hardest part for me is the chemo, hair loss regime. I can cope with the rads, I spend all of the summer months judging at horse shows all over the country, which are already booked, and I hate to let people down, luckily last time I only missed 2 shows due to treatment, and that was an infection AFTER my chemo as my groshong line was taken out… but like everybody I have soooo many plans, wishes and dreams to complete… being ill is not in the running. Will keep you informed of progress… only 3 days now x
Well it was clear… thank god… a week of worry and nightmares. Now being ref to lymphodema specialist, and looks like able to go ahead with either implant or lipofill in new year,. Just to say ladies, IF EVER… you get lymphodema… please please go and get it checked out… do not assume it will go away, it wont without the proper treatment. Yes I worried, panic set in… BUT… at the end of the day if it was back the good points are it would have been caught early, we all feel we are being a pain to doctors, BCN and other specialists, it is their job, and I am sure they would prefer us to get it checked out early and have good news, rather than hearding that dreaded C word again. Chins up everybody… lets keep up the fight xx
What fabulous news, Highland Lady sooooooo pleased for you!
Hi again, thats brilliant news that you were given, Im really pleased to hear from you, onward & upward now, you can look out of the plane window on your way to dubai with a happy heart plus the thought of your new grandchild, Gods good. He was good to me this week, I went to the Spanish GP who recommended that I got an ultra=sound plus tumour-marker blood tests(Id asked my UK onc for these and hed refused me). to cut a long story short, it took just 30hours to get all the results, I got the ultra-sound within 20mins of walking in the private hospital, the radiologist gave me the film to bring home. Blood tests at 9am following day,results at 1pm, had 4 different ones all testing for cancer of course, and all clear. All this cost me 220euros, Im sure youd have paid the same for such quick results, makes you think doesnt it? So I do hope you have a wonderful Christmas, I know I will with my granddaughters, lots of love from Mags xx
Hi Highlandlady!
Really happy for you - brilliant news!
All the best,
Sarahxx