Radiotherapy delay due to post-mastectomy seroma

I was diagnosed with IBC Easter week 2009 & was sent straight into FEC/Taxtotere chemo. Further diagnosed with spread to bones & lung a couple of weeks later & had mastectomy & axillary clearance on September 11th. Have had seroma ever since (drained once resulting in infection!) which delayed the start of planned radiotherapy to chest wall/collar-bone area. Today have been told that radiotherapy will be postponed until the seroma is reabsorbed “naturally” by the body.

I’m anxious because of the aggressive growth rate of IBC and the delay to mopping up any “escaped” primary cells following surgery. Any tips for encouraging a seroma to “disappear” or encouraging me not to be anxious about the delay would be very welcome!

Hi Haxted

I was DX with IBC in August 2008 and had chemo before surgery. I was told that the chemo happening first was more likely to cause seromas and in my case as well it did. My rads were delayed several times although the BNC did drain mine several times.

Since rads which finished in May I have been plagued with a swelling that I am told is a seroma and the surgeon will not allow it to be drained because he says it will just refil and I must wait for it to reabsorb. My onc thinks it will never reabsorb but due to the rads will just remain but solidify. Both the surgeon and the onc say that this is all very unusual but I am finding it very frustrating.

Feel free to pm me if I can be of any help. Where are you by the way

Andie

Hello Haxted…:smiley:

Sorry can’t really help as luckily i never got a seroma either time… (had first mx last november and second last montht…)

Have they got you on any chemo at the moment because of the spread…? But i can understand you wanting to get underway with rads… {{{hugs}}}

Theresa

Hi Haxted,

Your timings and treatment so far are virtually identical to mine. My rads are due to start on Nov 4th.

I have been lucky enough to escape seroma (so far) so I can’t help with advice about how to disperse it. I fully sympathise with your concern about the delay though. Like Theresa says, is there any other treatment they can continue while you wait? For example, will you be receiving any of the hormone treatments or Herceptin that they can give you to minimise the risk of further spread? If so, perhaps they can continue these until you can start rads.

best of luck. Jan xx

No - not on further chemo for secondaries but was put on Tamoxifen 2 weeks after surgery and am about to start bisphosphonates for bone tumours (Bondronat arm of ZICE trial). Thank you for your input! I’ll update this with what happens for the sake of anyone else who finds themselves in this position!

By the way Andie, I’m in Dorset.

Hi Haxted
I too am an IBC lady but luckily I haven’t experienced a seroma. Sorry too to hear about your spread.

Hope your rads can start asap.

Peacock

Well - I can report that the seroma dramatically reduced within 48 hours of stopping most activity. That included all the post-surgery exercises I had been doing faithfully in order that I could get my arm “up” in the position it would need to be in for radiotherapy.

Had to report status to BC nurse yesterday and they were not particularly surprised. Why they didn’t suggest up front that I do this, I don’t know! Maybe because seromas aren’t usually a huge problem to just leave except for us IBC ladies awaiting radiotherapy & there aren’t that many of us to keep this possible solution in the fore-front of their minds!

I’m to go in tomorrow (Weds) so they can see if it’s stable enough to try & fast-track me back into radiotherapy planning. And I have to remain like a couch potato until radiotherapy complete so it does not fill up again during treatment…The only exercises I can do to keep from seizing up are the shoulder-shrugs! Christmas shopping on-line then!

I’m aware, Jan B., that you start your own rads tomorrow. Good luck! And if you do experience a seroma - you know one of the things that might help now!

Hi there

Glad you’re seroma has settled. I’ve had seroma for 4 months post mastectomy for lobular cancer. I was told about resting but it didn’t make the slightest bit of difference to me.

I was told though that probably one of the main reasons was that I had had very large breasts so there was a huge cavity that fluid was trying to fill.

I still have some seroma but my radiotherapy is going ahead in 4 weeks. They don’t seem unduly worried.

take care all
Elinda x

Hi Haxted. Glad the seroma has been sorted and I hope they manage to get you back on track soon.

Thanks for the tips.

You need to sit back with coffee, cake, some good magazines and just order everybody about. Actually, if you’re anything like me you need to tie your hands behind your back to stop you doing too much.

Christmas for me this year will be gift vouchers, Amazon for the online folks and store ones for the rest. Last Christmas it was my mum going through chemo and the voucher thing worked fine then.

Jan xx

Hi Haxted
How did you go today?
Thanks for this posting - had no idea what a seroma was til I saw this and looked it up.

x

Well how odd! I posted a comment yesterday about what happened and it’s disappeared! It’s probably on some totally unrelated thread somewhere through my ineptitude, confusing all who read it!

Basically, they are happy that the rest-induced reduction in the seroma on my chest wall is stable enough & are fast-tracking me back into the radiotherapy process. Bless them, they had suspected as much and “reserved” a slot with Radiotherapy already to either confirm it or delete it yesterday.

So I start with planning next week - not sure which day yet till post arrives & will hopefully be through by Christmas.

hi all just wanted to comment on seroma and how diff doc do things diff i went for my results y day which was gd im pleased to say i had mx 3 wks ago and have got a seroma had to be drained 3 times and my doc told me y day that i can now start doing things also hoovering hes words its gd exercise for him maybe he aint doing it lol i gtg tue to see onc for radiotherapy whic h will prob not be to after xmas now tc everyone laura xx

Relief! Planning went ahead yesterday - I start Tuesday 24th - done by Christmas. Still a little bit of seroma there but apparently, should it refill or drain & go outside tolerances of existing measurements done today, they will know immediatly & will just have to send me back to be replanned. Apparently, seromas themselves are not a problem - it’s because it’s they can go up & down; they’re unstable when the measurements they take for RT need to be accurate.

This journey is teaching me loads and what I didn’t know I didn’t know (!).

Glad to hear you have got a start date - hope the seroma behaves itself…

Theresa x

Hi there

I’m in a similar position to you. I had my seroma drained (5th time now) and it’s now being left until I’ve finished radiotherapy. I’ve got planning on 18th and then radiotherapy starts 30th. They said same to me that they didn’t want it to change. I’ve had strong words with my seroma and hope it’s listened!!!

Good to know though that they will realise if it changes. I was a bit worried they might not know and blast the wrong bits!

Let’s keep everything crossed these seromas behave!
Elinda x

i also had radiotheraphy postponed due to seromas had it done now iknow how frustating this can be

Started on schedule yesterday - seroma behaving itself!

There was some confusion over whether or not they were going to use a “bolus” which is like a second skin they put on the chest to somehow concentrate the rad waves onto the skin; IBC by default involves the skin hence the inflammation. In the end it was decided to use it for the last eight sesions only (of 15) because of the inevitable burning…sounds very reassuring…

Any of you IBC ladies had this too?

i had it for the first 15 sessions… and burnt badly…:frowning: it wasn’t explained to me what the bolus was - or that i was having it before hand… to be honest when they put it on the first day i actually assumed it was there to protect my skin… lol in the end on about day 12 the rads people said we were going to have to move onto “plan b” now… plan b…??? :o and i had to see the onc… turned out she had known my skin would burn and she had been waiting for it to happen! and she had a second program for the machine to use on me taking into account no bolus… so they redid the initial scan and used the new program for the final 5 sessions… must admit though the miracle skin cream did work wonders at the end and the skin repaired incredibly quickly…
i’ve heard of several other ibc ladies on here though who had much much less burning… so i am not sure if i was just unlucky or if they kept the bolus on me too long in the end…

What might the “miracle cream” be should I need it?! Or did they prescribe it for you?

Hi

I am an IBC lady and had the bolus for the last half of my rads.Fortunately my skin held up really well and I had no real burning issue. I used E45 cream all the way through morning and night and then continued for the next few weeks.

Take Care

Andie