Anyone double mx, no reconstruction, October 2017??

[Jay68]

Hi Nuthatch, I have to still do my post-op exercises.  Sometimes when I'm walking along the street - my arm will feel tight and I just start randomly swinging it and punching the air - must look completely strange to an on-looker but I really don't care these days!!!!  Sometimes my underarm feels like I have a rugby ball under it - a bit like early post-op and another time it feels completely "normal" - whatever normal is!  Good idea on the water bottle - I do indeed struggle to get my hand round a bean tin and even more of a struggle when I try and open the damn things - my fingers have no-where near the strength they once did!

Take care and let me know once you've seen your surgeon.  

I've also got bad plantar fascillitis which was brought on by chemo - don't suppose anyone has some exercise tips for that? x

[Nuthatch]

Hi jay68
Not yet! I’ve got back to the after-operation exercises. My physio had said no need to keep doing them after about 7-8 months. But my underarm definitely feels tighter again so I’m back to doing those and will prob add light weights - like a little water bottle? Can you get your hands round a bean tin? Not sure I can! X

[Jay68]

Have you started exercising using the weights yet Nuthatch - I'm going to give it a go - I'm just going to use a can of baked beans for now to see how that goes...! x

[Jay68]

Hi Flint - I'm interested to hear how doing the exercises and weights have helped with the tightness.  Did you have any lymphs removed and if so, how did you prevent lympodema developing whilst using weights?

I've also been on herceptin which I finished mid-June - this had an affect on lethargy and muscle aching.  However, now that is behind me I'm keen to do some exercising to try and get my fitness levels back!  I'm also trying to recover from high blood pressure which was caused by the Herceptin causing heart failure.  Again now I'm off the meds I'm looking for ways to bring the blood pressure under control.

Nuthatch - I too had complete lymph removal under right arm and a right mx followed by rads - it was after the rads that the problem of tightness really occurred.  x

[Nuthatch]

Hello Flint
Thanks for your message. It’s helpful to know your timeframe for feeling less tight. I’ve frequently been told it’ll just take time - but that often feels like being fobbed off and not really investigated. Now I’ve seen images of what’s going on inside, I feel better able to accept things. And your info about weights is helpful. That’s the sort of thing that helps now, rather than waiting patiently for things to improve and then discovering about weights when I’ve left it too late! Thank you. x

[Nuthatch]

Hi jay68
Yes I will certainly let you know if/when I find out anything else.
Re lymph drainage issues, yes I have probs with my left arm. I had full node clearance and then also radiotherapy across my underarm. That seems to have messed with my lymph drainage there and I have slight lymphoedema and do drainage massage daily.
Let me know how you get on. x

[Flint]

Hi Nuthatch

I had a single mx and it took something like two years for the tightness to go. I have a part numb area over the scar.

I carried on with the excercises and use weights. If I do not do them for a while then I feel tighness and shoulder  problems building up . I've made this an incentive to do these and other exercises rather than seeing it as a negative thing.

I'm sure you will find things do improve as time passes and then suddenly you wiill not  be aware of your chest. .I certainly needed a pillow between my arm and chest in bed for over a year and.it was ages after that before I could lie on that side without getting pain in my shoulder - but I can  now!

.Best wishes for your recovery.

[Jay68]

Hi Nuthatch - yes this sounds very similar for me.  I can actually feel some of the seromas you talk of.  I can gently massage some of them and it helps to eleviate some of the tightness.  I was warned there was a high possibility of this happening with the rads but I hadn't appreciated how it would actually feel.

I also feel pockets near to where the drains were located - so I guess there is scar tissue there too.

When I went for a blood test at the beginning of the week - the nurse had trouble getting blood out of the vein - she had to abandon the first attempt and went in further up the vein and the blood flowed fine.  She said I've lots of scar tissue in the lower part of the arm - which probably due to chemo - I guess my body generates a lot of scar tissue!

It must have been really reassuring to see the image and for your GP to discuss the situation in detail - and thank you for sharing as it sounds identical to my situation.  It will now be interesting to hear what your surgeon says.  Keep me informed and I'll let you know if I find out anything in the meantime. 

Do you feel you get any other lymph drainage problems elsewhere on the body since the op/treatment? x

[Nuthatch]

Hi Jay68

Havent seen the surgeon yet - still on her hols. But I have found out something through talking to my GP today. What's making my chest tight is 'loculated' seromas - tiny bubbles of lymph that are trapped within hardened scar tissue (from radiotherapy) and so can't escape but are filling up my chest and making it feel tight. I saw it on an ultrasound image - it all makes sense now! Treating it is another matter though. I can have each tiny seroma aspirated – but there are dozens of them and so the infection risk of that many needle punctures isn't great. Each seroma may only be 2-3mls. And even if they were aspirated, the hardened walls might not collapse so I might have empty bubbles!

So, I will discuss it with the surgeon in due course. Maybe I can have the whole solid block removed! The GP's other suggestion was to have a local anaesthetic every couple of months to numb the whole area, so I wouldn't feel the tightness at all.

Anyway, progress at last. Does this sound like what you're experiencing? Feel better about it having seen the image of what it actually looks like inside. Not quite sure where to go from here, but at least someone has explained what's going on. x

[Jay68]

Hello! Thanks for the update! I look forward to hearing what your surgeon says. I don't know about you but the tightness isn't all the time - it's always worse when I'm tired and if I've been overdoing excercise or indeed not enough exercise!! The scar does feel "solid" all the time though. Please do keep in touch x

[Nuthatch]

Hello again. Reporting back on the latest developments, such as they are! I had a meeting yesterday with the physiotherapist and the lymphoedema specialist - both together - in the hope of making some progress. They have advised that I should ask for a meeting with my original surgeon to see if she can shed any light on my hard tight chest! So I’ve emailed her and am waiting to see what she says. I’ll keep you posted, in case it’s anything that might help you too.
I’m not keen on any reconstruction - but if it might lessen the clamped feeling, I would consider it. I thought it would keep things simple if I just had the double mx, but that doesn’t seem to have worked!
Anyway, I’ll keep in touch. x

[Jay68]

I had chemo first, herceptiin injections (which continued until June this year) surgery in September - mx and complete lymph removal followed by rads (Nov/Dec).  

The description you give of your chest is exactly the same as it is for me!  It is also solid to touch.  Again, the rads definitely made it all worse.  I'm told it's scar tissue - you can gently massage the area - which I do every morning with a good moisturiser - and I've been told it will eventually improve.  Not sure if that is the case or whether you just get used to it....!!

I'm unsure of having any recon - I'm happy to remain with the prosthetic but just sometimes I wonder if it would be nice not to have to go through the "dressing myself" stage every morning!  Yes I was told no recon for at least a year following rads (in particular).

Still I guess the chest feeling is a small price to pay as indeed you probably feel although it's always heartening to hear someone else is feeling just the same as you - so thank you for your post Nuthatch - I'm always looking for reassurance that the way I feel is "normal".....  whatever that may be!! xx

[Nuthatch]

Hello! Good to hear from you.

My mx was in October, with radiotherapy in January. Whenever I ask about my chest feeling as if it’s clamped in a straightjacket, I’m told it’s early days and it’ll get better. Radiotherapy definitely made it worse. It feels rock solid to touch. Is that anything like yours?

Had no plans for reconstruction but if that’s a possible way to release the constant grip, maybe I should! Do you have to wait until now because of the chemo?

X

[Jay68]

Hi Nuthatch, I remember your name from last year!

I was on the May 2017 Chemo group and was dipping in and out of others whilst going through the different parts of the "Journey".

I had a single mx without recon last September and I can quite clearly agree that part of my chest feels nothing like "normal"!  I also had radio in that area too and I'm sure with all the treatments my chest will never feel the same again!

Are you considering having any recon?  I've an appointment to see my breast surgeon next March - it will be about this time that I can be considered for recon.  xx

[Nuthatch]

Hello

I was wondering if there was anyone else out there who had a double mastectomy without reconstruction last autumn? If there is, would you share what your chest feels like now? I have queries about mine and I'm always told it'll take time to feel normal. It's 10 months now and I'm wondering if this is as normal as it will get. I'd love to hear from anyone in the same situation as me, to compare notes. x