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JUST HAD A MASTECTOMY

71 REPLIES 71
Bee
Member

Re: JUST HAD A MASTECTOMY

Thank you Marli for your suggestion, I will certainly ask my BC nurse about a pocket for my swimsuit. I hadn't thought about adding one which seems like an obvious idea! I will have to pay for a wig but the prosthesis will be free. I live in Kent.

 

Best wishes, Bee x

Bee
Member

Re: JUST HAD A MASTECTOMY

Thank you Val, I'll check Asda out. x

marli
Member

Re: JUST HAD A MASTECTOMY

Bee, have you thought of having a pocket put into your ordinary swimsuit. My health authority do this for free- have just had mine done. That way if you already have one you like you can still wear ti. Ask your breast care nurse, mine keeps telling me that there is no need to buy special underwear or swimwear as they will do it. Also provide all prosthesis and wigs for free. I live in Durham. Marli xx

 

newey47
Member

Re: JUST HAD A MASTECTOMY

Asda online do some fantastic bras and so cheap.  I ended up buying from lots of places, but these from Asda were the best fit and certainly best price.  Great quick delivery too.  Val xx

Bee
Member

Re: JUST HAD A MASTECTOMY

Hello Poppj

 

Sorry, only just seen your message! Thank you for the info on underwear etc. I will certainly check out M&S. I am really having difficulty finding a swimsuit and having to rely on ordering one online as there are no decent shops locally and I don't drive. I ordered a couple from Amoena but they were too tight, a shame as they were lovely. I have now got some comfy bras from Amoena and some beautiful scarves, a hat and a swim hat in preparation for the chemo and loss of hair (horrors!). For anyone else reading this post I can recommend Amoena's scarves as they have an elasticated bit at the back to help with coverage.

 

I haven't got a date yet for when my chemo starts but I expect it will be soon. I am still having to have fluid drained regularly from my chest and underarm but my wound has healed nicely.

 

Thanks again,

 

Bee x

poppyj
Member

Re: JUST HAD A MASTECTOMY

Hello Bee

 

I've just logged on and spotted your question re: underwear etc. I found  M&S bras were quite good and not too expensive (you also get the VAT refunded on post-mastectomy bras) also their Memory Foam bras were good. M&S Tummy Control swimsuits were OK on me (LHS mastectomy and LD flap reconstruction so lots of scars) but these swimsuits are cut quite high at the back and nicely draped in front so seemed to disguise everything quite nicely - some pretty colours too. I decided to go for really bright ones hoping the pattern would distract from my battle scars! Good luck with your recovery!

 

Poppyj

Ash66
Member

Re: JUST HAD A MASTECTOMY

Amazing how different the care is in different places. I had the stockings on for surgery and had to keep them on while in the hospital. My bcn said 'you can do what you like once you're home'.

While in hospital I had an injection every night before bed. I think it was heparin. Everyone who'd had surgery got it. x
Triumpet
Member

Re: JUST HAD A MASTECTOMY

Re the TED stocking, I wasn't fitted with them, I had an injection in my stomach with is supposed to stop DVT.

different authorities  I suppose.. I'm now 5 days post op & drain is driving me nuts!! Will be pleased to see that gone.

Have a good day ladies x

 

Caffy
Member

Re: JUST HAD A MASTECTOMY

Re the lovely TED stockings, I was told to wear them for 4 weeks because a cancer diagnosis and an op longer than 3(?) hours increases your risk of dvt by a high margin. My 4 weeks were up last Thursday, the very same day that I had my Mx (margins from mammoplasty not clear). I had a little moan about another 4 weeks of stockings and my consultant explained that of the few patients she has had who have suffered from post surgery DVTs most of them didn't wear their stockings. I'm not going to take the risk, so it's 4 more weeks of long trousers for me! 

Bee
Member

Re: JUST HAD A MASTECTOMY

Many thanks Catokitty. I have just ordered a catalogue. x

catokitty
Member

Re: JUST HAD A MASTECTOMY

Bee - Nicola Jane have lovely mastectomy bras and swimsuits but they are quite pricey. 

Triumpet
Member

Re: JUST HAD A MASTECTOMY

Thanks for your replies. That is exactly how I feel rather be flat than Uniboob! Also reconstruction is a bigger job than removing the other side. More time off work etc.  

i hate it when people presume how I'm going to feel, I've been told at several times in my life that things will catch up with me, hey, not yet they haven't.  

I am a cup 1/2 full person & I think this helps massively in my approach to life.

Bee
Member

Re: JUST HAD A MASTECTOMY

Can anyone recommend websites for mastectomy bras, swimwear, and chemo headwear etc? I have already ordered some bras from Amoena.co.uk and found them really comfortable, so I can recommend them.

 

Bee

Bee
Member

Re: JUST HAD A MASTECTOMY

Hi Triumpet, it's now 2 weeks since my op and I still feel exactly the same about having my other boob removed. I did ask about it but was told that the NHS will only do it if there is a family history of breast cancer or evidence of cancer in the breast. I wasn't offered a psychologist! I get a lot of backache which I feel is partly due to the weight of my boobs so it seems a practical solution - plus the worry of getting cancer in the other boob is taken away.

 

Good luck with your results.

 

Bee x

Bee
Member

Re: JUST HAD A MASTECTOMY

Thanks Nicola, I think I'll stop wearing them from tomorrow then. I'll be glad to chuck them away! Especially after tonight, its so humid and muggy here in Kent. x

Nickhenn
Member

Re: JUST HAD A MASTECTOMY

Hi Triumpet, i think it can be a knee jerk reaction but not always, and i would still prefer to be flat than a uniboober. Good luck with the results appointment. Try and find Flat Friends on face book. They are are group of women in the uk who choose to be flat or to reconstruct, but who will be able to offer advice and support.

regards,

nickhenn

Triumpet
Member

Re: JUST HAD A MASTECTOMY

Hello ladies, I have just had LHMX   on Wednesday, at home now with drain in & district nurse calling today.

I to asked if I could have the other boob removed & have been told it's a knee jerk reaction... Um I don't think so, I to feel my puppies have had their fun & done their  job, what's wrong with retiring them both!!

i have been told I will need to speak to a psychologist etc so we will see.

t will get on FB see how other ladies have done.

I have appt on 28/8 for my results & treatment plan, lucky for me lymph nodes clear.

wishing you all a good day

Susie

Nickhenn
Member

Re: JUST HAD A MASTECTOMY

Hi Bee, the teds are usually on for the time set by the particular surgeon and they all vary. I took mine off after 8 hours. If you are as mobile at 2 weeks, as you were before surgery then you don't really need them. Also if they are poorly fitted and ruck up or cut in, then they are doing more harm than good.
Bee
Member

Re: JUST HAD A MASTECTOMY

Does anyone know exactly how long you are supposed to wear the TED (anti-embolism) socks? I am getting conflicting answers. The nurse after my operation said 6 weeks (taking them off for an hour daily) but the breast care nurse said that 2 weeks should be OK if I was fairly mobile (which I have been).

 

Bee x

Bee
Member

Re: JUST HAD A MASTECTOMY

I had my second lot of fluid drained today - so many shringefuls! I felt better for it though as the pressure was building up. I think the nurse said it normally takes about 3 or 4 times to clear up? I haven't been told yet when my chemo starts but I paid more attention today when she explained what would happen - when I was initially told I was to have it, it all started going over my head.

 

It's encouraging to hear about the cold cap. My nurse did mention it and I think I will definitely have a go if there's any chance of stopping my hair falling out. If it does fall out, then I will have to get some nice scarves and look like an old hippy (I'm 60 now) - perhaps I could change my whole image! It least we can have a little laugh to lessen the stress and worry.

 

Thinking of you, and everyone else on this thread.

 

Love Bee x

marli
Member

Re: JUST HAD A MASTECTOMY

Oh Nichola , please don't think like that. This is my second time and I have been so well cared for by my Onc team. Have had some hiccups along the way, such as the herceptin affecting my heart and being suspended . They have treated the heart and I re-start my treatment next week so will not be done until February 2016 ( started Christmas Eve - where has the year gone) Good luck and just keep posting.  Marli xx

Nickhenn
Member

Re: JUST HAD A MASTECTOMY

I will certainly ask, if and when I come to it. The not knowing what is ahead of me is the worst part. Thoughts of, is this gonna be ok? are mixed with when will i die? and I have no option but wait for my disinterested breast care team to see fit to communicate with me! The only possitive part of being told that i will need further treatment will be that I move to the oncology team, who are well regarded 😏

Nichola x

marli
Member

Re: JUST HAD A MASTECTOMY

Nichola - is there any possibility of using the cold cap. I know that lsoing the hair can be the worst part of all of this. I also realise that it is not suitable for all chemotherapy treatments so it is worth asking.  Marli x

Nickhenn
Member

Re: JUST HAD A MASTECTOMY

Thanks Marli,

i am dreading losing my hair as I cannot imagine working and dealing with the public with no hair. Hey ho, will just have to face each hurdle as it comes. At least my local oncology team has a good reputation, so hopefully that experience will be more supportive.

kind regards, 

nichola

marli
Member

Re: JUST HAD A MASTECTOMY

Gosh , some of you are really having a difficult time with your health care teams. Makes those of us who have had a good experience very thankful. But as has been said this Forum really does give such wonderful support and can fill in the gaps.

Taking about chemotherapy and losing hair. This is not necessarily the case. Six years ago I lost all of my hair when I had EC. This time I had taxotere and used the cold cap and have kept all of my hair. It did thin a little but I really think that keeping helped keep my spirits. If your unit can offer it I do encourage you to try it. My thought was that 6 days of discomfort were better than 6 months without my hair and it was nowhere as bad as I thought it was going to be.

Good Luck all. xx

Nickhenn
Member

Re: JUST HAD A MASTECTOMY

Gosh Bee, it sounds like you are in a healthy, positive frame of mind, well done and good luck with the chemo.

I also dread chemo, but 1 round sounds do-able doesnt it. 😉

I saw my GP yesterday and i was in a right state emotionally. He explained that the pathology results often take more than 2 weeks and so not to worry. we both agree that my breastcare units' poor communication style has had a very negative impact on me. Only 5 more days of limbo land for me now (hopefully). Keep me updated please 😀

Regards

nichola x

Bee
Member

Re: JUST HAD A MASTECTOMY

That's really bad that they have mislaid your samples.

 

I had my follow-up appointment this morning and I feel fairly confident that the cancer may have been caught in time - but I am not out of the woods yet.

 

The good thing is that the tumour in my breast was not 48mm as was first thought but only 8mm but was surrounded by lots of pre-cancerous cells all of which were removed. A very small amount of cancer was found in the first lymph node and an even smaller bit in the second node (the nodes run linearly) and they removed all 19 of them so it looks like they stopped the cancer progressing by this route. The cancer can still spread via the bloodstream but the lymphatic system is the more common route and to make sure no cells have escaped I will [unfortunately, but necessary] be having a course of chemotherapy. This feels me with dread, especially as I will temporarily loose all my hair, but it has to be done.

 

So, a day at a time. I won't be starting chemo immediately as my wounds have to settle down and once there is no more fluids to be drained.

 

I do hope they don't keep you waiting too long and will watch for your update. Keep positive.

 

Bee xx

Nickhenn
Member

Re: JUST HAD A MASTECTOMY

Good luck today.
My appointment has been cancelled as they have misplaced my pathology samples
#hadenoughnow
jillybee
Member

Re: JUST HAD A MASTECTOMY

Nickhenn....I too,was a nurse.You can be quite observant while lying there,I will add,the HCAs were just amazing.....some nurses were,some not so.I used to think I would not like to do a shift with some of them.My BCN's are lovely,as is my surgeon.When I had my DIEP, in a different hospital,the BCN was part of the team in the bay........oh,she was soooooooo busy.....had so much to do......just too much,told everyone she had to write notes in her coffee break.....not good practice.

i continue to have seroma,a year down the line,now waiting for my 12th op in last 2 years.8 were for implants,in and out,then DIEP and a further 2 opening me up to try and resolve it.......am on the lymphoedema page,as " not lymphoedema ......but"

feel so much on my own,but LOVE THIS FORUM.....you lot are great..... Gentle hugs.

Bee
Member

Re: JUST HAD A MASTECTOMY

Hi again Nick,

 

My appointment tomorrow (18th) is at Medway Maritime Hospital, Kent. I won't be at the same one as you but I'll be thinking of you.

 

I had quite a lot of fluid drained this morning and feel a lot more comfortable now. Having more drained on Thursday to make sure I'll be OK over the weekend.

 

I am not on Facebook but I'll certainly take a lot at that site, thank you.

 

Everything crossed for us both. xx

Nickhenn
Member

Re: JUST HAD A MASTECTOMY

Hi Bee,
It sounds like you and an even worse experience than I did, and I am sorry.
My appointment is on the 18th At PHT in west Devon, will i see you there???
i am happy to buddy with you, I hate the fact that you feel alone. i have joined Flat Friends on facebook which is a good site for support and information.
Keep up with the exercises and the pain relief. Good luck on Tuesday, I hope that we both have good news xx
Mags2
Member

Re: JUST HAD A MASTECTOMY

Hi Bee 

what a nightmare for you sorry to see you had such a bad time. After the mess up with my surgery date the breast care was very helpful. Do ring up and get it drained I had mine done four times before it settled down. Your very brave considering double mastectomy. I am just considering a reduction on other breast because I am e cup and quite saggy as I am also in my 60's. Come back and tell us all how you get on good luck. Mags

Bee
Member

Re: JUST HAD A MASTECTOMY

Hi Nick,

I also feel let down by the BC team. I found out that I was to have a mastectomy and full lymph node clearance when I was phoned by one of the Breast Care nurses. She apologised that I hadn't been properly informed about my cancer during my appointment! You can imagine how I felt. I was at home alone and went into meltdown. I didn't see either of the nurses on the ward after my surgery. I became really weepy during the second evening of my stay in hospital and they had to find an on-duty breast surgeon to come and see me and reassure me/answer some questions. A nurse eventually turned up the following morning. I am now at home and worrying about the swellings getting bigger on my chest and under my arm. I think I'll ring the team tomorrow a I don't know how long you are supposed to let it go before it should be drained. My diaphram/back is starting to hurt too which must be the pressure.

 

I too share your feelings about wanting the other boob off. I don't want to have reconstruction as I don't see the point of having another boob created to match one that is very much passed its sell by date! (I am 60). I am thinking of asking my surgeon about removing it too - even if it is done privately. I would then be happy to live with 2 lightweight 'comfies' rather than heavier prosthetics which would reduce the problems I have with backaches. I am seeing her next Tues (18th) August when I have my follow-up appointment to see what the future holds for me. Hopefully good news.

 

Best wishes, Bee

Nickhenn
Member

Re: JUST HAD A MASTECTOMY

Thank you Ali, i will take a look 😀
Nickhenn
Member

Re: JUST HAD A MASTECTOMY

Thank you Jane
Ali1962
Member

Re: JUST HAD A MASTECTOMY

Hi Nick,

 

I'm sorry you had such a bad experience and I know what you mean about a production line - although my team have been supportive and I have no complaints.

 

It does get better - I found the 4 weeks after surgery very tough both emotionally and physically. Especially the wait for a decision on chemo (luckily I didn't need it).I'm now 3 months on and almost back to normal (minus my left boob!).I was surprised how quickly I got used to only having one. So give yourself time and be kind to yourself.

 

I can also recommend Flat Friends as a great place for support and advice.

catokitty
Member

Re: JUST HAD A MASTECTOMY

Hi I am so sorry you have had such a miserable experience. I am a uniboober too and  I just wanted to let you know that there is a facebook group for ladies who have had mastectomy without reconstruction.  Some of the people in the group have been successful in getting mastectomy on the other side later on although it can be a fight.  Some surgeons seem to be more sympathetic than others.   The group is Flat Friends UK.   There is lots of support and friendship there.    Good luck with your results.  I managed to avoid chemo and have got used to being lop sided.  My scar settled quite quickly but it is a permanement reminder.   All the best

Jane

Nickhenn
Member

Re: JUST HAD A MASTECTOMY

Hi Jojo,

I am sorry that you have had a negative surgical experience. As a nurse myself, I know what care to provide to patients and I know that your experience would have left your nurse on the ward feeling very dissatisfied.

I had my mastectomy on the 3rd of august and my experience was also negative. I have experienced a lack of compassion and empathy from 95% of the breast care team and was sent home 15 hours after my surgery (which i am glad about as i dont like being a patient). As i dont have a positive relationship with the breast care team I feel completely alone on this journey, except for reading this forum. My son has aspergers and does not handle anxiety well, so all of my effort goes into being the normal mum at home, which leaves me with no opportunity to talk about my feelings to friends and family who are supporting me. I hate having just one breast and part of me wishes that they had found cancer in both breasts as i would rather be flat chested! I know that this is a selfish thought, but i feel so self conscious about my uniboob. I hope that i am not alone in these thoughts and that it will get better. I have another week to wait to see the team about the tissue results and any further treatment required, I am crossing everything that I wont need chemo. Has anyone ever successfully requested a mastectomy of a healthy breast? I know my breast team will not engage with me in discussion about reconstruction or how i look and feel, because they have already demonstrated to me that i am just part of the production line, and they wish to move me along with the other patients and get me through the system. It was not always like this i can assure you, my local hospital had a wonderful breastcare team who were loved by their patients, and who gave their all. I think the business agenda of the modern NHS has destroyed the goodwill of the staff 😐

Sorry to vent, 

nick x

MadAnge
Member

Re: JUST HAD A MASTECTOMY

Hope your appointment goes ok. I am having a delayed diep flap they said 18 months or so down the line. Hope you are not too sore xxx
Scarab_196
Member

Re: JUST HAD A MASTECTOMY

It's strange isn't it - I have the hip to hip scar, relocated tummy button scar, breast scars, and yet the one I dislike the most is the lymph node biopsy scar.  Hip to hip wins hands down for pain though!

 

Pleased to hear your are being well supported Ange.  I have just received an appointment from the Breast Unit for tomorrow morning so I will see what happens. 

 

Take care x

MadAnge
Member

Re: JUST HAD A MASTECTOMY

I have just read your other comments my BCN has always been contactable and I discussed things with her as well as my consultant. I have seen both since my op and a physio and already have my results appointment and my follow up op appointment. I can't fault the support I have been given. It's a shame some other hospitals have not been as supportive xxx
MadAnge
Member

Re: JUST HAD A MASTECTOMY

Hi ladies I had my masectomy on Tuesday. I was left home on Wednesday had no pain and then on Saturday it started to hurt so am now taking painkillers. Main pain in under my arm where they did snb. I am seeing the breast care nurses tomorrow so it will be interesting to see what they think. I think the thought is often scarier than the actual doing xxx
Scarab_196
Member

Re: JUST HAD A MASTECTOMY

Hi Jillybee, thanks for your reply.

 

I have double-checked and I didn't receive a booklet about DIEP from the hospital (I have a ring binder set aside for 'cancer-stuff'!).  I was given a leaflet of exercises to do after the SLN biopsy surgery and I decided to do these after the mx, much to the horror of the nurse I saw at the dressings clinic who insisted I shouldn't be doing any exercises! 

 

But I have found I can relate to my plastic surgeon better than the breast surgeon so I have asked if he can do the next phase of surgery, and any others if I am unhappy with the results and he has agreed.  I think after so many appointments pre-mx it just feels weird to have nothing for 8 weeks post-surgery.

 

I know it will take a while for everything to settle (I am not noted for my patience!), it is great to know that a year on you are doing well.  Look after yourself x

jillybee
Member

Re: JUST HAD A MASTECTOMY

My BCN ar marvellous,just in the background.Yours scarab sounds very inexperienced.I had a DIEP last year,followed up with Physio,advice and dressings clinic.The BCN never contacted me,was not expecting that....however,end of telephone if needed.Did you not receive a booklet from the hospital about your DIEP. and the aftercare?
I know what you mean though by feeling a bit lost.I had complications,and I felt I had been discarded by the plastics team.Were commissioned to do the operation,and then that was it.i felt I was nuisance.I asked my GP TO me back to my surgeon at the local hospital...I was under her for mastectomy and subsequent failed implants....felt loads better as soon as I saw her.It will work out.I had my surgery a year ago,in the very hot weather,and of course,I was very warm,with all those dressings etc.....take care ☺️
Mags2
Member

Re: JUST HAD A MASTECTOMY

Hi Joyce that's reassuring to know. Did you have pain in your breastbone above the seroma? It's hard to know what is normal and what is not.
joyce11
Member

Re: JUST HAD A MASTECTOMY

Hi Mags2 I had my seroma drained on 8 occasions and it did not seem to affect the healing. Each tme it got less and always felt more comfortable so I would say if the offer is there then go with it. Some NHS trusts don't like draining but many do so defintiely go with it don't suffer unnecessarily.

Scarab_196
Member

Re: JUST HAD A MASTECTOMY

Hi ladies - just wanted to share my experience so far, I agree the care we receive does differ depending on where we live (I am in Yorkshire).

 

I found a lump back in March, after several different types of biopsies I was infomed that I had extensive DCIS, cysts, papilloma and calcification in my right breast. I was told that the only option for me was mastectomy, which I found a struggle to come to terms with (those little white specks on the mammogram look so innocuous, it was hard to believe that there was no other treatment!).

 

My BCN was all over me for the first 2 weeks after diagnosis, basically wanting to know what surgery I was going to choose. I eventually decided on mx with immediate DIEP reconstruction. Since this point I have had no contact whatsoever from my BCN, I have been through SLN biopsy surgery (end of May), mx and recon (end of June), urgent drainage of abdominal seroma (last week). I wouldn’t have found it so annoying if it wasn’t for the fact that, on our first encounter when I received my diagnosis, she told me that she ‘would be with me every step of the way and we would get to know each other really well’. Why say this if it wasn’t going to happen? I didn’t want her to be my new BFF or anything (!) but just an honest explanation of what level of support was available would have been appreciated.

 

I am also surprised at the lack of ‘aftercare’ following surgery – I wasn’t seen by a physio, I had no advice regarding lifting/stretching, what I can/can’t do, no advice re suitable underwire (apart from to avoid underwired bras), and after one appointment at the dressings clinic I was told I would see my surgeon in 2 months time. I am feeling a little bit ‘lost’!  My treatment/care is split between the Breast Unit and the Plastics Department and I’m wondering if that’s why everything seems a bit disjointed?  Has anyone else experienced this? 

 

This forum and website has been so useful as a source of information! 

 

 

 

Mags2
Member

Re: JUST HAD A MASTECTOMY

Hi lafies everyone on here seems to have different experiences according to where you live. Complaining sounds easy but you don't have the energy or inclination just after surgery. Can anyone tell me how long the tightness and pain lasts or is this different for everybody. I am 3 weeks post op and had to be drained 3 times up to now. My bc nurse is really helpful saying to ring up if I feel really uncomfortable and she will drain again but I don't think they like to do it as it stops the healing?
Dawn1
Member

Re: JUST HAD A MASTECTOMY

Jojo...I was just shocked at your lack of treatment..
I do think you should complain, for the sake if other women...
I have got a couple of best practice points also not for my surgeon she was cool...My breast care nurse, she put me in a very difficult position and I do not want anyone to go through what I did because of her negligence...
Lucky post op I have got a different BC nurse who is on the ball...But belive me when I say I am going to make sure all women are treated correctly from now on....
Complaints are quite negative, but I do think you should complain....
I hope you are ok xxxxx
Bazookas
Member

Re: JUST HAD A MASTECTOMY

Jojo - I just had my 4th lot of fluid drained from my mx site. My mx was on June 15th. Today there was only a tiny amount of fluid and I very probably don't need to have it done again (each time it's been less and less). But even a tiny amount of fluid causes a lot of pain as it pushes on the scar. I think you need to get in touch with your BCN or the nurses at the hospital you were operated on to see if they can organise it. Good luck
Baz x