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.
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…?
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
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
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
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.
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
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.
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.
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?
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.
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??
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
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.
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 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?
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
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