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!
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.
Take care
Starfish x
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!!!
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?
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.
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 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.
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!!!
samjm
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.
starfish
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
binkie
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.
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.
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.
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
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, 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!
Take care
Smiler
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?
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
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.
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…
