I am another who had full clearance and twenty five rads (15 with bolus). Developed lymphoedema whilst having chemo but it hasnt got any worse. Finished rads week and a half ago. Its clearing up nicely and i have had no bad side effects. Elinda, i think with full node clearance there is a much greater risk of lymphoedema. They tell you one in three get it, but its usually the ones who have had the full node clearance.
I had 19/23 nodes infected with nodal spread. I think they were giving me everything to hopefully stop it recurring. As with Alice, i am still finding things out as i go along and i didnt know i had nodal spread until i read my notes whilst waiting to see doctor after last rads appointment.
All the best for your treatment.
I'm new to this but need advice. I DCSI stage 1- removed two weeks ago together with setinal lymph nodes. I was told that I would need radiotherapy. Today I had my results and I was told that the cancer had spread to one of the lymph nodes and that I would need axillary clearance and probably chemo. Has anyone else experienced this?
I thought if it had spread it can't be a satge one cancer.
I've had full node clearance + 25 rads to chest area, armpit and neck.
I had 15/20 nodes involved + a large tumour and this is why I got the extras.
I finished 8x Chemo July06, 25 rads Oct 06 and 18 herceptin June 07, had tramflap recon Dec 07, still on tamoxifen and do not have any signs of lymphoedema.
I sometimes have a stiff shoulder and a tight feeling in my tummy but I tend to carry on as normal apart from carrying bags that could cut into my circulation. I had my right side affected and I am right handed, I still ride a bike with my kids and go bowling and I do pressups, tummy and arm excersises in body conditioning classes, I just dont do the pump classes with repetitive arm weights.
My consultants and GP are happy with me carrying on as norml as possible and my GP wrote my medical letter to the gym.
I too have had radiotherapy to armpit as well despite having all lymph nodes out. Unfortunately I had already developed lymphoedema by then at the end of chemo. So it didnt make any difference regarding that risk. I had lobular cancer with evidence of spread outside lymph nodes.
Pauline - I think that either surgery or rads can lead to greater risk of lymphodema but the combination of both to even greater risk. I think it would worth asking your consultant which has greater risk or trying somewhere like the lymphodema society? I wonder why it's always us that has to search for information - it should be freely available. Maybe the helpline could assist.
Alice - I hope this all goes well for you. I've been told that mine would be to mop up any random cells although there is no evidence of spread out of lymph nodes. I'm wondering how that know that in your case - have they found cells elsewhere then?
take care all
Hi, I had mx and full clearance in April, all nodes were affected. Am starting radiotherapy to chest, above collar bone and under arm on Thursday. My onc said don't normally give radiotherapy to under arm area much these days, reason given was cancer starting to spread out of the lymphs, funny that it has taken 4 months for that information to get to me! I was told 30% chance of getting lymphodema with under arm radiotherapy, and all of this was put on consent form. Tatoo has already caused a bit of swelling so not sure what will happen after 23 zaps.
hi there, i am reading your thread with interest. coming to the end of chemo and need 5 weeks of rads. wondered if any of you could give me some advice. At DX i was told i will need to choose between full AX or Rads on lymph nodes as i had a SNB and i had 1/4 involved. I cant seem to find much information on the 2 choices i have. Already i was supprised to read from you there is a greater chance of lymphodema from rads than surgery, i thought it would have been the other way round.
Thanks Luv Pauline xxx
Elinda - reading my post again i gave the impression they warned me before hand... instead it was the opposite... at rads planning etc i was told i "may" burn and they can never tell who will and who won't... instead suddenly on day 12 they announced i would need to see the consultant as we now needed to move to plan b... plan b????
apparantly they had been waiting to see when my skin would reach a certain stage of breakdown and had a backup rad treatment which didn't use the bolus anymore but delievered the same amount of strength etc... so i had to have the planning scan again etc for them to use that rads program for days 16-20... this sounds really niave now but i had actually been thinking the bolus was there to protect my skin as no one had explained...
as you say a bit of truth would have been nice...
Thanks for the information. Noone has actually said to me that I will be at high risk of lymphodema although reading your postings it looks extremely likely as I'm due to have 25 rads. Also I've read plenty of literature that says I will be but I wish they'd be a bit more upfront about it all.
Also very worried about my shoulder. I'm having terrible back and neck pain already which isn't cancer related.
I am 3 months down the line from surgery and still have a large seroma and this can't be drained until end of October after I've finished chemo due to infection risk (I had neutropenic sepsis 6 weeks ago). I was told prior to surgery that some people developed a seroma but that it could be drained two or three times and that would be it. I had it drained 4 times prior to chemo and it's filled straight up again.
I know they don't want to paint the worse scenario all the time but a bit of realism would be good. Otherwise it comes as a nasty shock.
sorry for the rant but I'm feeling very down at the moment.
best wishes to all
Re the lymphoedema - yep they treated it and the worst bit of swelling which was above my collarbone and over the shoulder area and under arm has improved a lot. They were able to use some stuff called kinesio taping which looks like elastoplast but lifts the skin so fluid can move more freely. The frozen shoulder was partly due to the swelling so once that had improved, the physio set to work with manipulation whilst being careful not to re-aggravate the lymphoedema. I have a sleeve for swelling in my arm as well but it's not too bad all things considered. I just do a bit of massage as taught and am careful not to lift things.
The rads were ok. I too had the bolus so they could give a bigger dose and they zapped me from 3 positions. My skin did break down but it was towards the end and I got cream from the docs that was antibiotic and antiseptic. I'm allergic to aqueous cream they give you so used aloe vera instead and it was ok.
I have also had both I had chemo first, then mx and 30 rads. I was told by my onc that the risk of developing lymphodema was 1 in 10 with the surgery rising to 3 in 10 with the radiotherapy.
Elinda - my rads were very strong... i had 20 sessions and the first 15 were using a bolus - which is a jelly like cover they use to trick the rads machine so a 20% higher dose than usual is given to the skin layer... (with ibc the skin itself is also affected and my whole breast was pink when i was first diagnosed...) so i did end up burning really badly... but the magic silver cream you can use once rads finish worked amazingly well and my skin healed so quickly it was incredible... so don't let my experience put you off...
i also now have lymphoedema in my arm - but both my surgeon and onc have said it was almost inevitable given the amount of rads i was having plus full anc...
one strange benefit - it has totally destroyed the hair follicles and sweat glands in that armpit though... lol
it might be a good idea to have a chat with your bcn and see if she can put your mind at rest why they have decided on both in your case...
Thanks for the replies, that's very interesting. I was worried about problems such as lymphodema and frozen shoulder particularly as I've had shoulder problems for years.
Lizcat - do you mean they were able to treat the lymphodema?
Theresa - did you experience any problems following the radiotherapy?
Yep, I had both. I had chemo first, then mx and full anc (12/22 nodes affected) then 15 rads. Think it's an insurance policy especially as I have a small amount of spread to bones. Did develop lymphoedema and a frozen shoulder but physio and kinesio taping sorted that over a period of time - just had to be patient !
I had both and i know of several other people who have... in my case i had IBC which is a very agressive form and all the other people i know on here with it also had both... i also know of people who had positive nodes who have had both... (obviously there may also be other catorgories who do...)
I had a full axillary clearance and I am due to start radiotherapy in about 6 weeks. I understand that I will have radiotherapy to the mastectomy site, the supraclavical lymph nodes plus the armpit.
When I've looked at the NICE (National Institute for clincial excellence) guidelines it states that you should have either a full axillary clearance OR radiotherapy to the axilla. Has anyone else had both?