Am I paraniod but I had a mastectomy 10th March with axillary clearance which came back clear.I had a 2cm grade 2 tumor and my surgeon suggested chemo and drug therapy. Onc says no to chemo.It would ony offer an extra 2%. My mum had breast cancer which returned 15 years later and she died. I am now worrying that without the chemo it will return like my mum. My Bcn says I can have a meeting with Onc but would this be just to explain why not or could I change his mind. I want to have everything I possibly can to ensure a good outcome. Am I being stupid. I would value very much your opinions.
Sue
Hi suesad
I do understand where you are coming from. You are not being paranoid and have a perfectly justifiable concern.
I did have chemo as I had a grade 3; 16 out 20 nodes affected plus spread into surrounding tissues so my ONC was pretty insistant. It was not a pleasant experience - doable but not something I would go through by choice it did floor me for 7months and that is not counting the recovery time after.
.
Really you need to jot down your concerns before you go and if possible have someone with you for moral support. Listen carefully to the ONC then put your own case. With percentages I look at it like this - if you replicated yourself 100 times and each clone had your BC and the same treatment then the chemo would mean another 2 would live. How significant this is depends on your prognosis without chemo. Chemo also carries a number of risks - so they may outweigh the advantages.
If you then feel you really want chemo and the ONC refuses I understand that you are within your rights to seek a second opinion.
As a final thought you could phone the helpline staff at BCC and discuss this with them - they are very knowledgable and helpful.
Good luck with your treatment whatever you choose - Swanie
Thanks for that Swanie, as its Easter they are not open today, may try tomorrow, just feel I need everything thrown at me.
Thanks, Sue
Hi Sue
As Swanie has mentioned the helpline is there to support you so please feel free to call. Everyone working on the helpline either has experience of breast cancer, or is a breast care nurse, and has an excellent knowledge of breast cancer issues. The helpline team come from a variety of backgrounds and callers get to talk to someone who has an understanding of the issues they are facing. They are also able to talk about both practical and emotional issues surrounding breast cancer.
I hope you find this helpful.
Kind regards
Sam
BCC Facilitator
Hi Sue
your posting took me back to 2005. I had a lumpectomy and SNB nodes clear but had to have a mastectomy. Originaly i was not to have chemo, I wanted it all, double mastectomy and chemo.
Things were decided for me though as although my nodes were clear the breast lump was bigger than they thought and given my age just 44 and pre-meno they decided on chemo. I dont know if your BC unit is the same as ours but apparently they put our sats into a machine and it gives them the best treatment plan for us.
I still cant remember all the % if i have chemo if i take tamoxifen as hubby got all that i just sat devastated by it all and felt terrified.
It is difficult i have always found to know what to demand and what to trust them with. In a way i like to be in control and to know what i want and what would be the best for me yet i do not have the knowledge the professionals have and i have to trust them.
Maybe a little chat with BCC would be of help to you.
You are NOT your mum hun. My mum died of BC 18months before i was DX. I always think and compare myself to mum but she was so different in age Dx and treatment. Things have improved since your mum was DX 15yrs ago. the staff are far more knowledgable.
Chemo was doable but tough and if you dont need it dont have it.
None of us know if it will return even us chemo lot.
Let us know how you get on
Hug 4 U
Rx
Thanks Liverbird, maybe I think I have the same fate as mum. Chemo would only offer me 2% extra but am prepared to have it if only for 2%.
Thanks, Sue
Hi Sue
I had to choose whether I had chemo or not as I was “borderline” (lump 2.1cm and no lymph node involvement). Not sure what it added to my percentage but I think it may have been 4%. I decided to have it as, like you, I wanted to think I had done everything possible to prevent the cancer coming back. I did very badly on chemo and was admitted to hospital three times. The worst thing was that the chemo gave me a pulmonary embolism, from which I could have died. Knowing what I do now, I’m not sure that I would make the same decision again. I try to look on the bright side by thinking that because I had the pulmonary embolism I was put on Arimidex rather than Tamoxifen, and this has, I believe, a slightly better outcome. But also, having had one pulmonary embolism, I am now more at risk of having another, which worries me when I go travelling and affects my travel insurance etc.
I also read of some research that said most people would opt for chemo even if it only offered them a 1% better chance. You just need to be aware of all the possible side-effects and weigh it all up.
All the best
Gwyn
Thanks Gwyn, until you have had chemo I suppose you dont reaslise what it does to you and the complications it can bring. I think i will settle for drug therapy. Godd luck to you Gwyn and God Bless.
Sue x
After much deliberation and a discussion with my husband I have rung my BCN and she is going to arrange an appointment with onc to see if he will agree to it. I keep thinking what if it comes back and I didnt go for it, I would never forgive myself. Mum died 1 year after getting secondry 14 years after 1st BC. Will post how I get on.
Lots of love to everyone, Sue
Hi Sue
It is hard to decide. I was not given the choice of chemo although the results suggested that it would add 3% to survival rate! It seems to vary but as Gwyne says there are risks whatever we chose. It is not easy. Good luck with your appointment. All the best Alice
Hi Sue - I also had a 2 cm grade and stage 2 invasive ductal tumour, but unfortunately had spread to the lymph nodes (4/18 +). It was a big shock after the total axillary removal to hear I was strongly advised to have chemo, as I was initially told I would only have a WLE and sample node removal, with rads. I guess because of the lymph node involvement, chemo was deemed to be the best course. I think my Onc told me I would have a 4% better chance of non recurrence with chemo, which I did have. I vaguely remember the Onc telling me that at my hospital (a centre of breast care excellence) all tumours 2 cm and over are treated with chemo, but I can’t recollect if this is only for lymph node involvement. You might ask your Onc if this is the reason he has not advised chemo.
I was very confused at the time about chemo and rads - knew zilch about bc then, but was told that the chemo is to zap any microscopic cells that can’t be seen on scans that may have travelled to distant organs, and the rads is to mop up any remaining cancer cells in the affected breast. It then made sense!
Hope your Onc explains your individual case to your satisfaction. If not, ask to be referred to another Onc. I changed Oncs after 2nd consultation as he was very arrogant and patronising, besides making me cry, which really embarrassed my husband. There was no fuss, no questions asked, they just found me another one within 15 minutes (delightful young female GP who worked one day a week in the Oncology dept). In retrospect, he was probably a good Onc but I had Crohn’s problems concurrently and he would not address them, and the gastro said he couldn’t intervene. We are all entitled to a second opinion.
Take care,
Liz.
Hello Sue. I had to decide whether to have chemo or not. The onc said it would give me about 4% more chance of non-recurrence. I was offered it because I had 2 positive nodes.
I had the chemo and while it wasn’t a pleasant experience it was - as we say here - ‘doable’. I decided to have all the treament I was offered so that I would know I had done everything possible to prevent the cancer coming back.
Good luck with your appointment.
Anthi x
Hi, phone call back from BCN saying an appointment was already arranged for 8th April with onc but hasnt come through post yet. Will post again with what he says. Thanks to everyone who replied, have a good day.
Sue
Hi, just an update from onc, he has agreed to it and I am going on hte TACT2 trial. Go to see him tomorrow at Christies and will find out more.
Night God Bless everyone.
Sue
Sue
So pleased your onc listened to you and has put you on the trial! Let us know how you get on.
Love
Gwyn
Sue I have read all your posts and just wanted to let you know that I am thinking of you - let us all know how it goes on the trial.
I was DX with BC in Nov 06 , had a mastectomy and rads - did not have chemo as they said it would only add 1%. I felt glad in one way but apprehensive in another thinking I should have it. I really understand how you were feeling.
Have been put on Arm4 of the trial to start next Thursday. Just looking at the tips for chemo and writing a list. Any help will be much appreciated. Feel more relaxed now I am giving it everything.
Have a good day everyone.
Sue x
Hi Sue, I had a mastectomy in March last year (3.7cms and grade 3) and went onto the Tact 2 arm 4. I got tired with the Epi and had a bit of a backache with the Neulasta injections but it did help as I was able to have the Epi every 2 weeks with no problems as my bloods were OK.
Capecitabine was easy being tablets and my hair started to grow back half way through the 4 cycles.
Remember to cream your feet really well while you are on the Capecitabine as one of the side effects can be dry and sore feet. And ask for a good mouthwash in case your mouth becomes sore.
Im just had my 1 year after diagnosis mammogram and have just been told things are going OK . Im now on Arimadex as I was hormone positive.
I`ll be thinking of you and keeping you in prayers.
best wishes
Margaret