Hello Everyone, had a rotten night even with the sleeping tablet!!------- I meant to ask my consultant if they took all the nodes out,mind you having 32 out I would think I did .Will ask breast nurse next week, as I will have to go and get fluid drained off again (3rd time) My husband works with a man whose wife was diagnosed 14 years ago, and had 29 infected nodes and grade 3 and is doing well.
My head is still all over the place, had friends come over today which was lovely, but once on my own all sorts of horrible thoughts going on, and then the tears start (again)
It’s lovely to be able to talk to you all on here, you really help my worries.
Hi Lynni he lives just outside Izmir.I go over twice a year at least.
Dear Jan I know it must be scary but I know at least 3 people who have gone 5 years + and are NED despite lots of node involvement.
Thinking of you,Love Valx
Sorry to hear that you have another sleepness night…try the Malibu & Coke again??? Its all such a shock to start with…so much to take in and process!!
Binkie - Mum is still a bit rough…she has had really bad diarrhea, feels fluey, all her bones ache and and she really weak and tired. Think that they are all normal side effects of tax aren’t they??? How you doing?
Hi sam,
Sorry to hear your Mum is not feeling so well, as you say it’s probably the side effects of the tax. Give her our best wishes and hope she feel’s better soon.
I am going to have to get used to all the abbreviations that are used on here, I did work out what "tax"was, but have no idea what NED means and several others.
Not going to bed until midnight, take my sleeping tablet and hopefully get a few hours sleep.
I’m fine thank you Sam, did your mum take her temperature? Tax has a lot of side effects but mum needs call the hospital if all those symptoms are accompanied by a temperature of 38c or more to get their advice.
I caught up with this thread tonight and just wanted to say a little about node involvement. I was mis-diagnosed by four year as my GPs refused me onward specialist investigation. They thought they were capable of diagnosing BC despite my requests for a mammogram. I was concerned about the swelling and thickening under my right armpit - BC doesn’t always show up as a lump as many of us lobular ladies now know. I eventually had two armpit lumps but still my GP refused to refer, and said they were the remains of a viral infection. At no point could I feel any adnormal breast lumps. However, it was there lurking against the back wall of my breast. When I put myself into the system at 50 I was diagnosed with localised advanced lobular breast cancer. 15 out of 19 of my lymph nodes were positive. My world fell apart. I tried to find other ladies in my area with as many lymph nodes involved and failed. I’m now nearly four years down the line and doing well. Whilst the shock of so many lymph nodes involved was very frightening I had to turn the whole situation round and think about how great my lymph glands have been in protecting me from letting the cancer spread elsewhere. In other words, they were doing a great job - mopping up all that shouldn’t be there. Whilst I know some ladies with multi lymph node involvement will go on to have secondaries, so will some who have only a small amount of lymph nodes involved or even none. I hope it is helpful to you to know that many ladies with many lymph nodes involved do survive.
I think Jeanne you’ve got the biology wrong…cancer doesn’t hop through all the lymph nodes and then hop to distant organs. It may spread to distant organs while only affecting a few, or no lymph nodes. Having a lot of nodes with cancer doesn’t mean the lymph nodes are protecting you from getting cancer elsewhere…rather it is an indication of the aggressiveness of the cancer.
Acoording to Susan Love (well known US cancer specialist) about two thirds of peoiple with lymph node involvement subsquently develop secondary breast canncer and about one third of those with no nodes involved.
Jeannie,
so pleased to hear that you are doing so well after a really c…p start and i think you will have made quite a lot of us feel better by sharing that. Very few people post about successes, which I can understand being a little superstitious myself.
Thank you and long may it last
Lily x
Hi
I had 38/40 infected when i was dx primary in july07.
I was recently dx with spread to my lymph nodes in chest and neck and partially lungs.
I think it is just as much a chance for someone with few lymph nodes as someone with higher number of nodes involved don’t beat urself up about it and enjoy ur wine adn just stay positive.
I am 36 with children ( 18,16,13 and 9 ) and even tho mine is now classed as not curable I will not give up and stay very positive as many other women on here live everyday as the best of ur life and stay focused on the present not the future and what might be.
Take care
Big hugs
Lisa x
Hi , yes I’m awake, been having a really bad day. Went out for lunch with the family and found it so hard. I find a lot of the information on here great, but the odd one frightens the life out of me. I did take a sleeping tablet about 1am this morning and it did knock me out for several hours, which was good.
Tomorrow I will try and pull myself together, and get out for a walk on the beach, sorry to be a moaner, will try and improve.
You are not a moaner ! I think you are doing well - to be on here reading-even.
I knew about this site from day 1 and was brave enough to start reading 3 days before I
finished radiotherapy! I decided I didn’t want to know anything- and I don’t regret it-It was how I chose to deal with the fact I had cancer.I can now ask a lot of questions next time I go to clinic-The answers will make sense now- they wouldn’t have done 5 months ago.
I think the problem is you haven’t even had the scans yet - you are learning about everything too quickly - and only the bad bits are sticking in your mind-have a read back of the good ones - and remember that the nodes are still in the bucket!
Thank you for starting this thread. It is good to hear of others with a lot of lymph node involvement who are doing well years later. I certainly felt very alone with my dx. Your dx sounds similar to mine. I am now on Arimidex and just about to finish radiotherapy with 3 weekly herceptin. Little side effects from radiotherapy only one week to go. I have only had to have 12 sessions of rads but 4 areas being zapped! And no boosters apparently either which a lot of people seem to have.
Hi Jeannie
I too was dx with multi focal lobular bc. Nearing the end of my treatment and onc said I will not have a mammogram for another year. A little confused about that. But mammogram are apparently not that useful for lobular. Difficult to detect. I had a mammogram only 15 months before dx which apparently was clear and then told I had 2 large tumours and HER2. My world fell apart too. I was struck dumb at meetings and couldnt think straight.
thank you for your supportive words, I do feel a little better after reading what you said. As you say the thought of the scans terrify me but I suppose everyone felt like that and had to go through them. I expect I will hear this week, at some point, when my scans are, I am also going to book an appointment to have my fluid drained and maybe talk to my BC nurse.
I didn’t manage to go for a walk on the beach as my husband has come down with ‘man-flu’. Hopefully will do it next weekend.
It is really good to hear from you Binkie, i hope we can become good friends. Do you mind if I ask how old you are?
Hi Starfish
When I first heard I had 24 nodes involved, I couldn’t find anyone who had as many or more than me. In a way it is a bit of a comfort to know that I’m not alone. How long ago were you diagnosed? Did you not have chemo?
It’s good to be able to talk to you Starfish, I hope you are doing well with your treatment, and I hope to continue talking to you.
The draining seems to go on forever doesn’t it? Then all of a sudden it just stops.
The bone scan is nothing to worry about.It doesn’t hurt- you just lie there.They played music when I had mine done I nearly fell asleep.The bit that got to me was waiting for the results of tests - I had 5 tests in total in about 2 weeks.Then didn’t get any results at all until they had them all back - by which time I was convinced there was something wrong with the 1st one!The first test was on the 12th and time stood still till 30th.Then they said we need to re-do one today!I was glad to get to chemo stage for a rest!
Jan- I reckon we need a “Man flu” site think that would make hilarious reading - seriously though I hope your husband is feeling better a bit now.