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To reconstruct or not?

27 REPLIES 27
Member

Re: To reconstruct or not?

Hi Daisymoo - couldn't NOT respond to your ultra "consideration" to you and your partner's physical antics. Ha Ha hee - that's so funny, even though it's serious. Love it !!!! Sooo glad to hear you seem to be doing and coping well with it all. I think you've made a good decision ref poss effects of rads to recon. Yeh, it may not have caused a prob, but . . . it could have done though. Good luck with your rads, hope you don't suffer too badly with SE's, and hope you can keep up your wicked sense of humour. You gave me a really good chuckle today - bless you, woman. 
Lotsa love, Dellywelly xxxx

Member

Re: To reconstruct or not?

To further update this thread. I had a single MX in April and did not have immediate recon on the advise of my surgeon as he said if I was having radiotherapy the results could be a disappointment, so starting my rads on Tuesday and will plan to have a DIEP recon in 12 months time.

 

Have to say sometimes I look at my chest and am surprised I have a boob missing then think oh yeh.... m scar is healing really well and I use ASDA soft cotton pull on crop,top and use my knitted knocker much more comfortable than my ‘proper post surgery’ bra - these rub my scar where I had SNB.

 

I am still pleased with my current choice, sometimes think maybe I could have taken the chance that the rads would not have caused a problem but then think no I’m ok.

 

Saw the BCN this week for my prothethis which is lovely in my proper bra, bit heavy for the crop top, and if we go out in an evening I wear this now as it feels more ‘dressy’, but not essential.

 

Lucky my partner is fine with my scar and it does not cause him a problem. Except being straight talking here, when having sex if he is on top it is uneven for him so I wear a bra / crop top LOL. Don’t want him to fall off as might spoil the moment haha😊😊😊

 

Hope everyone else is getting on ok with your decisions etc take care all 

 

Member

Re: To reconstruct or not?

Hey Jtb - Hope you're doing well post your mast op? Yeh, that's a big difference ref your being diabetic and healing following such an op, and understandable in the choice not to have recon right now. Hope your sons wedding went fabulously well.

Poppy-Girl and Fairy Dust - Brill. Am soooo pleased for you both. Awww Poppy-Girl - Yeh, a cleavage again. I shouted "Whoohoo"!, when I first looked at myself in the ward toilet mirror, after I'd had my expanders installed and had my front and underarm curves back, even with just an initial 100 mls. Like you, Fairy Dust, I knew  I wouldn't and didn't like living without recons. So glad you fought for, and got what you wanted. Hope you're both now fully healed and pleased with your recon results.

Lotsa love, Delly xxxxxxx

 

Member

Re: To reconstruct or not?

Don't know whether my reply is too late for you, but it may help others.

 

Had double mastectomy with 1st level node clearance and DIEP reconstruction on 29th April. I was diagnosed before Christmas and knew I personally couldn't live without reconstruction , but didn't want implants. It took a long while for the NHS to agree to what I wanted as it's not done in my area, despite it being our right to have what we want wherever we need to go, hence the delay.

 

I'm now a week post surgery. Yes, there is discomfort and I feel very tired at the moment, but I used the time before the op to get as fit as I could, ate as well as I could and I feel it has paid off. I've still got a long way to go, but I am so pleased I've taken this route. My body may not look very pretty at the moment, but only a week after and I can already see the potential. Whilst this is not easy I'm quite shocked with how well I do feel, all considered.

 

Ultimately, I went with my gut feeling and that's all anyone of us can do. I did my research, so it was a well informed decision. Don't let anyone tell you what you should chose. I didn't and they didn't make it easy for me, but I'm so glad I didn't give in. Xxx

Member

Re: To reconstruct or not?

I'm the same age as you and initially I was not going to have a reconstruct. However after 2 years of coping with a lopsided figure and a consultant persuading me with the added bonus of a tummy tuck I went for it!

 

I had the op 4 weeks ago and have no regrets whatsoever. I had the best of care at the Queen Victoria Hospital in East Grinstead, virtually no post op pain, just the feeling I had done 1,000 situps! I had the op on the Tuesday and was discharged Friday am. I'm driving now with no discomfort and I just giggle like mad when I look down and see a cleavage again!

 

Best decision I ever made Cat Happy

jtb
Member

Re: To reconstruct or not?

Hi to everyone who has taken the time to reply with valuable advice and support.  Well I had the most relaxing and enjoyable weekend away and I am now ready to start my journey.  My first CAT scan is tomorrow followed by a bone scan the following week.  I have to meet with my oncologist on 16th May to get the result.  Fingers and toes crossed it hasn't spread.  My son's wedding is on 26th May then the mastectomy will be very soon after 26th he has said.  I have decided I am not going to have reconstruction at the moment as I feel it will be easier for me to recover without it.  I am diabetic and my oncologist says he would need to take that into consideration for the operation.  I have the option to change my mind in later years.  I am feeling quite strong and I am still working (part time/3 days) as I feel this is keeping me busy as well as all the planning for the wedding, I'm happy I can wear the outfit I bought.  I have a lot of support which is helping me to be strong.  I hope all you ladies are also strong too but realise it's gonna be a 'bumpy road' and really hope I can keep it up.  It's so nice to hear all your experiences and I love all the advice and 'tips' you have given me.  Oh and that's to the lady the gave me the heads up for the 'knitted knocker'.....I've already ordered on lol...take care everyone!

Member

Re: To reconstruct or not?

Hi Ladies

Hi jtb - I hope you enjoyed your "pampering" night. What a gorgeous treat, and what a thoughtful hubby, awwww. When exactly is your op?? Am wishing you speedy healing for and a quick return to home.

I had very delayed bi-lat recon for implants, 7 yrs following, at 55, 2014. Am unfortunately still only at expander stage, due to falling off the horse for severe depression reasons, not physical complications. Chose implant recon because it's the simplest, less risk of healing comps and no further scars to breast area and elsewhere on the body. But does take longer to reach completion (approx 1 yr, depending on desired size and whether nipple recon undertaken). Implant results have improved greatly with the "tear drop" shaped ones, and now often with the addition of a "Strattice" or tissue matrix "slings". But I felt an immediate boost to my confidence just from regaining more of my old body shape from just the expanders. I was single at the time of my masts, and it affected me badly, body image and confidence wise, from a dating point of view, in that 'I' wasn't happy looking at my body, so certainly wasn't happy with someone else looking at it, in the intimate bedroom department. So it stopped me pursuing relationships. I was okayish after one, could have probably coped and lived with it, but not after two.

But we're all so different, aren't we, whether married or single. Know sooo many women who's husbands/boyfriends don't mind, are just glad they're partners are still alive. Then other women who's marriages and relationships have broken down because their partners can't cope with loss of one or both boobs. As if it isn't bad enough dealing with BC on its own!!   

 

Good luck jtb, and everyone else, whether recons or not. Let us know how you go on when you can.

Loadsa love to you all

Delly

Community Champion

Re: To reconstruct or not?

Hi Ladies - it's been really useful and interesting to read through all the posts.

 

I had a MX and complete lymph removal in September last year.  The operation went well and as others have mentioned the cup of tea and food after are the best tastes in the world!!  I have been very lucky and all healed beautifully.  I do have quite a bit of internal scarring due to op and rads and I have to exercise daily still to enable me to have full movement.

 

I will be considered for recon in a year's time - as the rads I had mean waiting a year.

 

At the present time - I'm happy as I am - I use a prosthetic breast and when I'm dressed, no-one would know, only me - as it can feel heavy towards the end of a long day.  I also have a knitted knocker and would definitely recommend.

 

I'm still undecided - I will not say never - but at 50 I've got plenty of time to change my mind!!!

 

There's also a great link under "Moving forward after breast cancer - recovering from treatment - a flat way of life..." - more comments from ladies in our position.

Member

Re: To reconstruct or not?

Hello

 

I had a full mastectomy with node clearance followed by chemo and rads.  To begin I was not going to have reconstrution. 

 

I was not able to have reconstruction straight away anyway as needed chemo and rads so had to wait but after undergoing everything I wasn't at all sure or keen that I was going to do it.  However 26 months after having my mastectomy I had a PAP reconstruction and I can honestly say it is the best thing I could have done.  It is far better than I hoped for.

 

I didn't realise how much I missed having a breast until I had one put back and no I wasn't distraught in the big scheme of things I was happy to be alive. 

 

Yes, it is a big big operation but I now I feel like I have a real squishy breast again that feels and looks pretty good and I don't have to worry about wearing a prosthetic which I didn't like.

 

For me the moment I had the breast reconstruction was the moment I was able to start to move forward and begin putting it all behind me as I started to feel like myself again.

 

There is a very good group called Keeping Abreast who can help with breast reconstruction and if in your area they have meetings locally where you can chat to other ladies who have been through it and see the results.  When I went to one of the meetings I met a lady in her 70's who had only just decided to have a reconstruction after waiting more than 15 years as she had been too nervous.  After speaking with her and other ladies who had been through it I made my decision.

 

Take your time to think about it all, it's a big decision and only you can decide if it's right for you.

 

Best wishes

 

MM

xx

Member

Re: To reconstruct or not?

You're most welcome jtb, do let me know if you want to ask anything else about surgery/not having reconstruction. The knitted knockers team are amazing. I cannot recommend them highly enough and it is such an wonderful thing to know there are these altruistic women knitting for those of us adapting to a new state. I will always be grateful for their generosity and skill.

 

Another small tip, I bought a heart shaped cushion which has been invaluable on the side I had the axillary clearance, especially when sleeping. 

 

I hope you're feeling as okay about everything as you can. Don't hesitate to let me know if anything else occurs to you or you just want to talk about next steps. Do you have a date yet? x

jtb
Member

Re: To reconstruct or not?

Hi AnnaKarenina...again, what amazing information.  You have certainly helped me with what to expect.  You seemed to cope very well.  I ordered the set of 2 post surgery front fastening bra packs (one black and one white) from Asda this afternoon - I hope they are as comfy as yours.  I am trying to get organised for coming out of hospital with bits and pieces to help my recovery.  I totally love the 'knitted knockers' idea, I will go on as soon as I finish this.  I didn't want to pay too expensive until I know what I am dealing with.  I though I might be in hospital about 4 days but glad to hear you were only in 1 night - that's fantastic.  Thank you so much and yes it certainly has helped me a lot. Liz x

Member

Re: To reconstruct or not?

Hello, I am 11 days after my bilateral Mx (and axillary clearance) and I decided against reconstruction. I found being a patient (I had chemotherapy first) tough and I simply didn't want the additional surgery/recovery time/potential complications. At least for now, although I don't think I will change my mind. I have felt this way from the beginning and it has been pretty constant, although I did explore reconstruction and the options so I could feel that I was making an informed decision which I had 'tested' a bit. 

 

I have been amazed at how well I have recovered from the bilateral Mx/axiallary clearance. I was discharged the day after the operation and managed on paracetamol and ibuprofen for the next few days. I haven't needed any analgesia since day 5. I have been conscientious about doing the exercises and see my mobility improving each time. 

 

Yesterday, I went back for my surgical review and dressing removal. All is healing well although I am a bit swollen and retaining a bit of fluid under the right arm. The consultant was happy to leave well alone though as it is not causing any problems and apparently should right itself in time. I have been able to look at my scars since the dressing was removed and it was nowhere near as difficult as I had imagined. They are surprisingly neat and I can accept the way I now look. In a soft bra (highly recommend the comfort model from Asda which is cheap and has worked much better than the more expensive options I invested in from a specialist supplier) with my knitted knockers, no one would know I have had a double Mx. 

 

If you don't already know about knitted knockers, they are wonderful and well worth investigating. I find them more comfortable and natural than the comfies I was given in hospital.

 

I also spoke to a brilliant woman via the Someone Like Me service when I was thinking about not going for reconstruction prior to surgery and it was one of the best things I did in preparing for the operation and what follows.

 

I hope this helps a bit. Do feel free to ask if you have any questions or want to mull anything specific over a bit more. We're listening! xx

jtb
Member

Re: To reconstruct or not?

Hi Northern Gal...wow! so much helpful information...thank you so much.  I feel the decision has been made now in my mind.  I don't want reconstuction.  I don't feel it's right for me and as you say my surgeon has also said i can decide at a later date.  I hope you continue to do well and heal quickly and I WILL be faithful with my exercises! as I do know from the first op (18 years ago - Lumpectomy) that it's vital. I'm going to now have a look at the Asda/M&S website for bra's.  I have been told to buy it before i go in and take it to see the bcn.  I am anxious to see the choices.  Thanks to everyone for all their kind and useful information.  ps Hubby has booked a fab hotel for tomorrow before we begin this journey.  Nice wee bit of pampering Liz xx

Member

Re: To reconstruct or not?

Hi jtb

I had a mx without reconstruct in Dec 2017. Not having reconstruct was an easy decision for me due to the length of surgery, my age - I'm a young 52! and I'm not so bothered about body image though I do look after myself.  However, the consultant has left the door open should i change my mind at a later stage. I know of a lady who had reconstruct 10 yrs post surgery! For now I'm happy as I am.

 

I know we are all different, my scar healed relatively quickly  but I did have problems with a large seroma and blood clots in the surgery area ( i didn't have drains inserted after surgery) and attended the bc clinic several times for the fluid to be drained but it  filled up again. In the end, I had a separate appointment for  a 'vacumn' which sucked out all the fluid and I'm fine now. I dont know whether women who had the drains inserted after surgery have had these issues. The surgery area is not completely flat as i have some scar tissue and i also put this down to being big busted pre surgery. Bear in mind every mx and scar will look different.

 

I've adjusted to wearing the softie and have taken out some of the 'stuffing' to look more even. I will soon be fitted for the prosthesis. Most days I go out without the softie and have mastered the art of disguise with my clothing, no one would ever know I have one boob Smiley Wink I've found several good quality post surgery bra's on Asda's website and M&S have a good selection. I had a bra fitting recently at M&S and the lady was lovely, understanding and had years of experience with fitting ladies who have had a mx.  When I booked the appointment I mentioned that i had a mx as I wanted someone with this experience. I've also bought a few padded bras where I can take out the pads and insert the softie. That said, I feel liberated not having  to wear a bra all the time and support vest tops are good too especially during radiotherapy. As the other ladies have said, it's important to keep on doing your breast and arm exercises, even if you dont feel like it. Im 4 months post surgery and down to twice a day because I know I have to do them Smiley Very Happy

 

If you feel up to it, you can ask your bcn to put you in touch with someone who has had a mx without reconstruct to talk and ask questions. The decision you make has to be the right one for you.

 

Wishing you the best xx

 

 

 

 

 

 

Member

Re: To reconstruct or not?

I lost a stone at the beginning of the year by cutting down on carbs. It also helped my blood levels. Butter is fine, it's the bread! I substituted ryvita. Still lovely with Lurpak and Marmite.
jtb
Member

Re: To reconstruct or not?

Sally I am trying so hard to cut down on my toast and lurpak...so hard...trying to lose a few pounds before surgery!!!
Member

Re: To reconstruct or not?

Marmite AND Lurpak!

Lots of both is the only way to go.
jtb
Member

Re: To reconstruct or not?

Butterfly sounds good to me...although I might need to swap the marmite for Lurpak haha x
jtb
Member

Re: To reconstruct or not?

Hi Butterfly thank you for the very useful information...think i'll be buying some soft vest top and a great tip to put them on via the feet...it's so comforting to know that you and some of the other girls have not had too much discomfort. I will need to force myself everyday to do the exercises as is def seems worth while. I didn't do too well 18 years ago and had to go for physio but gonna try harder this time. Sounds like your hard work is paying off and as you say go with your gut feel ...I'm pretty positive this is what I'm gonna do. Thank you so much for your help, Liz xx.
Member

Re: To reconstruct or not?

Oh and the marmite on toast and cup of tea after the op was the best I’ve ever tasted! Xx
Member

Re: To reconstruct or not?

Hi Liz

 

I had a mx in Feb with no reconstruction, I needed to know it had all gone, but have been told I have the option to reconstruct at a later date - probably won’t. I had very little pain, more like discomfort and the scar healed very well. I did develop a seroma which was weird but it was drained just the once thankfully, although I’m still not completely flat..really not sure what I should be expecting! I’m happy with what it is though. 

 

I bought crop tops from Sainsburys, seamless and slightly padded, very stretchy for when I wanted something other than a soft vest top. I put them on from the feet up! They have worked very well and when I had my seroma I wore them at night too. I’m happy with my softee’s so haven’t rushed to get a fitting for a proper one. Am just finishing rads so will probably wait until my skin has settled. 

 

Regarding exercises, I thought there was no way I’d ever be able to complete the full range, but I’m 11 weeks on and just this week have achieved it! Perseverance does pay off! I’ve been told to keep doing them for a minimum of 2 years after rads, as stopping too soon can cause stiffness and require physio, so I shall do as I’m told! 

 

Good luck with your decision, your gut feel is probably the right one, as a BCN once said to me. Xx

jtb
Member

Re: To reconstruct or not?

Hi KitKat....that's good to hear...and agree it's an individual choice. I don't think it's for me and feel I would cope better with the whole issue. Good luck with your fitting! Let me know how you get on as I will be interested to hear. My boobs are a bit bigger and hope that won't hinder me haha!
Member

Re: To reconstruct or not?

Hi Liz

No reconstruction for me either. It’s definately a very individual choice. But I couldn’t face any more surgery (I’m second time round like you) .
I’m a 34A so to be honest even with no softy it’s not really that noticeable.
That said I have got an appt for a prothethis fitting at 6 weeks post surgery.

Whatever you choose I wish you all the very best!

X x
jtb
Member

Re: To reconstruct or not?

Hi Sally...thanks for all that info - it's really helpful. I think I might be looking for food as well lol. I am working at the moment and hope to get back after recovery. I had BC 18 years ago and stayed off work for a year and I def don't want to go down that route again. I'm gonna go out next week and look for a bra and was hoping there was a good 'comfortable' choice! Please don't stop ''rabbiting' on....it's so helpful and I hope you are doing well, Liz xx
jtb
Member

Re: To reconstruct or not?

Hi Jane...thanx for letting me know about the group on facebook I'll def have a look at that. As the morning goes on I am becoming even more certain I don't want reconstruction and as you say I can always have that option further down the line if I change my mind. It's also good to hear you weren't too uncomfortable after the op. I hope you are doing well and will keep you posted once I have my scans and op. Liz xx
Member

Re: To reconstruct or not?

Morning.

I did initially opt for reconstruction when told I needed a mastectomy but unfortunately 2 days before the operation was told the option was off the tablets to the cancer being more advanced and the skin being involved. The op itself and recovery without reconstruction was very straightforward, pain-free and easy. Upon waking up after my first thought was of food, not pain or discomfort. If you have a drain it's a bit uncomfortable but not painful. I'm also diabetic and the mastectomy wound healed brilliantly well (not so much when they opened it up the 2nd time but that's a different story). My recovery went so well with doing the exercises that I had a full range of movement back pretty quickly and was back at work less than 3 weeks later.

Regards clothing it's a bit more difficult. I found all the post surgery bras I brought uncomfortable if wearing for more than a couple of hours and couldn't get them off quick enough. I'm fairly small chested at the best of times so on colder days can get away with a vest top and jumper. I don't bother most of the time with the softee I was given cos even with a bra on it doesn't look natural. On the hot days I have a few tops with a ruffle round the chest area that means I can go bra-less because they hide that there's anything missing.

Gawd, don't I rabbit on!

Sally
Highlighted
Member

Re: To reconstruct or not?

Good morning. I was 60 at diagnosis and my gut instinct was also not to go for reconstruction mainly because I was anxious about the length of the operation and recovery time.  Three years on I am still happy with my decision and have no regrets.  I wear a prosthesis and dressed look absolutely fine.  When I go for my annual check up the surgeon always offers me reconstruction so you can change your mind any time.  There is a good facebook page, Flat Friends, which offers lots of support and advice to people who don't have reconstruction and is a good place for people to share their feelings.  After the mastectomy I think the best thing is just to take things very gently and do your post surgery exercises so you get full range of movement back in your shoulder and arm.  I was dreading surgery but I woke up from the anaesthetic feeling fine just relieved that it was over.  Good luck with everything and do let us know how you go.  All the best x

Jane

jtb
Member

To reconstruct or not?

Good Morning...ok I was told yesterday that I need a Mastectomy but can't decide whether to have reconstruction or not.  My gut instinct is NOT.  I am a 'young' 62 year old and also diabetic.  My Oncologist has told me to go home and think about it.  Just looking to hear about anyone's experiences and all advice greatly received.......now off to read-up on the Mastectomy itself - any advice or tips for when I come home from hospital to help me cope?  I am feeling strong and positive and have all my friends and family around me and have nicknamed us #teamstrong