Mastectomy advise

[Guest user]

Hi there, Saw the nurse today and to be honest I am feeling like it's all up in the air again. However, I am seeing the surgeon on THursday so have to make a decision by then. My best option with reconstruction is to have skin and muscle taken from my back. This would increase the recovery time, but I do consider myself young and the thought of not having a cleavage (spelling?) is beginning to bother me. However, given that I have secondaries and surgery isn't offered to people in my situation very often, that makes it more difficult. A real trade off between quality and quantity of life, without any certainty to what I could be gaining by having the maestectomy and what I would be giving up with the extra recovery time for a reconstruction. Sorry to ramble, but so many thoughts going through my head at the moment.

Thanks for 'listening'.

Snoogle
x

[Guest user]

Thanks for the info on the website. It's been really helpful. I am seeing the breast cancer nurse today. I think I am almost at a decision.

Thanks to everyone for their advice and support.

Snoogle
x

[Liz_100]

Hi
I had a mastectomy in June this year. I was offered reconstruction but chose not to have it as it meant longer in the operating theatre and a longer recovery time and I don't like hospitals. I was told if I chancge my mind I could have reconstruction some time in the future. I did not get on with the "softie" they gave me at the hospital. It kept riding up and I felt lop sided. I am very happy with the prothesis. I have a light weight amoena one and wear it with pocked bras. I am 55. I feel happy and confident with the way I look. I spent quite a bit of money on a pocketed swimming costume and swimming prothesis so I have taken up swimming too. I do wonder if how I feel is down to my age and if I would feel different if I was younger. I hope this helps. I would like to wish you all the best whatever you decide. Thinking of you.
Liz

[Guest user]

Hi Snoogle,I had a Mastectomy in 2004, reconstruction was mentioned but not really considered, my surgeon wanted the Mx done straight away. I have struggled with the prostheses as its so heavy. Have a large remaining breast, I would need to have reduction first on that one. So never bothered.

I do know its a very personal choice, I had a allergic reaction to dressings, which led to the wound not healing and its a bit of mess to be honest but still it doesn't bother me. I now go out most of the time with out my prostheses, it's noticable because of my large right breast but even so, just why are people looking at my boob anyway!

I hope you can decide on what is best for you, and wish you a speedy recovery.

[kath12]

hi snoogle
can only agree & say it is v personal choice
i had wle & node clearance 4 years ago & recently mastectomy (other side) & another node clearance & chose not to have recon as really always want to have least surgery possible & for me (57, lovely husband, size 34c) not been too trumatic living without a breast so far....must admit i don't spend much time assessing other people's boobs & hope people aren't looking too closely at me plus have taken to wearing more layers so bust line not so prominent!!!
good to hear that you're going in the right direction & good luck
love jk

[pargayan]

Hi Snoogle,
I had a left mx in July 09 and chose not to have reconstruction at the time for a variety of reasons. My remaining boob is a 38E so the prostheses that the clinic gave me is heavy, even though it is one of the ‘lightweight’ amoena ones. Because of this I bought one of the lightweight trulife ones from Nicola Jane, which I use for work with a pocketed bra. I do find it rides up slightly but it cannot escape the pocket and I hoick it down every so often when visiting the loo. If I need to dress up, then I use the amoena one and it provides a really good line under clothes, though as previously mentioned on this site, very low tops are a problem due to it hanging away from the body when leaning forward.

When at home with family I do not wear a bra at all, if I feel like I need support I will wear a support camisole under my tshirt. When walking the dog or nipping to the shops I will often only wear a bra to support my right boob and leave the false one at home. I cannot say that I have noticed anyone looking at me oddly.

Due to being big breasted, the scar is large and only an inch of it has melded together perfectly, the rest has healed ok but with some raised flesh which will fade and become less noticeable.

My husband still loves me and my body, and the loss of a breast has not made any difference to our lives in the bedroom. The tablets I am on are more of a problem, but that is a different story.

I did find a website dedicated to those who have chosen not to have reconstruction, not sure if I came across it on this website or not, but the web address is attached cannot get it to hyperlink.
http://breastfree.org/
There are some photos of women who have had mastectomies and stories to assist those who are trying to make a decision on reconstruction.

I think the decision for reconstruction is a deeply individual one that is strongly affected by how you view yourself in your own body. Some people struggle with the loss and others don’t, only you can make that decision and it is a hard one to make and I feel deeply for you at this difficult time.

I hope this helps you in making your decision and I wish you the best in whichever decision you make.
love R x

[Guest user]

Hi Snoogle, I had a bi-lateral mastectomy last year, and decided not to have reconstruction, the surgeon couldnt do it at the time and he asked me when i went back this year for my check up and I still said no. I know everyone is different, but I just felt I didnt want to go back into hospital for something that I felt wasnt necessary. My husband has been really supportive and agreed with me 100%, and I know for me that I made the right decision. Good luck whichever decision you make. Shirley x

[Jo_BCC]

Hi Snoogle,

I have put for you below the link to the are of the website where you can watch an animation of the various different types of reconstruction which I hope you find useful, I've also put the link to our leaflet on reconstruction.

Animation:
http://www.breastcancercare.org.uk/breast-cancer-breast-health/treatment-side-effects/surgery/recons...

Reconstruction:
http://www.breastcancercare.org.uk/search-results/*/changeTemplate/PublicationDisplay/publicationId/...

Hope this helps, kind regards,
Jo, Facilitator

[Guest user]

Hi there, hope you don't mind me joining your thread. I have secondary breast cancer (liver and bone mets), but have responded so well to chemo, herceptin and hormone treatment that I have been offered maestectomy and node clearance (right side). I also have to decide if I want to have reconstruction. Given my particular circumstances, surgeon has stated he only wants to operate once, so its a now or never decision regarding reconstruction. Given the difference in recovery time between not having and having recon I am thinking about not having reconstruction. I don't really want to spend time recovering from an op when I could be spending that time enjoying what I have left with my family. I know that in an ideal world my family would like me to have recon, but I also know they will support me whatever decision I make. What I would ask, if anyone feels able to share, is that given reading this thread it would appear that some, if not all of you, have decided against recon (at least for now), is how things have been for you and how you have felt about it yourselves. Sorry if that's being a bit personal, but this is a really difficult decision and I didn't know where else to turn. I have a meeting with a breast cancer nurse on Monday to have a look at pictures and discuss the type of recon that the surgeon would be recommending. Thanks for you help, also appreciate if you aren't able to.

Snoogle
x

[Guest user]

hi yea im not to bad been to clinic couple times had some redness and swelling but he seems to think its just normal healing how the new boob i hardly wear mine im starting rads today so bit nervous glad y coping with chemo ok wish i had still having physio for my arm when shes there!! other than that im doing ok how your scar bearing up u doing ok happy new yr laura

[et1]

Your are right Laura, I'm just getting over 2nd dose and my 3rd is due on 8th Jan, which will come round really quickly after the new year. But at least I'll be half way through then. My onc says that I wouldn't need rads as they got good margins, so I'm lucky in that respect. I'm tripple neg through so they can't offer me anything else after chemo apart from three monthly checks. I'm still deciding about reconstruction, but if I do go for it I might wait until 2011 to give my body a good chance to recover first.

[Guest user]

hi et cool well done i hope u get on ok hows the se of chemo going dont them 3 wks soon go my rads start soon so be prepared for them tc

[et1]

I've got fitting for new boob on Thursday, quite looking forward to it. At least it'll take my mind off my rapid hair loss, and second dose of chemo on Friday! I shall sit in the chemo chair with my new boob and wig and pretend I'm normal!!!

[Guest user]

Hi et, laura64 and gardengirl, Hope that you are all getting on well now after the mxs. What stage of treatment are you all at now? I had recon at the time of my mx and now have to take tam for 5 yrs, as one hormonal result was pos. not looking forward to early menopause!!! Still finding tight sensation across scar area and slight discomfort where port is located as it has apparently flipped itself, but luckily the BC nurses can still access port for filling my expander. First fill this Weds! Will keep you posted. Take care everyone. x

[Guest user]

hi yea i hate my fatty bit to thought was just me as big boobs lol how u doing now gd luck with onc i gtg 4 physio fri thank god tc laura

[et1]

Haven't decided on recon yet. it seems way off in the future, I'll see how I feel about things after all the treatment is over. I must admit I hate the flabby bits under my arm though. Did you have your chemo before your op Laura? I have first appoint. with oncologist this Friday. It's all sinking in a bit more now as it feels more real. Let us know how the boob fitting goes, I'm still too sore to even make the appointment yet. I'll stick to the foam one for now!

[Guest user]

hi et thanks just waiting for physio apt at moe be so gd to bable to lift my arm up going for my new boob fitting thurs hopefully plastic one will be lot better than foam one im not sure at moe about recon they said i cld have it in 7 months what about you are u going to have it done have gd day laura x

[et1]

Thanks Laura,

I'm sure rads will be better than chemo for you, you maust be glad to be moving on to the next stage. I hope your cording sorts itself out soon. Keep us posted on how you are doing. I noticed after a bath that I still have one staple left in, so have to go back to hospital to get it removed. The nurse missed it!!!!!

Et

[Guest user]

hi et congrats on results mine were the same im neg on both acounts dont no if this is gd or bad everyone as dif opions my rads due to start on 29 dec no new yr 4 me lol hope your chemo is gd on you i had 3 fec and 2 tax which i went through hell on se where so bad they stopped it early but we are all diff glad im on last treatment be glad to move on had enough now glad your doing well im off to physio sort my cording out have gd weekend laura

[et1]

I got the path report yesterday and it was good news, the
lymph node was clear and they think they got it all, so no more surgery is needed, phew! The cancer was grade 3 and 4cm in size, so I am going to have to have chemo, and am now waiting for appointment to meet the oncologist. The tests came back negitave for hormone receptors but I am still waiting for the HER-2 test result to see if it will respond to herceptin. Although I am not looking forward to chemo I feel relived that the lymph nodes have been saved and am very grateful that a sentinal node biopsy was done instead of having them all removed.
I'm two weeks post op now and don't feel too bad. I've got good mobility in my arm and not too much swelling. The staples are out and the dressing is off. I still feel like I've been kicked in the chest by a donkey and am a bit tired but manage to stay awake during the day now. Still trying to get used to the 'new look' though!

[Guest user]

hi et eww that sounds nasty i was lucky no drains for me my surgeon dont put them in but a pain having to kp going to have them drained ive now got cording to which is painfull but going to see physio so hope will be sorted soon gd luck for your results how r you fealing in yourself im a month down the line now feal ok apart from arm tc laura

[et1]

Had my chest drain out on Sunday, I caught the tube on the end of my bed and lost the vacume, so went to the hospital and they took it out. I have my follow up appointment on Thursday morning, so will have the staples out then which should be more comfortable. Getting anxious about the snb results now. I'll let you all know how it goes.

[Guest user]

Hi et and einaj,

Hope you are both doing ok. I too am getting my path results this Friday (following mast'y 10 days ago)- horrible waiting, isn't it? I was lucky to get my drains out before coming home - hate those things.

Thinking of you in the same boat.

With love,

[Guest user]

Hi et,

Glad stage one is over for you, take it easy. Do you get your results this week?

Take care

Veggie

[Guest user]

Hi et, Had my mx and snb on 2nd Nov, at home now still have my chest drain like yourself. Bit sore at chest drain site, waiting for results, find out this weds. what happens next. Glad you're home and being waited on by your family. Take Care. einaj

[Guest user]

hi et glad y home how r u doing im 3 wks post op now and have had a seroma ive been for my results and glad it was gd news ive got to had rads but only for 3 wks arm still hard to move but i was lucky to not have a drain let us know how y getting on tc laura

[Liz_100]

Hi et
I'm glad you are ok and home. The drain is horrible - but at least your op is over. Try not to think about the results - concentrate of getting stronger. Take care of yourself.
Liz

[et1]

I had mastecomy and lymph node biopsy done last Thursday and am back home recovering. still sore and tired and have chest drain in which is uncomfortable. I'm glad that the op is over now. but apprehensive about getting the pathology report in about ten days time and finding out what will happen next. Still it's nice to put my feet up and be waited on by the family for a change.

[Liz_100]

Hi ET
Just want to wish you all the very best for Thursday. You want to take one day at a time. I had a mastectomy in June. I had the op first thing in the morning. I was able to drink a cup of tea in the afternoon and have something to eat at tea time. I hope you are able to do the same.
Good luck.
Liz

[Guest user]

hi et
sorry your a bit tearfull i know how you feal im also the same today im going to have my fluid drained tomorrow cant wait in so much pain i cld scream i can fully understand what you mean about your teananger i have 21 yr old boys one is great one just thinks now ive had op im ok all i kpt thinking was once op is over cancer will be gone thats what kpt me going im not to bothered about loosing boob i no we are all diff but was in so much pain b4 was so pleased to not have any now where abouts are you from im in east sussex my hospital was great surgeon v good try to kp busy and not to worry to much you will be fine laura xx

[et1]

Thank you veggie and Laura, it does help to hear other womens stories. I'm feeling a bit tearful today, but I'm glad it's going to be quick, I am keeping busy getting everything straight at home and also telling people, as I have only told a few close family up to now, so it's good to be busy and keep my mind off it.

I'll keep posting and let you know how I get on, and I'm grateful for any support. It's only on here that I feel I can be honest about how frightened I am, the rest of the time I'm busy being brave so I don't upset my very tearful, but supportive husband or stroppy teenage daughter who thinks this is all interfearing with her social life too much.

Et

[Guest user]

hi i had mx and node biospy on oct 17th i also was v nervous and i can assure you there is no need to be you will be fine op was over in a hr and was in recovery only a hr in total back into ward within a couple hrs and was out of bed going to loo late eve im suffering a little at moe as i never had drains put in so i had a build up of fluid ans have to have it drained by bc nurse but in all am ok just uncomfy no real pain i was only in for 24 hrs i have also already had chemo had some probs so had to have them first that is the worst part of it i think was very unwell sickness etc but every one is diff im happy to help u through this if you wld like to tc laura xx

[Guest user]

Hi Et,

How are you today? This for me was definately the worst part of the whole journey, the waiting for everything to get started. In my experience though the anticipation is much worse than the reality.

I was diagnosed in May 2007, mastectomy and node clearance in June and I started my chemo in July, about 4 weeks after surgery. Then rads about 5 weeks after the end of chemo. I also had Herceptin and I'm currently on Tamoxifen until 2012, so I've had the whole lot!

Like you I was apprehensive about the mastectomy (I decided not to have reconstruction) When they were changing the dressing I made myself look at the scar and in all honesty it wasn't anywhere near as bad as I thought it would be. I was a bit tearful at times, grieving for what I had lost I suppose but on the whole I was fine with everything. My wonderful husband helped me through it as well as my beautiful little girl, whenever I felt a bit wobbly through chemo I looked at her photo and reminded myself why I was going through all this. You can do it.

I wish you all the very best for Thursday. If I can give you some advice, take all the pain killers that are offered, I didn't have any pain but still took the tablets to keep on top of things. Take a front opening blouse/shirt for coming home, I stupidly had a Tshirt with me and it was a struggle to get it over my head after the op!! The physio should come and see you the day after the op to show you the exercises you should do to get the movement back in your arm. I found them really alarming and thought I'd never be able to do them but I did after a while, just do a little bit at a time, just what you can manage at first and then gradually build up, you'll get there. All I could do 2 days after the op was circle my shoulders but it is important to do something, easy does it though.

Chemo and rads is all do-able, there are plenty of lovely people to help you through it. I found the chemo nurses some of the most wonderful people I have ever met, no worry is too trivial. I think an important thing to remember is that we are all individuals and we all react in different ways to treatment but that there is nearly always a solution to side effects so if you are concerned about anything speak to your breast cancer care nurse and they'll be able to help you.

Also I know that you probably feel overwhelmed at the moment and very frightened but it helped me to take one thing at a time, firstly to focus on the surgery and recovery, then the chemo and so on, I tried not to look forward too much (not very easy at times!!)

If you have any questions at all I'll try my best to help.

Big hug, you can get through this. I'll be thinking of you on Thursday.

Take care

Veggie

[et1]

After being diagnosed last Tuesday, I have seen the surgeon today and am due to have mastectomy on Thursday of this week, together with sentinal node biopsy.

I am very apprehensive and wondered if anyone has any advise/kind words that might help prepare me. I am not able to have a reconstruction at the same time so I will have some adjusting to do to get used to my new body shape.

I am also paniking about the chemo and rads that will follow, how soon after surgery does all that start?

Et