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Thinking of second mastectomy

35 REPLIES 35
Milo1
Member

Re: Thinking of second mastectomy

Hi LincB, I had a right mastectomy in Jan 2011 with full node clearance, I then lived lop sided for a year which I hated as I have a very painful right shoulder( now diagnosed as arthritis) which made wearing my prostethis very painful, especially as I was a F cup, After discusion with my onc and BN about the risk of bc in my remaining breast and my mental well being I had a left mastectomy in Jan this year, oh the relief, it was like getting a new lease of life I have not had any reconstruction and just go "flat" I do have to be careful about what clothes I wear and people do stare sometimes but I know that it was the right thing for me to do, I wish I had opted for the double op in the first place. Good luck with your decision, make sure you discuss it through with your BN and then make your own mind up.
Sameelee3
Member

Re: Thinking of second mastectomy

Hi there, I have been looking for this type of thread for a while. I had my MX in Feb with an expander , and will have my implant fitted before the end of the year,hopefully. I have been mulling over prophylactic surgery on the other side, and still not sure.
Had a long chat with my BC nurse and she did help me to unpick a few issues. I have a bad left shoulder with very restricted movement on my BCside and am worried that if I had BC in the other breast, I would be at risk from node removal, lymphoedema Etc. I also never ever want to go through chemo gain if I can help it, and know I will be dreading the yearly mammogram.
The BC nurse said that yes, I willavoid the mammograms but reminded me that of course there are no guarantees about never having chemo again. If the cancer comes back as a secondary, then the second mx would have been pointless.
It feels like a big decision, and I think I will go for the final recon on my left first, before I decide. ( my surgeon did say that if I were certain, he could do bothprocedures at the same time)
I suppose I might regret this, especially if I do decide to go ahead and have towait for ages to get it done or have to have a different surgeon.
I know how you feel LincB. it is a tough decision, and you don't want you to dosomething you might regret.
I am glad I went for recon on my left side, however. I have a friend who opted not to, and she is regretting it now, as she finds the concave chest thing difficult.
Will continue to follow other posts here..... Not sure I am any help at all, as am just as woolly about it all!
sameelee3
X

LincB
Member

Re: Thinking of second mastectomy

I have to decide whether or not to have a single mx on the left side which has invasive bc (with axillary node clearance) or a double mx. There is no cancer as such in the right side, but there is lobular neoplasia which they propose to deal with by doing a surgical biopsy and having it analysed. On hearing that I needed one mx my first reaction was that I wanted two. Even if the right side is OK at the moment just with the biopsy I shall still be worried about future risk. Also I don't want to be lopsided and I enjoy going without a bra most of the time. It would somehow seem worse to have one creast than two.I agree with others that although I have enjoyed having my breasts I cannot feel the same way about them since the diagnosis.
The surgeon says he will do a double mx if it is what I really want but I think they are a bit reluctant as they see it as too drastic a procedure. My breast nurse seems to think I could regret it later and of course there is no going back. I am 60 and not interested in any recon. It is awful having to make these decisions and I have to see the surgeon on Wednesday afternoon. When it comes to decision making I tend to make a choice then wish I'd made the other choice but that's just the way I am. I am pleased to know that so many are happy with their double mx. It makes me feel a tiny bit less scared.
Any comments would be most appreciated.

Guest user
Not applicable

Re: Thinking of second mastectomy

Lizcat - I'm so glad you are happy with the op and it finally happened after all that waiting! Like you I'm still so glad I did it, I LOVE not wearing a bra and don't really mind being flat. I haven't got prosthesis yet and don't think I will as my spine hurt with a bra on and the vertebra that was damaged is crunching further down so don't want to stress it out!
I find it amazing that friends don't understand why I'm happy to go boobless, even my bestie... I guess my relationship with boobs has been so altered that I can't ever look at them in the same light!
Hey ho...
lizcat
Member

Re: Thinking of second mastectomy

I'm now almost 2 months on from my 2nd mx and don't regret having it for a single moment. My orig mx was 4 yrs ago and as I had needed chemo first and there was still cancer in the lymph nodes at the time, they said they would rather let me recover from the first mx before considering a 2nd one. Plus the minor detail that I do have bone secondaries!!! Having spent 4 yrs being uneven and thinking that a 2nd mx would even me up and perhaps help my posture and therefore the spread in my spine, I approached the surgeon and he and the onc both agreed to do it as I am stable at the mo. They have classed it as prophylatic and helping phsycologically. I have felt the benefits immediately, have my 2 new prosthesis and will remain eternally grateful to the surgeon for doing such a brill job. It's also nice that I can decide whether to spend the day 'flat' or with a cleavage! Plus my clothes all now fit so much better....If I can help anyone with any questions, just shout! Oh and when the removed breast was tested, the good news was that there was no sign of cancer in it. Liz

wintersocks
Member

Re: Thinking of second mastectomy

Hi Mulligans,
Yes, I too don't feel so well tonight with the throat and feeling generally unwell, I have not slept much. When I went to the unit after the 1st chemo, they gave me difflam mouthwash, but this one is really bad and like you it is causing a cough too, I was told that it is too do with fast turnover of cells in the mouth, as there was no infection then.
My lump is quite large 5cm and it was recommended that I have neo-adjuvant chemo (EC) to try to shrink 1st. After 3 I can still feel it. I am havin an MRI next week to measure,
The next chemo, I have is TAX too.
Re: bi-lat mx, I have heard that the chances of getting recurrance/mets is generally higher than a new dx in the healthy breast.
So, that is something else to consider.
If you would like to pm that is fine to share more knowledge, also I would like to know where you are being treated.
WSX

mulligans
Member

Re: Thinking of second mastectomy

Hi winter socks ,

I had 2 areas which surgeon said were IDC but after pathology report she said that they had joined up by a thread. She said they couldn't see this on all the scans etc which made me think myself that bit was lobular. Was more in shock as now as i have now been classified with large tumour, whe originally i was told they just class the largest of thr two. I see u are doing your chemo first which is probably what i should have done now they know the pathology results as it was quite large. They said the did get clear margins but i dont know how well chemo is working now where i understand they can check u along the way and see if its strinking. Anyway not a lot I can do about that part now. I asked her then about removing other breast and she said would considering doing it at recon time. My healthy breast is so lumpy at times and I'm constantly checking it but onc says its fine just very glandular between apps. I'm not sure about it reducing risk or how do u know you are more at risk from secondaries Keep the faith?
WS I had a mild sore throat after the first one and it has gotten progressively worse, it was going in our house and thought i just couldnt shake it with blood count being low. Have been coughing all night and my body is aching because of it. Have recovered quite quickly after each session but really feeling it now and dreading tax as it will be tougher. Did u get anything for your throat, really didn't know what to take after anti sickness and steroid mix.

wintersocks
Member

Re: Thinking of second mastectomy

Hi All,
Thanks so much for your responses. keepthefaith - I would like to ask you having had one mx, if you decide to have another on the 'healthy breast', is that more about getting 'evened up' than worrying about a new cancer?
Are you thinking of no reconstruction at all? If we go for 2 mx (for me will not do at the same time), that is 2 ops, plus the recon, that is a lot of surgery! - Yes, I have started chemo, 3 lots so far, than another 3 of TAX, then mx. You are obviously qiute a lot further on.
Hi Mulligans, I see you are on chemo 3 too. So we must have started around about the same time. I am glad you are well with minimal se, I have not been too bad either, although after everyone I have a massive sore throat, and I have that now, hence the late post. It is keeping me awake. I am reading from your post that you have yet to have the second mx? but that your surgeon seems to recommend it in your case? I wonder if you have Lobular which (apparently is really hard to detect) as I have. I also have ductal (a mixed dx) in same breast.
Tired1, yes, that is what they have said to me, more or less. I will have to do the face to face thing, but they will not do it at the same time.
For myself, I can see how being lop-sided can be worse than being 'even', but I think predominately my over-riding concern is the future, I have had lumps/bumps/fibroadenomas/biopsies - over the years and now cancer. My breasts have been so troublesome, that if they were not there I would not have to worry anymore.
Thanks All
WS


tired1
Member

Re: Thinking of second mastectomy

I had BC just on the left side and I chose to have the right (healthy) breast removed too, at the same time. My surgeon wanted a face to face chat with me himself and to see the psychologist to confirm I was really ready to do this. This sounds more daunting than it really was - they just wanted to be sure as the hospital does not want to get a reputation for removing healthy tissue. They both agreed with me as I wanted to do it for my own future comfort; I definitely didn't want reconstruction on the left breast and didn't want to have to always wear a prosthesis to look right. They suggested waiting to see how I felt after the initial mx but the thought of any further surgery after all that we have to go through was not something I relished, so I wanted a bilateral mx in one go. They may not have agreed if I said I wanted it to prevent future cancer in the other side - they told me the chance of it recurring in the other side is not at all high for me.
I'm very happy with it so far- I had the op 8 weeks ago. It is definitely the right thing for me. I don't need to wear a bra if I don't want to or can have equally sized prostheses if I want to be shapely, though I haven't sorted this out yet. I still have my softies. I'm half way through rads at the moment and am very glad to be breast free as the thought of wearing a bra would not be great, with the swelling and tenderness.
It will be your choice but I'm very happy with it. I do find myself looking at other women's chests a lot now to see if anyone else is as flat chested as me!

mulligans
Member

Re: Thinking of second mastectomy

Hi ws and keep the faith,
I thought I replied to this earlier but Im on my phone and it's a bit dodgy here it goes.
I asked my surgeon the same. Diagnosed end of Feb, had right mx and node clearance, all went well with that. Opted for recon later as I just wanted to get on but sorted at a time. After pathology report results the surgeon was surprised to find more than she was expecting, had a lump and a hardened area but the had joined up by sneaky cancer they couldn't see on scans etc see what they reckon. It was classed as quite a large lump as a result. We discussed treatment and I said would it be wise to get other breast removed at recon and she said in my case she would. Not that it decreases your chances of reoccurance but because of the sneaky nature of what she found (not a medical term!)
She showed me pics of her recon work on real women before and after and I have to say I was amazed, I don't know what I was expecting to see but they all looked like normal breast to me. Some had missing nipples which I know they can make or u can get a tattoo, don't know much about this bit yet. They were mainly back flap ones I saw. I don't want any saline implants but if we can make something from what I have I'd be happy. Purely from a cosmetic point of view she said my breast size 34b would be very successful but I did see all shapes and sizes. I also have to be realistic about my expectations too but I personally would be happy with something there and I know that there will be a lot of physio and recovery as your back flap muscles are now missing and your body needs to learn to rework itself, will fine out more from others who've been through it. In the meantime I got some great underwire bras with a softie pined in and you wouldnt notice the difference in any of my cliotges even tight ones. Just fighting one fire at a time here, finished 3rd chemo yesterday and not feeling too bad at all today, just some nausea and tiredness last night but so far no major side effects. Best of luck with all your treatments and hope that was some help x

keepthefaith
Member

Re: Thinking of second mastectomy

Hi WS. I haven't spoken to anyone seriously about this yet, but I feel the same way. It seems weird when I am probably at more risk of secondaries than a new primary in the other breast, but I don't mind it so much - what I do mind is being lopsided! I had a left hand Mx in March. I think I would rather have another Mx than a reconstruction on my left side. I think you should go for the counselling and then decide. If that is still what you want to do when the time comes, then why not? The thought of the massive recon op worries me, and the Mx is a much simpler straightforward operation. THe jury is out for me still, I'm going to see how I feel a year or so down the line.
Good luck with whatever decision you make - has your chemo started yet? Hope it goes OK for you and only little SEs.
T x

wintersocks
Member

Re: Thinking of second mastectomy

hi, have just found this post. I am realatively newly diagnosed and have requested removal of my 'healthy' left breast. This has in theory been agreed to when my current mx is done. I will however have to have counselling firstly.
I was hoping to ask all ladies who had a prohylactic mx whether they were happy with thier decision, or whether there was any regrets? or ways of doing things differently?
i know it is ultimately my decision, but it is quite a toughie to decide what to do. my over-riding concern is to reduce the risk of a breast cancer in the other side.
I am having chemo 1st so I have a little time to decide.
Thanks
WS xx

lizcat
Member

Re: Thinking of second mastectomy

Woo-hoo, finally had mx done yesterday!! I say finally as it was pencilled in for Feb 16th but an urgent case cropped up so I was moved to 1st March but then the hospital cancelled all routine surgery for 2 weeks as their A&E is in a mega-mess - along with lots of other areas of admin. I was fuming to say the least but it is now done and sorted and the surgeon has been lovely again. He was furious about the way I had been cancelled too. I'm home now and feel fine.OH looking after me making tea and doing washing-up etc. Just have a drain in and the district nurse will (hopefully) be coming tomorrow to check that and the dressing. Back to see consultant for a check-up in 2 weeks.

Hope you are doing ok.

Liz x

lizcat
Member

Re: Thinking of second mastectomy

Good luck tonight!!! Just go out how you feel most comfortable - if they accept it, then great, and if they don't then they're not worth bothering about. Have fun......

Guest user
Not applicable

Re: Thinking of second mastectomy

Thanks for the update, how frustrating to wait but it will be worth it!
Always best to be on the safe side though.

I'm all fully better and still not wearing prostesis! And feel so liberated, have a good line in scarves and long necklaces going though.

Have a first date tomorrow night, not sure what to do, stay as I am or get out the foam boobs from post surgery?

lizcat
Member

Re: Thinking of second mastectomy

Quick update from me.

Delay in op as I have to have it at my nearest hospital which has ICU rather than the usual one they do breast surgery where there are no emergency facilities. All due to high blood pressure found at pre-op assessment - never normally checked - and they need to be on the safe side with me. Very frustrating but necessary! Surgeon operates at this one every other Thurs and as mine isn't urgent, I won't have it now til 15th March. There was a chance it could have been done today but obviously that slot has been taken by an urgent case as I never had a call back. Hope someone drops out in 2 weeks time and I'll be in like a shot!!!

Liz

lizcat
Member

Re: Thinking of second mastectomy

Glad everything is going as you hoped, iswhiz!

Been to see surgeon this morning and signed the consent forms as my onc had also agreed I could have the mx at a MDT meeting. Given usual warnings plus those that say I will be at higher risk of infection/dvt etc because I have secondaries but they will give me higher doses of drugs to be on safe side and monitor me a bit closer. Have to go to pre-op assessment unit next Monday for their tests and then wait. Apparently the bc unit was very busy with urgent cases before Xmas so they are fully booked til March but if there is a cancellation beforehand, my name is there. If I haven't heard within 2 weeks, then give them a call - certainly will !!! - as they expect a vacancy before mid-Feb. Sooner the better in my book so I can start planning my social life again.....

Will keep you posted.

Liz

Guest user
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Re: Thinking of second mastectomy

Great news on getting the appointment, make sure you keep us posted on how you get on. I'm still so happy and have only worn prothesis twice! To be honest can't be arsed the rest of the time, I have found that wearing flouncy scarves hides the missing boobs to most people and this includes going to the office!

Always hated bra's so not sure why I would wear them now I don't need to!

lizcat
Member

Re: Thinking of second mastectomy

Had a letter today with date for my pre-op appt with surgeon and it is on Jan 16th so that has been dealt with speedily. I imagine the surgery will be the following week if everything is ok. Good news!!

Liz x

lizcat
Member

Re: Thinking of second mastectomy

Was going to search for this post to report back! Iswhiz - I am so pleased you are very happy with your surgery.

Saw the surgeon y'day and he will do mx. He checked what treatment I am on and that my bone mets appear stable. He could see my logic in balancing myself up and agrees it may help my posture and spine. So it was a matter of when did I want it doing - he's away second half of Dec and I'm away mid-Jan for a few days so it looks like it will be towards the end of Jan. I asked about recovery time and when I might be able to fly again (city breaks/short trips away to plan!!) and he said if it all goes ok and as well as last time - that was after 6 months chemo - then about 4 weeks. Good enough for me!!

So it's all systems go now and I'm looking forward to being even again.

Keep letting us know how you are getting on Iswhiz and I'll do the same.

Liz x

Guest user
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Re: Thinking of second mastectomy

So here I am 6 weeks after surgery and yet to wear a bra! I love it... Always hated wearing bra's anyway 🐵

I did shed a tear or two when I finally took the bandage off and saw the scar in the mirror for the first time but that is to be expected and after that I'm happy again!

Friends still find it a bit strange but I just say two boobs - great, one boob - not so, so no boobs best! But they will never fully understand how,after breast cancer your boobs never mean the same to you again.

Hope appointment went well lizcat?

lizcat
Member

Re: Thinking of second mastectomy

Interesting to see this thread again as I have finally got round to ringing the breast care unit here and asked to see the surgeon to discuss mx with him. The nurse did ask on the phone if I was wanting recon too but that's a big no-no for me. I just want to even and balanced and have the option of having a cleavage or not. Have an appointment on 12th Dec. Fingers crossed he won't say anything that will put me off. I'll then be able to plan when to do some mini city breaks and fit the surgery around that.

If anyone has any questions they think may be useful/relevant/something I've not thought of, I would be most grateful to hear from you. I do have bone mets so this surgery is purely a balancing-up exercise!!!

Liz

moser
Member

Re: Thinking of second mastectomy

Sorry, also wanted to say that I have been thinking of a 2nd mx for ages, never seems to be the right time, but I might still go for it as it would be great not to be lopsided any more - like Iswhiz have been like it since 2004 + further surgery on same side after recurrence.

moser
Member

Re: Thinking of second mastectomy

hello Jackie,

Mx scars do take a while to settle down. They will look different depending on the type of mx. Mine was black and blue (and yellow and green) from bruising for quite a long time and even when that was gone was still far from aesthetically pleasing! And yes, my scar was crooked, looked like a depressed mouth! Yours may still be settling, but have you mentioned it at a check up? If it is a real problem there may be something they can do... all the best, Mo x

italia03
Member

Re: Thinking of second mastectomy

Hi There girls
ive got something on my mind and hope i can get some feedback of you lovely ladies . I had my MX on 28th september, basicaly ime worried about the state of my MX site , has any of you ladies got issues like this , it still looks horrible , all lumpy and uneven and very concaved , ime not sure how it should look but i dont think it should look this untidy . it isnt in any way neat surgery and my scar is all over the place.

thanks girls xxxx jackie

Guest user
Not applicable

Re: Thinking of second mastectomy

Sarah

My consultant was very firm with me that it wouldn't reduce any risks with the disease as if it came back in that breast it would be a new DX. I did it purely for symmetry reasons so that I match the side of the MX 7 years ago.

He wouldn't do the op till I got the disease stable and I've had two clear scans since the end of chemo so he sanctioned it.

Also the fact that I was having an op to remove the ovaries anyway meant he was happier as I was having general anesthetic anyway.

Hope that helps?

Guest user
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Re: Thinking of second mastectomy

Hi Iswiz
im in a similar situation at the moment. i am 31 with bone mets and another tumour in remaining breast. up until now my consultant has refused to do mast as he said there was very little evidence to say i would benefit. however 2 week ago he said that its 6 of one and half a dozen of the other and said i can go ahead if thats what i want!! I would be interrested to know what your consultant views are as i really want it done but worry im putting myself at risk for not much benefit. does any one else have any words of wisdom?
thanks
Sarah

Guest user
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Re: Thinking of second mastectomy

Wanted to update you all, had my second MX last week and despite being a bit sore and tired I'm so pleased!

To be even after all this time is great and I can't wait to swim, run, walk etc with no hassle of sports bra's etc.

I suspect that most the time I won't wear prostethis but will go shopping for some anyway, will be fun deciding what size to chose!

Thanks for your words of advice and experience, really helped make the decision.

Issy
x

Guest user
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Re: Thinking of second mastectomy

I had MX on one side in 2009 - I am quite small chested so I have not found it too bad and I bought the swimming prosthesis from Amoena which i wear all the time as it is lighter than the NHS issued one, I can imagine if you are big breasted the weight must be enormous!
I am considering a 2nd MX to reduce the risk of recurrence and will discuss with Dr next week, but does anyone have any idea how likely this is to reduce my risk?

Guest user
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Re: Thinking of second mastectomy

Thanks for all the input! I'm seeking out my breast cancer nurse to chat to her as well.

I'm fairly large chested so really hate how lopsided I am!

I'll let you know if I make the decision and how it's goes.

lizcat
Member

Re: Thinking of second mastectomy

If you could get 2 ops done at the same time that would be a bonus Is !!!

Yep, the bra thing is a pain - wouldn't have believed it was so difficult to get one to fit and look half-decent and not let the prosthesis move too much. I always look lopsided as none of the prosthesis I've had fill in enough as I had a lot of tissue/chest wall taken too.

If I did go ahead, I would be hopeful the same physio services would be there as were first time round. The surgeon would be the same one who did my original op and he was so good I would insist on him doing it again.

Thanks for your input ladies.

Liz

Guest user
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Re: Thinking of second mastectomy

Interesting thread! I had my mx done this Jan, but I am big busted, also TN and after talking to BN last month, she has booked me in to see surgeon in sept to discuss having other one off, felt relieved after talking to her, as worry about reacurrance as been a concern, but also the visual look, can't find bras that fit comfy etc.

elinda45
Member

Re: Thinking of second mastectomy

Hi to you both

I had a double mx done at time of diagnosis and I'm really pleased I did. On one side this was a risk reducing mx. My surgeon was happy to do it for a number of reasons including because I was very big busted and he thought it would have been difficult for me to manage.

Since then I have opted to have very small prostheses so they are lighter and I don't have so much weight on my shoulders. I had shoulder and back problems long before my diagnosis so it made sense to me. I think those problems were in no small part due to the weight of my breasts. Glad I did as I have developed a bigger shoulder problem following all the surgery.

I wear my prostheses when I'm out but at home in the evenings etc I don't and it's great not to have to wear a bra.

The only thing I would say having spoken to physios since is that the body then needs time to shift and readjust. I don't know how this would be for you with the bone mets and whether it would help ease things straight away or would make it a bit more uncomfortable initially.

Perhaps it might be an idea to have a chat with someone on the helpline who has the knowledge and expertise?

Hopefully other women will be able to help too.

take care to you both, Elinda x

Guest user
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Re: Thinking of second mastectomy

The things we do for 'balance'!

I plan to have surgery in Oct anyway to take the ovaries out so was going to ask to add it to that as I'll be there anyway?

Thanks for your comments! Help a lot

x

lizcat
Member

Re: Thinking of second mastectomy

Hi Is,

Snap!! Well, nearly. I was diagnosed 4 yrs ago with bone mets at same time as primary, had chemo, mx and full anc, then rads. Was 42 at time and honestly losing one breast wasn't an issue for me - I thought it was better than the alternative! My spine mets got a bit worse late last year so I had a one-off zap that helped lots. However, I have been thinking over the last few months that perhaps I should ask for a 2nd mx to balance me up. I wondered if it may take a bit of pressure off my spine as I am leaning towards the right-hand side where I still have my breast. I asked at my last checkup which was with the bc nurse and she said she could see the logic and was certain the surgeon would be 'happy' to do it for me. I haven't pursued it any further at the mo as I am too busy enjoying myself but think it may be a winter thing to do as it would take a chunk out of my life with recovery etc. I'm back at onc in Sept too after a routine bone scan so the results from that will obviously have a bearing in case it's got any worse and I need more rads or spine strengthening cement.

It's a dilemma but I'm going to see how things go the next few months and make further enquiries and take it from there.

Liz x

Guest user
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Thinking of second mastectomy

Hi there

I had a left mastectomy back in 2004 (at 29 years old) and have lived lopsided ever since as I could never find the time in my life for reconstruction and the only op available to me was high risk of failure, long recovery time.

I've now got secondary BC and finding ways of making life easier for myself. After struggling with clothing etc for the last 7 years I now hate wearing bras and it's made worse as the vertebra where the bra strap goes has collapsed.

So I was thinking of asking for a second mastectomy then I could go bra free when at home, sport etc and us contact prostethis etc when out and about.

There isn't any disease in the right breast.

Anyone gone through this or have any views?

Is
x