2 lumpectomies now mx! anyone help please

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Devastated, just been to see my surgeon who informed me my second lumpectomy had not worked and they had not got a clear pre cancer margin, totally shocked, was really hoping for some good news.

Having had 16/18 glands infected l was really concerned about the cancer spreading. I have had a bone scan and l am due a CT scan this Thursday, then next Tuesday they will decide on the outcome of the scans to see if l need to have chemo first or just go for the mx.
Totally gloom and doom at the moment, Has anyone had similar.
Sandra xxx

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sandra I am so sorry about your news you must be devestated.

I had one lumpectomy and then had to have a MX as the surgeon told me that my breast was ‘unstable’ and advised a MX - I didn’t want one but I took his advice. He was right and they the other half of my cancer was deep in my breast and the total tumour 9cm!

I too have extensive lymph involvement and it is all a big big worry. You’ve been through the lumpectomys so you know whats to come - surgery wise - that is. The loss of your breast is more difficult to come to terms with I know - but if it gets rid of that nasty cancer out of you then you must go for it there is no other option.

My scans were clear and that was relief to me and once I had them results I felt so much better.

I know for you its waiting again, waiting for scan results and then waiting for surgery - do you have a date yet?

I also know you wanted to start chemo so you could start ‘kicking cancer ass’ but get rid of it first then get strong and get the Chemo to finally kick it into touch - we are all here for you, you know that…
x

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Sandra
I am also sorry to hear your news. Your thoughts must be all over the place. I have had a bi lateral mastectomy and it is alot to deal with but its possible. Like everything to do with this disease somehow you find a way through.
My thoughts are with you x

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Hi Sandra

I am so sorry to hear your news just wanted to let you know I’m thinking of you. I suppost it is better to make sure they get rid of all the cancer than risk leaving anything then get you blasted with chemo to make sure they get it all. I do hope you get good results from scans you certainly deserve some luck and the sooner you get started on your treatment plan the better.

Lots of love Anne xx

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Hi Sandra

So sorry you now have to have a mastectomy. I too had 2 WLE but margins were not clear so had to have a MX with immediate Tram Flap Recon. I chose to have Tram Flap recon as wanted a natural boob as I am big breasted.

The only good that came out of it is I now have a flat tummy and I’m having the nipple done in 2 weeks. Though without a bra I am lopsided but that can be corrected if I choose to have to have another op - not sure about having another op though.

Take care
x

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Sandra, I am so so sorry to read your news. We are all here to help you get though this. I had a mastectomy both times, because I could not have bared going what you have been though.
Take care, love Maria

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Hi Sandra,
I don’t know what to say other than echo what the others have said.
Sorry that you didn’t get the news you so wanted but I am sure that with your support network and your strong personality you will get through this as everyone else manages to get through whatever obstacles are placed in our way.
Keep in touchn here if you need a chat
Hugs from Sue xxx

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2nd try, lost the first one!!
Well what an idiot, so confident today, l decided to go for my appointment by myself…that will teach me! OH has a shop so very difficult, eldest son has already had a lot of time off from my last ops, youngest son just started a new job so is up North for two days. My three close friends work, and while they would have come with me, l thought l would be ok…how wrong was l…Shock horror, still reeling…the bcn wanted to phone my husband, but l said, no l will be ok…got in the car drove 100yds, stopped, phoned OH up in tears…anyway 10mins later he arrived at the hospital…l had a GOOD cry, poor man must wonder what has happened to his strong wife!
OH went back to work, by the time l got home, my eldest son had arrived, so that was good not to be by myself. My youngest was very upset, being stuck up North! said he just want to give his mum a big cuddle, that started me off again!
Ok now what…l had a bone scan last friday, this Thursday 29th l have a CT scan…the doctor said he will speak to the oncologist on Tuesday 4th if the scans are not good!! then they will decide if l should have chemo before the masectomy (anyone heard of that before) I have an appointment for Tuesday 4th, although not sure what time yet, l was too upset to get the appointment, so the bcn said she would get it and send it to me. Said she would phone me tomorrow for a chat, asked if l would like to go in and see her, but l don’t see a lot of point until l get the results.

Saffronseed,Thank you for your support, just wish they had done the mx the first time, damned if you do and damned if you dont!!
Did you think about a recon. or was it a def. No. Not really thought about it,but can you have one before treatment? x

Tilly, bi lateral, yes a LOT to deal with. Thank you so much x

Anne, you are there again with your positive thoughts, Thank you x

Aqua, Tram Flap Recon, yes that sounds good, lovely to have a flat tummy!! by the looks of my tummy l could make a few boobs! OK you left yourself open for this…how big? mine are 36D, so not sure what to do!!Thank you x

Maria,Thank you for your kind words, how right were you to have a mx, wish l had! x

Sue, Another Thank you for your kind words and support, l certainly need them at the moment x

Another question, those that had a recon, are you pleased? did you have it straight away, or do you have to wait until treatment is over?

Those that didn’t, was it because you’d had enough, or other reasons?

Such a rubbish time

Love
Sandra xxx

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Hi Sandra,
I was diagnosed last May had first lumpectomy in June with SNB. I went on to have another two lumpectomies before finally having a mx. After 3 surgeries and a bleed which meant a second op on the same day I was more than happy to have a mx. I couldn’t have immediate recon due to having rads after chemo. I couldn’t even think about recon, just wanted to get the treatment finished first. Luckily between June and Sept I had no further spread and my lymph glands were all clear. First time I have ever been glad of having big boobs, everything seemed to be kept there. I had a total of 11cms ductal and lobular cancer so am so lucky it hadn’t gone to my glands. I am now hoping to have a mx on my good side too.
I’m sorry to hear your news, I know what it feels like to be knocked back everytime you think you are moving forward. Stay strong, there is light at the end of the tunnel and when you move on to your treatment it will fly by. I couldn’t believe how quick chemo went and I am now 3 weeks post rads so hoping to move on to a bit more normality if that is possible!!
Love Jane xx

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Sandra - You fire away, I don’t mind in the least if it helps you to decide which Recon to go for.

I’m 38d though I’m sure my tummy breast looks maybe bigger then my good breast though that may be cos my good breast is about an inch or an inch and half lower than new breast. I reckon the surgeon could have got 2 out of my tummy too!!.

My surgeon said my tummy would make a better breast as it would have been difficult to get same feel and size with an implant. When I had my op the breast felt so heavy! 11 weeks down the line it feels so much like my good breast.

Op was 9 hours and full recovery is 4/5 month. Major op but end result is a natural feel breast and of course a tummy tuck too!

Diep Flap is similar but no muscle is used and hence recovery is quicker.

xx

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Hi Sandra, It must have been awful for you today , particularly being on your own. I am not surprised you were so upset and there’s nothing wrong with feeling that way. As I said its all a pile of sh*t! and none of us deserve this! I am unsure about chemo before Mx, I know some ladies have have this to reduce the size of the tumour and I think its very effective no doubt you will get loads of responses on that.

I pushed for a lumpectomy at first as I wanted to try and conserve my breast - the surgeon wanted to do a Mx straightaway but I talked him round. I knew there was a high chance of me having more surgery but it was a chance I wanted to take - I still don’t regret it as I tried to ‘save’ my breast and did my best for it but it wasn’t to be.

I was informed that a reconstruction at the time of Mx was not an option for me due need to have Rads etc - but to be honest I would not have gone for it anyhow. By then with my lymph node involvement I just wanted the cancer out of me and to move onto Chemo as fast as I could - I know the recovery period if you have a Mx and reconstruction at same time is a lot longer and there can be more complications. My surgeon talked to me about reconstruction further down the road - at the time I didnt want to even think about it… However (only 6 weeks later) I have decided that I want reconstruction and will be actively pursing this. I think i will be stronger both mentally and physically to deal with this further surgery later this year (all being well).

It is a real set back for you and I remember how down I felt when i was told that I needed further surgery (even though I was half expecting it) it came as a shock and I was inconsolable for days…

You sound as if you have a smashing family supporting you - and I am sure friends will rally round too - You are right it is a rubbish time but the support is there for you and you will get through it I promise you! take care xx

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Hi Ladies,
My head is all over the place, starting to settle down a bit, yes what am l thinking about, there is no way l would go for a recon. at this stage, like you Saffronseed, so many lymph nodes, just want to try and get that sorted and the treatment over and done with.
And as you say with radiotherapy they probably wouldn’t do it!
Those words again…one step at a time…will they never leave me…how l would love to skip forward a few treatments…
Had two lovely daughter-in-laws on the phone to me, so very lucky with my family and yes with my friends. My poor 90 year old mum, who is very fit, is having a terrible time at the moment, suffering nearly as much as her much loved daughter!!
Love to you all for you all for your lovely support.
Sandra xxx

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Dear Sandra

All this surgery, terrible, terrible. I have met some ladies with a similar surgical experience to you. I had chemo pre surgery, then my MX and then radiotherapy.

Good luck with the surgery and the treatment.
Best wishes
L x (((((((((((((((((((((hug))))))))))))))))))))))))))))))))))

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Dear Sandra,
I am so glad you have such a lovely family around you. They say surrounding yourself with love is a wonderful remedy.
In the 1990’s my sister had a lumpectomy and 5 years later she was no longer with us. It was then, my husband and I decided unanimously that if I ever had the bad luck to get bc, I would have a mastectomy. I was given the option in 2003, however when the pathology result came back, they found 2 other tumors, not seen on the mammogram and my onc, said I had made the right choice. I lived for 7 years with one breast and was comfortable and happy with my silicone falsy. No one could tell. I used a foam one for swimming. I had relatively big boobs (36 D) and was never particularly fond of them. They have served their purpose, giving pleasure to my husband and feeding my children, so they had a good run !
I say “never say never” But I have never really considered reconstruction, although I would have liked a free tummy tuck ! Immediate reconstruction does not seem to be given as an option where I live, however I was offered one later and declined. Having never had one I am no judge, but when I realized all the implications, I decided not to bother. Now with both off, apart from still feeling a bit sore, I am happy with the result (almost symmetrical !!) and looking forward to getting my second proper falsy.
Take care of yourself
Love Maria

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Sandra - i have only just read this thread from the start and wanted you to know i’m sending you lots of love and tons of hope. i don’t have anything in the way of advice, my experience is different ie small breasted, immediate recon - mx straight off- no lumpectomy, other than to say i’m struck by how supportive your family are and also how well you use the forum to express your feelings - i think that’s really important and will help you find your way through this.

i wish you lots of luck and kind thoughts.

Lynn

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Hi Ladies, Another day, not sure how l feel, lost in my own body trying so hard to get away from it! but that is not going to happen, this is my body and l need to help it along, it has given me many happy years, so who am l to give up on it at the least ‘little’ hiccup in life!! (if only l meant that!) Lol

Hi L, yes l know they do try to save the breast if at all possible, but you cant help thinking…My family are not ready to read books on whatever might be, my sons are very aware, so their view is they know enough! my husband is a bit of a head in the sand bloke, wont talk about what might happen, just wants to stay positive,truth is he is a very frightened man, but it is his way of dealing with it, and at the moment we all have to deal with it in our own way X

Hi Maria,
So very sorry to hear what happened to your sister, 100% agree with you with regards to your mx.
Will have to look into the falsy, only heard of people talking of foam ones! so will have to see if they do silicone ones here. sorry to hear you were never really fond of them! Lol. But as you say they had their uses!! wont know until it happens, but l dont think l will miss mine! as long as l get a good falsy!! Obviously the main thing is we get through this!!!

Hi Lynn,
Thank you for your kind words, yes l find l can say what l feel here,whereas speaking to family and friends l am trying to protect them, not sure why, because with my oh and sons we have all had a good cry and spoke of our emotions, but at 34 and 35 l still try and protect them. And as they said to me “you have made us what we are today, strong and able to cope with life, and as devastating as this is, we will get through this and whatever the outcome, we will be stronger and be there for each other” that started me off!
May be wrong, but l think l read one of your posts when you were starting chemo, saying how upset you would be to lose your hair, hope you have got through that, and purchased a nice wig/scarf
Tried to find the post, but head not right at the moment. So if l got that last bit wrong, please forgive my brain, it is after all only a very small part of ME, as is my bc!
Love to all
Sandra xxx

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Hi Sandra

I really feel for you at the moment. I was on my own at the initial DX like you expecting no problems.The shaking took about 2 days to stop.

You asked about chemo before MX. I was DX with IBC and the standard procedure is chemo first.Over the 8 sessions it was reassuring to actually be able to feel the suspect area reducing.So it was chemo surgery and then rads.

I had a bilateral MX and having had large breasts all my life rather like being able to choose the size of prothesis depending on the occassion.Large for special times and small for normal daytime. There had to be a positive somewhere!! I managed to find comfort in that losing my breast hopefully meant loosing the cancer.

Ask anything you like and lots of love and hugs.

Andie

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Oh Ok Andie, you asked for this…

Is the prothesis heavy? have been told they are.

What are they made of?

Are yours nhs ones, and if so are you happy with them, or would you go for a better one (if there is one) really not looked yet.

How soon after you mx could you wear it? hate the thought of one flat side!

What is the best thing to wear after op, thinking a vest or similar

Did it ride up? l suppose l am saying, how does it stay in place

Do you wear them all the time, or is it more comfortable without when at home?

Do l need to buy a special bra now? if so any suggestions, l looked at the ones in M & S this morning, but was too upset to pick one up and try it on!

Silly woman that l am, because like you l have not got a problem with the breast, just want to be ok!!!

How soon after mx could you lift, drive, do housework!! iron!!!
I found after my lumpectomy and node clearance l could do anything almost straight away, obviously not so fast as l could before, but it was doable, oh the driving l left for 10/14 days, then the bcn said try and see how you go, being on my right side l had no problems with regards to changing gear, had it been on the other side, would have been a bigger problem

Sorry if too many questions

Sandra xxx

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Sandra you have asked all the questions I have wanted to ask but did not dare. Everything you have asked are exactly what has been going through my mind. I was at the hospital today and asked the breast care nurse to show me some prothesis and bras so I would know what to expect. In my trust they give you a Priform softy to take home until the wound is healed enough to move onto the next stage.
On Monday I ordered some tops from a mastectomy magazine and a bra so I would see how they fit and which of my own clothes and bras I could keep. It has taken me about a week from hearing the news to getting to this point. Motivated by feeling sure I am going to have difficulty coping and wanting to minimise this as much as possible. Trying to be as prepared as I can be (which I still sure will not be enough. The questions you asked have helped alot with this.
Have you got a date yet for your operation?

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Hi Tilly,
I find my brain is in overdrive, or it is blank! doesn’t seem to be an in between at the moment. Pleased the questions have helped you.
Oh Mastectomy magazine! the joy, let me know how they are, and perhaps you can let me know the name?
No date for op yet, l have to see the surgeon on Tuesday, then they hopefully will have the results of the bone scan and the ct scan, if clear!!! l will have the mx if not!!! probably be chemo first, seems it is up to the oncologist, who l have not yet met.
So frightened of Tuesday, evertime l go for an appointment l get bad news. Hope the bad news stops for a while, not sure how much more l can take at the moment, seems one thing after another. But we will get there, just going the long way round!!! fingers crossed
Sandra xxx