When I was first told about my lymph nodes I got in a real panic about it, but was told we have removed all your nodes(32) and 24 infected and removed your breast with the lump. You have to say to yourself that it is gone and now to get on with your treatment.
I also have had a bone scan and CT scan, my bone scan was satisfactory, but no news on the CT scan yet. I also have to have a CT scan of my head, and a echogram done. I am due to start chemo on 23rd of this month.
Hope to be able to chat to you some more soon.
Glad I found this post, as I was about to ask a very similar question myself.
I had a left masectomy and 7 lymphs were removed, 6 out of the 7 had cancer in.
I had a bone scan and ct scan in dec before my op in jan. my oncologist is going to do another ct scan before I start chemo in march sometime.
found you again!
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.
Good luck with nurse tomorrow xx
Keep losing you - then finding you - have no idea what I'm doing on this site at the minute.Be back after dinner to try to get my head round it all.
(ps i just hope I can find you again!)
This is about the 5th time i've tried this, the whole website just changed on me, so got a bit confused.
I am going to hospital tomorrow to have some fluid drained off, and talk to the breast nurse. Then back in on Thursday for my bone scan (terrified!!!)
I am a bit older than you (53) but feel I've aged over the last few weeks.
Hope you are keeping ok
love Jan xxx
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?
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.
Love Jan xxxx
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.
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.
Take care to you all
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!
Enjoy that walk on the beach tomorrow - xx
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.
love Jan xxxx
I know you took the sleeping tablet last night - are you awake yet?
You've gone a bit quiet today - are you having a good day? shopping maybe?
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.
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
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.
Mum has been taking her temp i think.....i keep telling her to!!!!! Will check with her 2mora.
OH stands for Other Half i think?????
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.
Wishing you all well.
NED - no evidence of disease.
I had to look it up on someone elses thread!
OH - when refering to a husband - silly question but whats it stand for?
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.
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.
Will talk to you soon. Take care
love Jan xxx
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 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
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.
I had 5/9 infected but what worries me the most is that i always thought they would be infected in a ladder i.e 1 - 5 infected and the other four clear ...............wrong the top two were infected the bottom two and 1 in the middle. I also asked about the qty of lymph nodes i was told all i had was 9 nodes and the top axillia was infected.......
When you say you had 4 out of 5 infected lymph nodes, I think that means you had 4 out of the 5 that they actually took out infected - not that you only had 5 lymph nodes! I think most people have at least 20 in total if not 30. So it must mean that the rest of yours were clear.
Hi again Samjm
I am lucky my daughter is here with me & my grandkids, if I get to meet your mum I will help her sort out the new age stuff!!! My daughter is about the same age as you. Hope she is feeling better. x
Alot younger than you, just turned 16. My mum is 66 years old uses skype, email don't think she knows facebook though. Went to Turkey over 3 years ago and had to learn use computer (couldn't before hand) to keep in touch with us all cheaply. What part of Spain did you live?
Hi Jan, sorry you are having such a worrying time. Number of lymph nodes and number with cancer in is a question I think many of us worry about, me included! I had 4 out of 5 involved! Is it possible just to have 5 lymph nodes or did they just not find the others??!!! And if I did only have 5 that means I only had 1 without cancer in. However I also think well at least they did their job and trapped the cancer and like to think the bad cells didn't get passed the 5th! Don't know whether that's too naive but it helps me to think that way!
Have tried to get Mum on Skype.....absolute nitemare. I brought her a laptop for that very reason but Skype is not compatible with her sound card!!!! It can be sorted by someone who knows computers so need to get round to that!!
I am 35, married with 2 kids aged 8 & 5. We used to live in Spain but been back here for nearly two years (unfortunately) How old is your daughter?
Hi Jan. Just thought I'd very quickly give you my tuppence worth, I had 20/23 nodes involved and was 27 years old when diagnosed. Think the fact that I was misdiagnosed and it was nearly 14 months after I first found the lump before I started treatment is the reason there was so much spread to my nodes. But I'm doing good and will be 2 years since mastectomy in May. A friend I met in chemo unit had a lot of spread too (15/20) and she is also doing well two years. Hope this can give you some reassurance. Take care. x
About 5 mins from Altinkum, use skype too. My sister lives in Shanghai, we are rather spread out. Where does your son live?
Hi Lynni my son lives in Turkey and I use Skype to talk to them-my granddaughter loves it.Where is your Mum?
Sorry Jan didn't mean to end my post there. Don't worry about the lymphoedema too much, but just be aware of symptoms. Let us know when you get scan dates, hopefully your wait will not be long.
Take care hun xxx
Crying pretty normal I think. I remember going to sleep crying and waking up (when I did sleep) crying. Mind you the wine got abit of a hammer as well. Reading your post brings back those awful feelings, but you WILL get through it. The lymphoedema, i have that an all (oh the joys of cancer), if you do notice any swelling or achiness, see your bc nurse or gp and get referral to lymphoedema clinic. We won't talk about that now, we will go down that route if it happens.
Sam, never been on Facebook so don't know if its easy or complicated, hopefully you can persuade your mum to join us. My daughters called Sam too, how old are you? My mum lives in Turkey, I know how hard she finds it not being here, but webcams help.
Take care everyone
Thanks for your advice, my GP has said i can go at any time after practice to see her, it's just getting passed the receptionists that can be a pain!!!!!!!
No don't have any dates yet, was told it should be within 2-3 weeks, and have them done before I see the specialist at the chemo unit. You should try and get your mum on here, would be nice to chat to her.
Thank you for telling me about yourself. I am also HER 2 positive, my tumour in the breast was 6 cm and positive to oestrogen. Its just these lymph nodes that are worrying me more than anything, especially at the start when the doctor said he didn't think any were infected. I'm 53 but feel like i'm 93 at the moment. My GP has been very supportive. I had lots of questions to ask but my mind went completely blank, so i am taking my sister with me next time. I don't know where these tears are coming from, i must be bone dry inside.I had a mascetomy on the 7th and complete node clearance,wound is healing well, and moving around ok, just hope I don't get the Lymphadema. Will find out what treatment I will be having when I see the oncologist.Thankyou again for all your help and advice. Jan x
The sleeping tablet knocked me out for about 4 hours but woke up crying. I didn't think to ask my doc why I had so many lymph nodes. The bone scan is routine but it hasn't stopped me worrying.
I am sure my Mum would find you all a massive support and great company but it has taken me 6 months to get her onto Facebook and she just puts the computer on goes straight to it then switches it off!!!!!!
Next time I go over I will show her the site and explain it all to her.
my hubby's aunt is 62 and recently had a wle and node sampling - had to go back for node clearence and clear margins which first op didn't get - she had that last wk and we heard she got the all clear and only needs radiotherapy.....not sure of all the ins and outs of hers and how many infected etc but it sounds very good and positive x
I had 23 nodes out of 25 with cancer at primary diagnosis.
Different people have different numbers of lymph nodes...some have as few as 10 and others as many as 60!
Cancer can spread either through the lymphatic system or the vascular (blood) system. Statistically the number of nodes with cancer s one factor which gives an indication of whether cnacer will spread or recur. Medics usually use three levels of threat: 1-3 nodes, 4-9, or over 10.
With 24 nodes with cancer on paper you are at high risk of cancer returning but there are some people who have many nodes with cancer who survive and are well for years, and the reverse: people with no nodes with cancer who still get rceurrence.
In my case I went three and half years past diagnosis before getting a regional recurrence.
It is very scary to have a lot of nodes with cancer, but no one can know for sure what will happen to them. I think we each finds our own way of living with a good, not so good, bad or dire prognosis.
best wishes to you
Good advice from your GP. One of the best bits od advice i got came from my bc nurse " take little steps and one day you will look back and see how far you've come" Its been so right. Have to agree with Sam - typing is spot on or have you started on the malibu already!!!
Sam pleased to hear about your mums scans, it must be a relief to you all. Would you mum not want to join this forum?
Jan - Mum did have a bone scan and an MRI. Both came back clear which was a massive relief. Have you got dates for yours yet?
Binkie - Thanks for that, I will pass it on to Mum. I know I couldn't do much if I was there but I could give her a big hug. She is spending far too much time on her own which is affecting her emotionally, she is very down. I know that if I am on my own I mull things over & over and I have never had to deal with anything like this!!!
P.S Jan-your typing is very good!!!
Just to say I was in this position a year ago. I was eventually told I had 6 out of 21 lymph nodes affected but was given sentinel node biopsy first as they didnt think any were affected.
Once they found infected lymph nodes I had scans. I found the whole thing a nightmare and finished up on tranquillisers and sleeping tablets. Indeed on one occasion I had to take about three tranquillisers just to get me hospital to hear results from consultant. I was stoned out of my mind. The only way I could face it or not as the case may be.
Having infected lymph nodes seemed to isolate me I found. I went to a support group but no one else there had any infected lymph nodes. Small lumps and maybe only one affected node if that. I was told 25% of people have to go back and have all nodes out. When I went back in I was the only one on the ward.
So I know how you feel.
Unfortunately affected lymph nodes means extra treatment. I dont know how old you are. I was 56 at dx. I am just finishing radiotherapy. I had to have a mastectomy, node clearance, 4 FEC & 4 Taxotere, Herceptin until October this year as I am HER2 - a further shock - and Arimidex for a year, oh and 12 rads. At least if a dx is poor they give you belt and braces and you should get everything whereas it is my impression if things are borderline the standard is 6 FEC in most cases.
I too get moments when I am very scared. Saw GP at christmas. He said Happy New Year. I didnt feel it was. I am very up and down but feel at least I am here a year later. There are some on here who have a similar dx and seem to be doing well but unfortunately there are also a lot with secondaries on here which is all very worrying I find. I am not taking sleeping tablets or tranquillisers now but wouldnt hesitate to have them if things got worse. We all have to find our own way of coping with this disease. I do know many people who have had bc and seem well years later.
I found it helped me to find out as much information as I could and to be in control of the treatment I was offered. At least that way I felt I was doing everything I could for myself and have no refused any treatment. Ask lots of questions as well. Whenever you have a problem post it on here. There is always someone I find who has been there and can give you the benefit of their experience.
HI Sam Hi Jan
Sam if your mum is really bad its possible that next time they can reduce the dose.Tell her to tell them all the problems - and write them down..If you were with her theres nothing you could do - she will bounce back in a few days.Tell her to take her temperature- if shes doing that daily and its fine shes ok however if it is 38c or more she should call the hospital.Tax lowers the blood count more quickly than some other chemos hence a quicker temperature which could indicate a problem- which they can easily sort out.Then you can stop worrying.
Jan didn't you sleep last night? I can understand that if you weren't having tears you would be very unusual - did you ask why you had so many lymph nodes?Some people arrive by being born with beauty brains or wisdom but you seemed to have nicked all the lymph nodes!
Is the bone scan not just routine at your hospital? Mind you even though I was told that it didn't stop me worrying about the results for the longest 2 weeks ever - it felt like years and then I burst into tears when I did get good news (and they didn't give me any tissues!) - They wouldnt give me sleeping tablets I was told to do yoga!- never tried it never want to - but if you know how to do yoga theres an idea for you- with the malibu and coke after!
Hi Lynni, Thanks for your message, it's actually me typing this today, so please excuse any mistakes I make. Went and saw my GP today, who is lovely and went through breast cancer herself a few years ago.She was quite shocked at my results, but is always so positive She did most of the talking. me I just "blubbed" and kept using her tissue's. Told me to get one hurdle over at a time, the next being the bone scan and then see what oncology have to say.Got some sleeping tabs and she very reluctantly gave me some diazapam, but to try and get through without them if I can. Again another big thankyou to everyone whose has talked to me over the last few days.
love Jan xx
Hi samjm, it must be so hard being so far away from your Mum. I am afraid I can't answer you on the side effects as I have yet to start treatment. Waiting for a bone scan and MRI which is a real worry. Did your Mum have scans done? Been speaking to my son Dave (David) and he said it would be good to start up a thread with you and perhaps get a few others to join in. I know he could do with talking to someone in the same position as you.Mind you he tells me he isn't that young (27!!!!) a lot younger than me. I will get him to sort it soon.
love Jan xx
Sat at work, got a free period(work in a secondry school!!)...just sent my normal morning text to Mum (She lives in Spain) to find out how she is. All I got back was 'SH*T'. She had her 2nd TAX last weds. Side effects more this time....should we be expecting more each time (2 to go)?
Its sooooooo hard being so far away from her....I just want to be with her through this!!!!
Malibu and Coke sounds fine. Hi Dave.
No it was onc who advised. Just realised when read your question typed by Dave that maybe I should have explained properly. Unfortunately my cancer has spread to bones. After mastectomy I was to have chemo (belts and braces), but as cancer had spread onc went down the hormone therapy route as wants to leave chemo as an option further down the line. I don't know if I should be telling you this, would hate to worry you, but on the other hand it shows how well treatments do work - I feel really well. As has been said on other posts/threads some people have had high number of nodes infected no cancer spread others have had no nodes infected and had a cancer spread. God I hope this isn't making things worse. The waiting I found was the worst part. Even though my news wasn't so good, once i knew i could start dealing with it. I dearly hope your news is good, I'm keeping everything crossed for you, except when I need to pur myself another glass of wine, if thats ok.
Take care xxx
Have that Malibu and coke.
Stay positive. Best thing, apart from the Malibu's of course. And you'll always get a lift from calling Dave, David, depite his protestations.
Dave, Sam, why not start a thread? As you said Sam, you just need to bump it every so often. I promise I'll come in and contribute.
It might be an idea for us kids.....ok, older children to start a thread. I sometimes feel like an intruder on these threads!! Just trying to gain as much info as I can.