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Recovery from mastectomy

47 REPLIES 47
josekadams
Member

Re: Recovery from mastectomy

Thank you For more information

josekadams
Member

Re: Recovery from mastectomy

Thank you All

delly
Member

Re: Recovery from mastectomy

Hi Ladies

Oh Dear to you both, ref infection, infection, infection. (D'you like that play on location loc. . . . .never mind, it's my droll sense of humour)

NMT_1 - how long do you have to have the expander in ?? I'm presuming that you can't have "inflations" if you're having them, until your infections cleared. Difficult matching a recon up to a natural. One of the FEW consolations with me having come from NONE. Hope your infection clears up soon. Mess your body up antibiotics, shesh us women.

Dawn - yeh, you're expecting too much to RECEIVE a phone call. To be honest, they're there to do a job so make USE of them. If your talking miles away and an inconvenience to get to hosp, that's another matter, but yeh, make a pleasant nuisance of yourself. What were you wanting to ask them ?, were you concerned about your wounds, shape of your tum ??

Yeh I agree with you, I'm always keen and interested to know about ANY woman and ANY boob op.

Haven't got back to my surgeon yet - but will do. I'm conscious it's THAT time of year when everything stops for a month anyway, but you given a jolt to my memory to give him a ring, 'cos it'd be good to be in the book and work towards. I'm also toying with whether to have another "inflation" appointment to what I'm already at. Apparently, they size the implant slightly LESS than the expander size, so you already have a "DRAPE", rather than a "stuck on" TIGHT appearance.

I also had damage to the skin 2" below the bra band area, due to "HEAVY handedness" by the registrar/trainee surgeon who was working with the surgeon I was under. Loads of broken veins. You only have to press too hard on my skin and the capillaries rupture, just an inherant "deli"cateness. I had the sense to warn the surgeon that my skin was great at healing but not STRETCHING, but didn't think I'd need to warn about pressure.  I can go have diathermy or sclerotherapy at a specialist beauty place, BUT at a cost. Was pretty peed off when I was told I'd had TWO of them working on me, cos I was literally red raw down both sides to my hips - BRIGHT RED. Took me 3 days to be able to get in/out of bed without being in a load of pain. I'm on my own at home, so no way would I have coped if I'd gone home after the supposed 2 days !! If I'm struggling in hosp how was I expected to cope on my own at home. Kept telling them this - idiots and insisted I wasn't going ANYwhere until I was comfortable with moving. Was in 5 days !! AND  sent home totally BUNGED UP !! despite me asking for prophylactic laxa-bloody-tives !!

Eeeeeeee, I don't know.  Had my rant/moan.

Keep in touch both. BTW. are you both back at work yet ?? or is it too early yet? Guess it also depends on what you do, whether it's physical, using your arms for lifting or such.

Loadsa Love Dellywoowoo xx 

 

Keep in touch. Good to hear how you're doing. 

NMT_1
Member

Re: Recovery from mastectomy

Hi all, Hope you are recovering well, my underarm pain is still there but getting better slowly, I've had an infection in my implant that I'm now in my third week of strong antibiotics. My surgeon has said I can't have my radiotherapy until it clears up, the infection seems to be getting worse again, but I'm trying not to panic! X
doubledd34
Member

Re: Recovery from mastectomy

Hi Delly, I am now week 3 and i did get an infection in part of the diep flap wound from week 1. I have been changing the dressings twice a week thankfully it is better and there was no need for antibiotics. I believe my aftercare has not been coordinated properly because I had 3 things done at once - removal of Dcis and lymph nodes, skin sparing reconstruction of breast by diep flap and 'tummy tuck'. So I am under plastic surgeons for the recon and breast surgeons for the dcis. Even the hospital didn't know which ward I should be in after the ops and I ended up in a general ward like hobby city! I do have numbers for 2 breast care nurses but it is left up to me to contact them should I have a question, surely they should contact me in the first instance to see how I am?  Or am I expecting too much?? I'm not the type to pick up the phone I prefer emails or face to face. (Btw I have sent an email still waiting for a response day 5....). my first appointment with plastics is next week which will be 4 weeks post surgery. As I write this now my breast is still swollen my abdomen looks out of shape perhaps due to swelling so will see what they say ( my dressings nurse says everything seems ok and any major complications would have surfaced by now, just the infection then...).

Although I haven't come across anyone who has had exactly the same as me it's still good to read the various posts and experiences of you ladies,  I will keep reading and wish you all the best in your various treatments.

Dawn 

delly
Member

Re: Recovery from mastectomy

Thanks Cate.  There was a really interesting prog on about 5-6 yrs ago about a woman  who like yourself had the strong  familial BC gene and opted for prophylactic surgery. She was only about 25 !! Brilliant job surgeon based up here in Manchester.  She opted for a slightly larger pair - guess that was some, albeit small consolation !! Good for you. Hope it gives you the peace of mind

XX

 

Cate M
Member

Re: Recovery from mastectomy

Delly - I'm 45 now and have been undergoing surveillance for the past 7 years, that's 7 years of recalls following mammograms, biopsies, scans and prods and probes. I have an extensive family history of BC on my Mothers side, no-one has reached the age of 46 years old without being affected, thats mother, grandmother and aunts. I also have very dense tissue and extensive microcalifications. Mastectomy seemed like my only choice. My thought is that, I was going to need to have a mastectomy eventually so might as well do it when I'm fit and healthy. 

 

I had reconstruction with Mentor implants and Strattice mesh sling. I'm told that the mesh sling will eventually soften and become part of my own tissue but at the moment I can feel its postion. I agree its amazing what surgeons can do now and I'm lucky I had an excellent one.

 

So heres hoping you can see that final recon hurdle and smash it to pieces. Smiley Very Happy

 

 

 

delly
Member

Re: Recovery from mastectomy

Hi everyone.

Windchime - my apols. I hadn't picked up on your initial thread that self tissue was a No No due to risks.

I've been away a couple of days so having a catch up. Have you you still decided to go for it ? - immediate recon as well ?? 

I was in 5 days for both my masts without recon, but that was 9 years ago Was same as you, 46, then. Both drains were out after 3 days.  How long are you likely to be in with it being recon as well ?? and presumably the drains may be in longer. 

I don't like all this 1 day in biz then home with drains. I don't think people are receiving the standard of care they need after such an op.  Plus if you have any probs, you don't have the medical staff/nurses to hand. All a bit DIY sounding to me.  So I'm hoping you're staying in a few days.

On top of Cate's really useful help and advice - EXERCISES! - majorly important to do as often as possible, be strict with yourself. The more often you do them, the quicker you'll get back to your normal upper body mobility and life. Physio's came round to us on day 3 to show/run through them and a leaflet with them all on a to refer to. We started them from that day. Did mine every 2-3 hours with a couple of other ladies to encourage and have a giggle same time.  You got someone to help you out at home ? fam/friends ? x

 

Cate - How goes it ? Your surgery sounded fantastic - never ceases to amaze me what these surgeons can do. Different kettle of fish when no BC. I agree - that was a brave, tough decision   At what age with you? These "anatomical" shaped silicons make a difference shape much more natural than the 1/2 sphere's stuck on look ! Did they use tissue matrix/mesh/Stratis with it also x

 

I embarked on recon last year. It's a long process from the delayed position (1-1 1/2 yrs expanders to nipple tatoos), as said, has taken 9 years to be in the position to because of other major life changes, trauma's and bereavements, hence me advising better to get done in one go. Plus it's had a devastating effect on my confidence due to being single, haven't had a partner since 2nd mast and really miss having a partner. Am part way through, all expansions done ready for silicon replacement op last September, but surgeon Xc and I then lost momentum as I was struggling with grief and  depression etc., so haven't got back onto the recon horse yet. But, am working up to again now I feel I've turned a bit of a mental corner. . hoping to maintain it 

 

How's you Riverside? Did you need rads as well. How's the chemo going? Sounds a long slog for people. I didn't need either with both. x

Doubledd - You're around 2 wks on from mast. We're all diff ref healing. Yeh, like you, I was up about back to gentle rambling after 2 wks. But I hadn't had immediate recon surgery as well as. , Were you not visited by the physios whilst you were in either ?? To run through your exercises, how to do + give you a leaflet with them on ?? You should NOT have been left to find them out yourself. It's a huge part of the persons rehabilitation, shoulder and arm mobility and strength wise,  to get you back to norm asap. As long your scars fully healed with no sign of infection - just do what your body allows without pain. You may be a fast healer. Also, were you not given no's for breast care nurses for if you had any ??'s or wanted some advice. They're the people to tell you what to expect and what to or not to do. I would contact them, This is major surgery, you shouldn't be left to work it out for yourself. The after care can also make a huge difference between a good result and not so good result - You get an infection in the wound that goes unchecked it can leave a messy scar line when it eventually heals etc.  x

 

I'm not getting this - what's the point of BCN's if they're not advising and not available for you to contact. Or is it that your hosp and breast unit don't have them or what ??

 

Love to everybody, Delly xxx

Windchime
Member

Re: Recovery from mastectomy

Cate - thank you for the link I am going to order tonight so I have them when I'm home. That's a brave step but so worth it to stop this dreadful disease. Xxxx

Cate M
Member

Re: Recovery from mastectomy

Windchime, my mastectomy was prophylatic so no chemo. There's the link for the drain dollies http://www.draindollies.co.uk. They arrive within a couple of days so should arrive in time for discharge. Sending you healing thoughts. 

Windchime
Member

Re: Recovery from mastectomy

Thank you all so much, you have helped ease my mind a great deal. Having a chance to hear from others who are going or have gone through the craziness that this disease brings is a real blessing. 

 

Delly, I am 46 ( thanks for saying I'm young 😊) I had a large DVT from groin to knee and a (suspected PE) after surgery a few years ago so that is unfortunately why the soft tissue is not possible due to the length of the surgery. Although, all the percautions will be in place e.g Klexan and compression boots they have said too high risk. I think that is another reason to have immediate recon so I limit the amount of surgery but also the reason I'm scared. I have quite a few major surgeries but this one with the added risk is like a whole new ball game.

 

Riversdale - I can understand your rush to get chemo started, I feel the same but I can't believe they let you before being fully healed. How are you now??

 

Cate- I'm glad to hear you are healing well, do you need to have chemo? I thought it would be much longer before I could sleep on my side which I know would drive me mad. Sadly, I won't be having nipple sparing, it's bye bye to it all but have seen some pretty good tattoos so that's an option. Thank you for the advice of what is helpful, I didn't even realise you could get drain bags, I am googling them next and about keep up with pain relief.

 

thank you all again, head is clearer - thinking of you all xxx

 

 

Cate M
Member

Re: Recovery from mastectomy

Hey Windchime, I had a bilateral mastectomy with immediate implant reconstruction 3 weeks ago and I'm healing quite well I think. Yes, the recovery is slow but I'm able to do more things each and every day. For example I can now sleep on my side which was impossible a week ago. I still get really tired after even a little bit of exertion but this will get better I hope.

 

Cosmetically, I'm really pleased with my results. I had skin sparing and nipple sparing so my reconstruction looks as natural as they can with implants in. I won't lie, there is some discomfort in the armpit and where the drains were but overall its discomfort and not pain. I stopped taking pain medication about 3 days after the surgery when my drains were removed. 

 

I would say that the things I found most helpful after the surgery were: drain bags (I used draindollies), heart shapped pillows (for the tenderness under your arms), wet wipes, button up PJ's and straws. Take your pain medication regularly and don't wait until you need it, its better to keep it topped up than to chase the pain. 

delly
Member

Re: Recovery from mastectomy

Hi everybody

Windchime - what were your reasons for opting for implant recon versus self tissue ?? There are so many options and makes a decision harder. If you hadn't had the option of self tissue, and you'd wanted immediate recon - implants would have been the only option. I completely understand you saying rushed decision, head all over place. Leave recon till after chemo etc. they wont be able to start chemo till your completely healed.  Can i ask how old you are Windchime ? If you are young, that's below 50 to me, as oppo to oldER - if I were in your shoes now, I would get recon done so all the MAJOR surgery is done and out of the way. Later inflation appts and replacement with silicon op, are very minor further procedures. But . . .  you need to feel sure that IMPLANTS are the right recon decision for you to start with.  If so - go for it!   Then deal and cope with any further probs if and when they arise.   The advance in recon techniques is constantly improving so SHOULD you have future probs ref chemo/rads after implant recon, it's much more likely that something else can be done later to solve it.

 

Riversidedawn - I'm shocked that your surgeon hadn't HIMSELF ENSURED that your wounds were completely healed, before "giving his blessing" to you for chemo. It was his responsibilty. Would have saved his patient load of bother ref infection, then having to have implants removed, and then having to have them replaced again at some stage. Just goes to show that they aren't all infallible and a need for us as patients to take more of an interest in our own body welfare, rather than leaving it all up to them which we are all so used to doing.

 

Good wishes for Thurs. Hope everyone else is doing ok, Delly xx  

riversidedawn
Member

Re: Recovery from mastectomy

Windchime it's definitely worth it from my point of view. One bit of advice is to make sure wounds are completely healed before chemo starts. I was in a rush to get on with it and, with surgeon's blessing, started chemo with a tiny bit of unhealed scar. Result was infections after first 2 chemo's and implant removal.
Windchime
Member

Re: Recovery from mastectomy

 
Windchime
Member

Re: Recovery from mastectomy

Hi, I am having bilateral mastectomy on Saturday & immediate reconstruction with implants ( can't have any other type of reconstruction as I'm high risk for surgery). I'm worried about the recovery and it taking longer to heal etc. Now having second thoughts, not sure if it is general surgery anxiety or that I have rushed in to making a decision without really knowing what is happening, should I have waited and let the chemo start before reconstruction. I don't know head is a mess tonight, I'm normally so positive.  All of you lovely ladies, have been through so much, what is experience if you have had reconstruction is it worth it - what has recovery been like?. Sorry to ramble and not even sure if I have used the right thread!!! Xx confused.com

delly
Member

Re: Recovery from mastectomy

Hi again NMT, 

How goes it with your underarm pain?? Has it settleddown ? because your last post was a matter of days post your surgery. Plus you had pressure from the slightly expanded expander on the immediate surgery scar area.  

Please let us know how you're doing with it all.

Dellywelly xx 

Cate M
Member

Re: Recovery from mastectomy

I had my bilateral mastecomy 3 weeks ago and have the same discomfort under my arms, i also have a lot of swelling there. My BN explained that its where the surgeon had pulled the chest muscle (pectoral) away from the ribs to insert the implant. Its also where the surgeon 'shaved' the muscle to eliminate any breast tissue. The BN placed large padded dressing loosely in my post op bra and pulled it up to cushion my underarm. It now feels so much better. The dressings she gave me look like sanitry towels but they do work a treat. 

 

I still have tender areas around the drain sites and of course the ants under the skin are keeping me from being truely confortable, but each day heals something else. 

kate48
Member

Re: Recovery from mastectomy

Hi thereBY
That underarm pain is normal I think. I had it and the consultant explained its where the mesh is knitting with your muscle. I found that if I avoided clothes that were tight fitting in my arm pit that helped. I also slept with a pillow under my ribcage. Most of all take the painkillers for as long as you need them.
Kate x
NMT_1
Member

Re: Recovery from mastectomy

Oops I meant rib cage!! Sorry x
delly
Member

Re: Recovery from mastectomy

Sorry NMT - I'm not understanding what you mean by ANDROID CAGE. Was it a typing error and can you clarify please
Delly xx
NMT_1
Member

Re: Recovery from mastectomy

Hi all,
I had a skin sparing mastectomy, with node clearance and reconstruction using an expanded last Monday. I've already had 6 rounds of chemo and have rads after the expander is fully inflated. My under arm android cage is really sore any ideas when I should feel slightly more normal/less pain? Any advice welcome about what I should/shouldn't do. X
delly
Member

Re: Recovery from mastectomy

Catokitty - that's disgusting. Did you do anything about it - the physiotherapist?? That's starting out with one problem and ending up with another. Not what I think of as progress ! x

 

Doubledd and Spongebob, I'm pretty shocked at all this lack of after care considering the importance of it. x

 

Katylou lovey, yeh it's bloomin awful all the waiting around. I remember I only waited a week with my first biopsy for 1st breast but had to wait 5 for results of 2nd breast biopsy. You've only another week and you'll be more in the picture about things, know what you're coping with and better to face it.  Hope hubbies results are nothing serious. Yeah, life's not always considerate when it comes to dealing things out in an even spaced, copable way. Sounds tough - I'm really sorry, I'll have a word with 'im up there (or her). x

 

Thinking of you all and sending healing and calming thoughts xxx

doubledd34
Member

Re: Recovery from mastectomy

Thankfully no further treatment is required for now, all breast tissue has been removed and lymph nodes are all clear. 😄😄 with regard to physio (or lack of) luckily I am recovering ok although there is a small indication of a seroma on my abdomen which I have to monitor it doesn't get bigger...

catokitty
Member

Re: Recovery from mastectomy

Just butting in to say I had single mx in a London hospital and my physio input consisted of nice young guy with physio badge handing me a leaflet. I really worked hard on the exercises and managed to pull a muscle in my back because my posture was all wrong. Good luck with your appointment.

doubledd34
Member

Re: Recovery from mastectomy

Thanks Sarah, I had surgery in a major London hospital even other patients questioned why a physio was not assigned. Anyway have my first outpatients appointment tomorrow so will see what the lack of aftercare has done to my healing. Will also find out if Dcis is cancerous and if chemo/radiotherapy is needed...Dawn 

Katielou2
Member

Re: Recovery from mastectomy

Delly thanks for your wise words. I now have a date for CT scan, next Wednesday 11th, then will have to wait for results, to be discussed again at MDT, then wait to see oncologist - it's just drifting on and on, I really thought I would be much further on by this stage. I'm feeling really anxious, not coping very well😥, so worried it has spread.

My husband has been brilliant but unbelievably has been referred to urologist urgently due to raised PSA, he has his appointment on Friday. I'm finding it so hard to deal with his worries on top of everything I'm going through! Can life throw anything more at us?

spongebob52
Member

Re: Recovery from mastectomy

 

Hi doubled 34, like you mastectomy and diep flap from abdomin, however back in July, performed in regional hospital so little after care.After talking with work collegue whose husband is a consultant oncologist , self referred to physiotherapy,  Seen within week and given exercises to do ,which have helped, find swimming really good. Managed to get back to work but stomach still very tight and arm still tight but improved greatly. My next plastics appointment isn't till Christmas eve so hope everything's going well. Hope this helps Sarah

doubledd34
Member

Re: Recovery from mastectomy

Hello everyone, this is the first time I've ever done anything like this so I'm a forum virgin! Anyway I was diagnosed with Dcis in Aug and because it was in two areas a mastectomy was as advised as the best option to remove. I had surgery on 21oct a skin sparing mastectomy of right breast with diep flap from abdomen. Since diagnosis up till today I have not shed a tear, in fact I'm more thankful that any cells that may progress to cancer have been caught early - this however had to be confirmed at my outpatients appointment next week. So my question is am I normal that I am gong about things as though nothing is wrong? I even went on holiday before my operation as I didn't feel like I was ill ( the Dcis was found through an invitation mammogram letter not because of any symptoms like lumps etc) . day one after the surgery I was walking around the ward although had to stay in 5 days because of 3 fluid drains. My aftercare has been quite shocking really, not really sure what to expect with the healing at the moment it feels a mixture of bumpy and smooth, achy and spreading under my arm😳 I was bid chested anyway and it is almost the same size as before. Been out walking and found info on exercises for the arm online , I just hope I'm not doing anything too much that might hinder the healing process. Would be nice to hear any comments, thanks 😊

delly
Member

Re: Recovery from mastectomy

Julia, we could do to know more about your amazing surgery. Was it by a plastic surgeon or onchoplastic ?? Which hospital ? and perhaps you could PM the surgeon to me would you. Would you also chat to Jennie on her post - on another thread under surgery. xx

delly
Member

Re: Recovery from mastectomy

Ah Katielou - I've got it c**p - I was a bit slow there x

delly
Member

Re: Recovery from mastectomy

Oh fffffflip Katielou, so your still waiting again. I'm sorry lovey,  it's really up and down for you isn't it.   Am not quite sure what your expletive word c*** is - did you mean s*** !!   You any idea when your scan will be ?? I know it's difficult for you and easy for me to say to say "Try not to worry and try to stay as positive as you can" but I'm sure you WILL and WONT"  Keep posting on here and telling us how your feeling.  Are you having to go through this alone or do you have a good husband/partner/family by your side to support ?? You need to cosset yourself at the mo and preferably have some cossetting from someone else as well xxxxx

 

Ali, despite your description, I still can't envisage what you're expander side looks like. Do you mean it's shifted to the left, away from your central cleavage?? Can't you phone through, speak to surgeon or breast BCN to ask why it's so painful. That obviuosly wasn't explained. And I'm sorry,  if it were me, I would ask my GP for ref to another surgeon, even if it's elsewhere nearby, for a second opinion. Is yours an oncho-plastic or plastic. If he's an oncho, it might be of benefit to get a reff to a good plastic. Your surgeon will understand, it happens, people do do it. I'm just concerned that you go ahead and you're not happy + it may be easier to have it tackled in a better or different way before, than not be able to afterwards.

Why does he think it's shifted ??

 

Sue - how's it going now. Yeh let it flow - no point keeping it in. It's a very traumatic thing to face and have done. 

 

Jennie - I'm so sorry. I've overlooked your post because, unlike mine !!, it was a brief one. I didn't get whether you've had your mastectomy and waiting on results as to whether you need further treatment such as chemo or haven't had it but are waiting on results + having to decide on recon, what sort or

 none. It wasn't very clear if you reread your message. Post in again and let us know. And yeh - I would complain about your delays too. Don't be put off by the experience of Ali's (Hordens) expander. I've had very little problem with mine - in readiment for silicons. They were tender to begin but that's only to be expected. I don't know how old you are and I'm guessing you've thought about all the pro's and cons of simple implant surgery versus self tissue recon. Such  as another wound you your back leg or tummy + usually another to your breast, longer healing time but a warmer and more naturallooking  breast shape. If you haven't already checked out the other sections in SURGERY - there are a lot of positive experiences and results too. I never wanted self tissue recon all along so I didn't have such a difficult decision to make.

 

Love to all Delly xx

Horden1966
Member

Re: Recovery from mastectomy

Hi ,

hope everyones ok . 

Katielou- hope u have your results and everthings going ok . 😊

Delly- I am actually not happy about the way things are going . If I wanted to speak to my BCN she is never available if I ring as she is so busy in clinic. She is really lovely and my surgeon is a lovely man . They are both very caring. I really don't want another surgeon dealing with me I am quite happy with him I will just have to put my foot down🙅 My natural breast is 36-38 c depending on weight gain and my other breast I have never actually measured it but I would say it is a size 32 ? Not sure .😏 I never thought about asking to have the capsule around my tissue expander taken out to see if this solves things to give it time to stretch my skin . I am very disappointed with the situation. I think exactly the same that it defeats the object of a recon using a prosthesis of which I wouldn't want anyway . The pain is getting worse it is getting more tighter but don't know if that is off the saline fill or the capsule? When I look down to my chest the lft side is where I had the mastectomy but the tissue expander is offset about 3 quarters to 1 inch where there is no muscle at all my cleavage isn't where it should be ? I know it's not going to be the same as before my op but I can't see the point of him doing what he wants to do the op 3 month earlier . He seems to think there isn't much difference in size but I know there is ,and my BCN knows as she suggested reducing size of natural breast or a prosthesis . I am so worried for the final outcome of the recon and me being disappointed with the results and that fills me with dread . Sorry for the doom and gloom having a bad day. Ali x

Katielou2
Member

Re: Recovery from mastectomy

Thank you Delly - arm feels much better, had some more fluid drained from seroma, happy it's healing well.

Results not great - feeling really upset again. Area of abnormal cells larger than indicated on MRIs, 10 out of 17 nodes affected. I now need another CT scan to check for any spread before a decision is made on treatment. I had been feeling quite optimistic that 7 months on Letrozole was having a very positive effect on cancer, now not sure. I feel I've gone back to start with all the unknowns and questions no-one can answer, pretty c*** isn't it??

delly
Member

Re: Recovery from mastectomy

Ps. Katylou - good luck with the results tomorrow. Let us know how you go on

xx

delly
Member

Re: Recovery from mastectomy

Katylou - what was said about your upper arm yesterday ??

Horden - That's  very disappointing for you. What size have you got to with your expander size ? Got that you've been told you can have your natural breast reduced to match the current size of recon expander side - is that gonna be acceptable to you though ? And it somewhat defeats the object of recon if you're going to have to wear a prothesis to your natural side doesn't it.

What I'm not understanding is - I've known / heard of other women suffering capsulation sometime after their SILICON implant and it's been removed, dealt with and replaced again. I'm not understanding why that can't be done with an expander to then be able to continue with expansions till your required size has been achieved for the silicon replacement ??!

And yes, taking fat from your stomach is liposuction - but whereabouts is the dent in your chest that he's talking about filling ??

Cording - your earlier post was 10 October, 11 weeks following your op !! It's now 13 wks.  You need to get more physio to sort this out. Get back in touch with your BCN and tell them you're still having probs with cording, can you please be booked in with physio again.

Back to your surgery - you've got 2 months to have to wait till Dec.  I don't know what area of the country you're in and what other hospitals are nearby, but personally, espesh as you're not happy with what he's suggesting and proposing,  I'd request a second opinion from a different surgeon through my GP, pref ASAP. At least you would then have a comparison. If another surgeon says the same then at least it'll give you more confidence to move forwards with it.  We ARE all entitled to a second opinion, you're not being a nuisance AND it is very important to have/feel that confidence with everything the surgery entails, along with your future happiness.   Better to check other avenues NOW lovey  before it's too late.

 

Julia - you're surgery sounds amazing  as you said no scarring on your back or extra to the breast !!! Have not heard of that before - sounds like a high spec almost sci -fi procedure.

Delly xx 

Julia
Member

Re: Recovery from mastectomy

Hi, I had a mastectomy in May with immediate reconstruction but no implant.  They took a muscle from my back to create the flap and this was done laparoscopically so only have a scar in my armpit - nothing on back or front.  I then had liposuction from my thighs in September and injected into breast to increase the size.  I need another operation to do the same as much of the fat has reabsorbed into the rest of my body.

Still finding the tightness quite hard to cope with and it feels like I have an iron bar inside running from the armpit through to the chest area.  However, things are much better than immediately and a few weeks after the operation.  Has anyone had the lipomodelling and found it successful?

Julia

Horden1966
Member

Re: Recovery from mastectomy

Hi everyone,

hope everyone's doing  ok today 😀. In reply to painful tissue expander. I went to see my surgeon last week and I told him I was in a lot of pain with it but I had noticed it starting to mishapen. My surgeon said it is starting to form a capsule formation which is why it is causing so much pain . I feel like I have razor blades under my skin , it feels so tight ,stinging and burning . Well, I was supposed to have this in until march next year, so as to give it time to stretch the skin for my silicone implant .But because of the capsule he wants to do my op in December now but that means the skin won't have stretched enough, but I have to have it taken out. Has anyone else had this issue? He was then on about reducing my healthy breast to match the implant as my healthy breast is twice as big as the other . I don't like the idea of this and I am quite frustrated . And  my breast nurse said I could have a prosthesis to put in my bra after the reconstruction . Ahhh I don't know what to think anymore . Also he is on about taking fat from my stomache to fill in the dent in my chest, has anyone had this done ,is this liposuction ? I have also been doing my exercises but I have cording which can be very painful and tight but it is a lot better to what it has been . I may repost this question in a seperate thread about the capsule formation. Thanks in advance for any replies. 

Katielou2
Member

Re: Recovery from mastectomy

Thanks everyone for taking time to reply - 3 weeks on I am feeling a lot better, upper arm still feels strange but bearable. I have been good at doing exercises and they are getting easier, beginning to feel that I may be able to drive again soon! Scar healing but feels tight - I had seroma drained last week and it's swollen again, I was warned to expect this, it seems to be affecting my back and shoulder blade the most. I am back at hospital tomorrow as pathology results weren't back last week, I will get it looked at again. 

delly
Member

Re: Recovery from mastectomy

Horden - I was going to say the same as riversidedawn - Have you mentioned how uncomfortable your expander side is to your Breast Care Nurse or better still, surgeon. It'sobviously always going to be uncomfortable after each inflation until the skin has stretched again. Also - I made a point of mentioning to my surgeon that I was concerned about the stretching as my skin is naturally quite thin and delicate. It's great at healing, just not great at stretching (very prone to stretch marks). So we agreed to do the inflations more gradually using less saline it was 50mls for me instead of 75-100 and every 4-5 wks. I had to stand my ground when I had a registrar or trainee surgeon doing one of my double boob inflations. He was pushing me to have more put in which I had to explain what had been agreed between the actual surgeon and me which the registrar did but he was then pushing me to go back in 2-3 weeks - which again I refused and extended it to 5 wks to give the skin a better chance to stretch GENTLY. I felt like clocking this idiot and saying "Don't you ever read your notes or take more note of what your patients saying. Who knows my skin best - YOU or ME"!!  Bit my tongue but felt thoroughly peed off about the whole thing. Even the nurse agreed with me for standing my ground - bolshy bleep. It's a problem when you don't see the same person, I hate lack of continuity and I know it has to happen sometimes, but as I said, it would all have been down in my notes. Bah Humbug.

 

I was coming from delayed double mastectomy to double recon - expanders then silicons. Even 50 mls was uncomfortable till it'd settled down after each inflation, usually after 2-3 wks. Just the jolt of walking was uncomfortable, had to slow my usual pace down and brace both my boobs with an arm across both of them.

 

Yeh, I echo the importance of doing your physio exercises after the mast, keep gently pushing the movement a bit further all the time. Pester your breast care nurses if you're not sure or unhappy about something. Tha's what they're there for. And just take your usual paracetamols/neurofen regularly in the early stages. 

With regards to numbness in your upper arm following lymph node clearance, the feeling will come back gradually, although I have permanent slight numbness underneath the upper of one of my arms and the thumb and two forefingers. It's not a problem, it would have been had I still been doing the work I used to involving sharp scalpels and instruments, but it doesn't stop me doing anything else. It's just down to slight damage to one the peripheral nerves.

 

And yes, remember you've just had major surgery. It's a massive trauma to the whole of your body system along with the effect of anaesthetic Not to mention the emotional trauma. As for that - a good listening supportive friend who's happy for you to have a good blub if you need to release (or rant!! cos cancer can make you feel very ANGRY) over an obligatory couple of glasses of your favourite vino/tipple works wonders !!

Healing thoughts and well wishes everybody, and keep kicking that blasted C where it hurts.

 

Delly xx.

riversidedawn
Member

Re: Recovery from mastectomy

Hi ladies, I'm just over a year past mx (sept 14). I had immediate silicon implant and full node clearance.

I was in hospital 4 days - can't imagine coming out the same day! My left arm shoulder were very stiff, sore and numb at the same time.

You must keep doing the post op exercises several times a day to get mobility and strength back.

I was driving 3 weeks after op and returned to yoga which I felt was fantastic both physically and mentally.

I does improve over time. I wont deny there are ups and downs depending on the next steps if treatment.

Due to complications I had to have my implant removed and replaced later with an expander between chemo and rads. I've not found it a problem horden - is yours fully expanded yet? The only time mine was uncomfortable was a week into rads when the skin tightened, so my surgeon removed some saline to relieve some pressure - I wonder if yours is soo tight?

A year on and I have full range of motion, strength not bad though careful what I lift on affected side. Still an odd sensation of desensitivity / numbness in bob, armpit and back of arm but its not bad.

Keep moving, it will get better, but discuss any worries with BCN xx
jennie
Member

Re: Recovery from mastectomy

I hope you are both feeling a little better a few days on? I am presinle mx, I have been waiting and waiting for test results with my diagnosis of two months ago changing and trying to decide about future reconstruction or not. Your expander experience  sounds terrible, I am leaning towards own tissue from top of leg or no reconstruction. I am about to complain about the delays.

Katielou2
Member

Re: Recovery from mastectomy

Thank you very much for the replies - I am feeling much better overall, taking it easy and accepting that this is going to take time to recover from. It is the sensitivity of my arm that is the hardest to cope with - not something I anticipated or felt prepared for.

Wishing you all the best in your recovery xx

Sue54
Member

Re: Recovery from mastectomy

Hi I had my mastectomy on Tuesday this week. How you coped coming out two hours after the operation I really dont know. i have to say the care at the hopsital and advise given was fantastic. Like you I feel every bump in a car journey so simply taken this as my body saying its too soon. Again im up and down on the energy front and becoming tearful. I was though warne by the hopsital that this is perfectly natural and not to be afraid to let the emotions go. So I do and it helps, its your time take it whether a good day or a bad one. I find people very draining and so I just tell them politely that I need to rest or just dont want to talk about it. Most I have realised talk about their fears and are totally blind to the effect on you. So simply indulge yourself your worth it !! Kind regards Sue

Kiki2
Member

Re: Recovery from mastectomy

Sorry you are both having such a tough time with your surgery. Take your time and don't rush the recovery, it does get better. For several weeks I couldn't imagine being  fully mobile and walking any distance etc but then all of a sudden it starts to get better. After surgery I felt a bit like I wanted to stay safe in my little bubble at home as it really knocked my confidence, but that passed and now I'm as busy as ever. Be kind to yourselves, it will get better!! Xx

Horden1966
Member

Re: Recovery from mastectomy

Hi, 

this is my first time on the forum and I have lots to say as I have all sorts going round in my head ,but . It has been 11 weeks gone Tuesday since I had my mastectomy and I think it leaves a big physcological scar which can make you very down and teary. I had a mastectomy because I had a 5.5 cm mass in my left breast which was dcis and calcifications but when they did the mastectomy I had 2 cm tumour of invasive cancer. They took 2 nodes but they were clear so didn't have to have any chemo or radiotherapy ,but have tried to take tamoxifen twice but bad side effects and have had bloods done to see if am in menapause so I can try another drug,going for my blood results in 4 days. One of the main problems I am having at the moment is this tissue expander in my breast which is so painful I could literally scream sometimes and I can't stand it ! I will have this tissue expander in until march next year supposedly half the time I wish I could take it out for some relief of the pain . It has taken me a long time to talk about what I have been through as this is the first time I have responded to a thread . But hopefully we can all help each other . These last 11 weeks have been like a living hell as it is taking me a long time to try and accept what has happened to me and it is so frustrating when you have been told you have to have an operation and you have no control over this and so vulnerable . I have cried a lot of tears 

jillybee
Member

Re: Recovery from mastectomy

Be kind to yourself...continue taking the painkillers.Wear pretty loose clothing.Problem is,you are dressed and out and about,and we forget we have been through major surgery.......people mean well....and you may look well,but feel rubbish.My advice .....chocolate,trashy mags,day time TV....😊

Katielou2
Member

Recovery from mastectomy

Im feeling really low today and just wondered how others had found their recovery from mastectomy and node clearance.

I was diagnosed in February, had 6 months treatment with letrozole with good response and mastectomy with level 3 node clearance 10 days ago. I was discharged from hospital after 2 hours which I was prepared for but still found this quite shocking in some respects. My follow up appointment is later this week, expecting to also need radiotherapy.

Overall I feel I am recovering well, drains removed after 7days, dressings all off since yesterday, wound looks clean (although much bigger than I anticipated).

The hardest thing is how strange it all feels - so numb yet burning/stinging/buzzing sensations. The biggest problem is how my upper arm feels - really sensitive, finding clothing really irritates it. I've been out this morning and found car journey so uncomfortable - felt every bump, jolt etc.

I had stopped taking painkillers couple of days ago but started to take them again last night.

Everyone says how well I am doing but today I feel tearful and horrible - how long does it take for everything to feel better and for these awful sensations in arm and axilla to lessen?

I know everyone's experience is different but just looking for some reassurance from others that have been through this.

Thanks for any advice you are able to offer.