Just wondered if anyone can give me any advice and tips about having to go back for more surgery. I had my first surgery on 12 Jan which consisted of a lumpectomy and the sentinel node biopsy. I have been for my results today and, unfortunately, traces of the cancer have been found in the node. I now have to go back on 1st March to have all the nodes removed. I have been told this is a more serious surgery and also that drains will be used. Can anyone enlighten me as to what this all entails please. Its all so bewildering at the moment as I was just starting to feel a bit more positive after the first surgery.
Suzy
hi suzy, i had Mastectomy and sentinal node biopsy. i had 4 nodes removed and it was in 1. As i was facing more surgery in the future for breast reconstruction, i was advised not to have all the lymph nodes removed. My consultants were keen for me to have radiotherapy on all my nodes instead. This has the same outcome but is far less intrusive. You will be at high risk from lymphodema from the surgery. I have since developed mild lymphodema just with the rads. A drain isnt a big problem, just an inconvenience. It drains all the fluid away while your healing and then is removed at some point when the fluid stops building up. Have you spoke to anyone about radiotherapy as another option? might be worth doing… good luck with your decision and hope it all goes well, whatever you decide xxx
Hi Suzy, I had a WLE and node biopsy, but then had to go back for a full Mx and to have all nodes removed, 9 of my nodes (out of 24) had cancer.
To be honest the surgery was not that bad. I did have a drain, but thats just to drain away the fluid as hollymeg says - in fact i didn’t even have to stay in overnight - they let me out with the drains and then outreach nurses came to see me daily - not all NHS trusts do this though some keep you in for a few days.
Its not nice having to go back and having nore surgery but in my view get rid of the cancer and if they suggest all nodes being removed then I would. I also had radiotheropy under my armpit as well as on my chest - agin to kill off any remaining cells that may be lurking - Lymphodema is a risk and I think the stats say it can affect 1 in 3 ladies but I have had no problems so far (I had my surgery 2 years ago) - it can be a tiresome side effect of treatment but far better than the alternative… hugs to you xxxx
Thank you for your replies … I havnt had the option of radiotherapy instead of the surgery. My consultant says that will come afterwards, so there is no choice according to him. Its a catch 22 really isnt it? I cant be cured unless I do what they say so I know I will go along with it but its so very scary not knowing what will happen. Its made it a bit worse because the consultant said when I had my last surgery that he really didnt think it had spread to the lymph node. Apparantly tiny particles have shown up as I have no other symptoms not even on the MRI scan and ultrasound. Oh well onwards and upwards and at the moment I am just taking it a day at a time and trying not to go insane ha ha.
Suzy xx
Hi Suzy
Try not to worry. I only had 1 lymp node infected and they took the whole lot out. Better to be safe than sorry. You will have a small scar under your arm and feel like you are carrying a newspaper around under your arm for a while. You may also be numb under the arm and at the top of the arm. I had my surgery in July and still numb. As the other girls say the drains are for the excess fluid. I had mine done at the same time as the mx and reconstruction so I stayed in hospital for 5 days. The drains hurt a little when taken out but are more of an inconvenience than anything as you carry them around in a plastic bag. I actually forgot i had them once when going to the loo as put them down beside me and got up to walk out I soon remembered when I nearly yanked them out - ouch!!
You may have to visit hospital every week once the drains are removed if the fluid continues to build up for them to drain through a needle. It doesn’t hurt as you are numb and can’t feel it. The thought if it is worse!. I had chemo and just having rads now to blast away anything left. It will be OK - really - yes there is fear of Lymphedema which is a swellig of the arm. Just make sure you do the exercises they give you and don’t lift anything heavy or carry heavy shopping ect. You will get some details on how to try and refrain from getting this - I haven’t got it and I am determined not to get it. I don’t do very much with my right arm to put it at risk. It is a small price to pay if they get rid of the poison.
Let me know if you have any other questions - i am no expert but will try and help if I can. You will be OK and will fight this alongside the rest of us.
Love Ginge xx
Hi Suzy just out of hospital today, having had 2nd op 2 remove lymph nodes, had right mastectomy and sentinel node biopsy in Dec, have come home with a drain it’s not painful just an inconvienience as the others have said. Have started my arm exercises so hopefully won’t get lymphodema. I wasn’t given the option of radiotherapy either. I have to go back in 2 weeks where I will get my treatment plan.
Glad I found this thread as I’m at the same place right now. I had a lumpectomy and snb on 6th Jan. One margin wasn’t quite clear and cancer in 1 out of 5 nodes so am going for toal clearance and a bit more breast taken away on Wednesday. What the ladies have said about the drain is what has been said to me, and I’ll either be kept in for one night but the consultant where I am likes to get you out so I’ll have the nurse visiting to sort out the drain. I was told the risk of lymphodema is 1/10 & again best advise is get straight on with the exercies and don’t lift! I came as a huge blow to me to be told I needed further surgery, I just hope they get it all out this time and I have clear margins. I’m lucky that they haven’t mentioned mastectomy yet, but I know that will be the next option. It’s so goo d to have all the ladies here sharing there experiences, I woke up very anxious today but I’m feeling a bit more calm again now! As Gine says, we’ll all fight this together so just take one step at a time and keep posting!
By the way Suzy, no-one mentioned to me about radiotherapy and from what I’ve learnt here, the standard seems to be for full clearance if there is any trace.
Hi Sassy
Your post made me feel as if I am not on my own … I was very down yesterday and I just couldnt see any light at the end of the tunnel but reading posts on here does tend to spur me on and make me feel a bit more positive. It was nice to see someone who was at more or less the same stage as me and it will be good to update each other as to how we progress. My surgery isnt until 1st March so I will have lots of thinking time unfortunately but I will keep coming on here and taking strength from all the fabulous ladies who can cheer up even an old depressive like me ha ha.
I tried to read the thread on this link but everything is a bit of a blur at the moment. I finished 5 1/2 mths of chemo on 13th January and post chemo caught a nasty chest/blood infection and was in hospital for 8 days. On 15th Feb I’m due to have a mastectomy/complete lymph node removal and reconstruction. I’ll then have 5 weeks of rads followed by hormone treatment.
I have 2 young children and had a complete wobble last night as I’m getting nervous. Such a bliming roller coaster. Complete euphoria when chemo is finished and then you start thinking about the next big hurdle.
I have been told that I might not be able to drive for 2 mths! This will have a huge impact as I need to drive to get my kids to childcare. If anyone has any tips on what to buy and how I can help myself to have a good recovery, tips would be appreciated!
Good luck to all those going through the same. xxx
Choozysuzy,
I’m having suregery 2nd March so very close to you - having Mx and probably full ANC as SLNB showed 1/2 affected with macromets. I have made an appointment with my onc to chat everything over, what exactly the plan is and the reasoning behind it. Maybe we can “hold hands” on this one?
And twinkletwinkle the same as you. Finished chemo last week, Mx 2nd, rads start 27th March then tamox. We have a long road to travel.