Friday, 28 December 2012


Ok Christmas is over, New Year to come, then that’s the end of the festivities & time to face the upcoming blip in my world….

Thought I would share a few facts.. Now I know I’m very fortunate to have so many people that love & care about me, also that I have the added bonus of private Health Insurance (I am aware that not everyone has this luxury, that allows me choices of who & where I go to have my operation), so I apologise now if I sound ungrateful but…..

Health Insurance is a strange thing – It's one of those things that costs monthly along with your phone, car, gas, electricity, etc.. but hope you never have to use/claim, & like all insurances they try to wriggle out of paying if they can!!!

They take your monthly fees quickly enough, put their prices up annually & expect you to be grateful for their existence when gd forbid you should need them!!

Well for those of you that don’t know, when you go privately firstly you need to get your claim authorised, they check with the Dr then give their verdict on what they are going to pay for, & what they're not.

In my case they will pay for everything to do with the right boob (the diseased one), but nothing for the left, which they say is ‘preventative surgery’.  This cost includes the extra theatre time, extra time the anaesthetist is with me, the surgeons charge for removing & reconstructing the left breast, drugs etc. etc., so thus there will be quite a large shortfall which we will have to self-fund.  (I get stressed listening to this so they have been instructed to speak only to my mum from now on)!

At least they were apologetic, but really, how short sighted, isn’t it better to prevent something from happening before it actually happens!!  Especially when it's a VERY high risk of it actually happening!! Wouldn't it save them money in the long run…. I just don’t get it!!

Anyway rant over.. Packing to do we're off to Brighton for a few days over new year to relax & have some fun with my family & best friends.  Try to have a little of a good time before B DAY !!!!


Friday, 21 December 2012

What a difference a surgeon makes...

2pm 5th December 2012

From the moment we met it felt right, no not my new husband, my new surgeon!!!

This is it.. he's the one, mum & I are nearly crying with happiness. He's youngish, confident, with a strong handshake. He's precise, matter of fact & to the point. He tells me not to worry, he does hundreds of these ops all day, every day, I will have a great result. Ohhhhhh the relief!!!!!!!

I don't need to have my back cut open or the muscle & skin removed. He tells me that's an old fashioned way of performing the procedure, he practised it a couple of times when he first started out, but since then things have & are progressing rapidly when it comes to breast surgery. He will do a skin sparing mastectomy, using a synthetic mesh which is called a 'Strattice Tissue Matrix' which supports the implant instead of muscle. Over time this mesh becomes part of your body & behaves in the same way as your own tissue.

He then shows me photos of before & after - these boobs look great & perfectly symmetrical! He tells me the op takes approx 2 hrs, I should be in for 3 nights & back driving in 10 days! I shouldn't have much pain if any, & very little scaring. "You're not ill so why would I make you feel ill".. I can keep my left nipple woo hoo! & he will use a bit of it to create the right one, then a couple of months later when I'm healed I can have the rest tattooed on. Whilst I'm under he will remove & test one of my lymph nodes to see if any of the cells have spread, I'm sure the other doctor wanted me in overnight the week before to perform that! I can't believe what I'm hearing, such a completely different result to what I'd been told before. All sounds so very simple & easy, I want to hug this man!!

After spending half an hour with him - laughing for most of it (some misunderstanding regarding calf skin, can't be bothered to explain but was funny at the time).. His nurse then took us into her office & discussed everything in detail. She explained exactly what DCIS is & at what stage it is at, we had a long in depth conversation with diagrams. She then wrote down in detail every part of the surgery, from the time I arrive at the hospital, to the time I will go down & pin pointed every part of the procedure. We talked about recovery & my follow up visits, looked at implants & the bra I will have to wear, she was just amazing.

Armed with informative paperwork to read, a date booked in, & blood test for genetic testing done & posted, we were ready to leave.

My whole mindset had changed after just an hour in this hospital, my trust & faith restored in modern medicine, & for once NO TEARS!!

Husband makes me laugh when he compares the surgeons to cars, previous doctors were equal to Daimlers - old fashioned, slow, comfortable, still get from A to B but take the longest slowest route. New Doctor is like a Ferrari - modern, fast, top of the game, always looking around the next corner, racing ahead with confidence!

WOW!!! What a difference a surgeon makes....

I felt so fine that husband & I went furniture shopping that same afternoon & then out for dinner...

Wednesday, 19 December 2012

It's all in the genes.....

12 noon Wednesday 5th December 2012 - London's Harley Street for genetic testing. Then 2pm appointment with new surgeon at The London Breast Clinic.

Genes comprise particles of DNA, packaged in chromosomes. They determine when and where the body makes each of the many thousands of proteins required for life and instruct cells in their growth and function. Humans have 20-30,000 genes. Researchers hunt for disease associated genes has resulted in a number being identified, including some that are pre-determiners for cancer. Better understanding of the function of genes and their contribution to disease is leading to increasingly improved treatments.

Relating to genes; the term indicates something inherited, this can include a pre-disposition to certain diseases.

"Most breast cancer is not caused by genetic changes, however, approximately 10% of patients in the UK have other family members who have had the disease. In these cases genetics can be a part of the cause of the cancer. Two important genes have been identified that when damaged strongly increase the likelihood of developing breast cancer. These genes are called BRCA 1 and BRCA 2. The most current figures show that women with a change in BRCA 1 have a 57% risk of developing breast cancer and a 49% risk of developing ovarian cancer. Women with a change in BRCA 2 have a 40% risk of developing breast cancer and a 18% risk of developing ovarian cancer."

We walk into a Grand office, with a very well educated gentleman, I immediately feel a sense of reassurance wash over me. No tissues on the desk that's a good sign to start with.

We go through my family tree as far back as we can & discover nearly every woman on my dads side has had breast or ovarian cancer, I feel like my body is a ticking time bomb. He tells me that he thinks I definitely have the gene even without being tested & even though he knows I don't feel it, in 'his' eyes I'm actually a very good statistic, once I've had the surgery I will be at a much lower risk than the average woman of ever catching breast cancer. Unfortunately I am still at a greater risk of getting ovarian cancer & they fully advise removing my ovaries in the near future, but that's another blog for another time..

After an in depth conversation covering everything we could think of to ask him, mum & I were satisfied, he suggested having the blood test done at the hospital where my appointment with the new surgeon was and if I had any further questions to call him. An hour has flown by & we leave feeling slightly lighter in step & with lots to talk about over a nice lunch in this posh part of town.. Only my mother can turn a daunting experience into a nice girly day out! !

As we walk towards the café we pass King Edward VII hospital & there is a mass of paparazzi gathered outside. The Duchess of Cambridge Kate Middleton is in there for morning sickness!!! & I thought I was a princess ;) My mum says she feels happier now, I smile at her - she is such a snob, but inside I'm also feeling a little bit better.

Tuesday, 18 December 2012

I'm in charge!!!

8.30pm Monday 3rd december 2012 - 8.30 at night! who has an appointment to see the doctor at night?? no one unless it's an emergency or very serious!!

Please understand I'm trying my hardest not to be negative about any of this or getting my hopes up, I'm just being realistic - It's not good news I'm waiting for, it's just how bad the bad news is.

The results of the 2nd biopsy are in & as we thought the DCIS is too far spread to remove by a lumpectomy so my only other option is the mastectomy. I thank my doctor for everything he has done & tell him that I'm going for a 2nd opinion. I feel bad telling him this but it's my body, my life, my decision & by far the most important one I'm probably ever going to make.

He asks me the reasons why I'm going elsewhere, I tell him I'm not happy with the plastic surgeon he recommended. I assure him it's not the diagnosis I'm questioning, as that proof is there in black & white + lots of pieces of my flesh!! I'm just not happy with the reconstructive surgery that's been offered to me or the surgeon, & I've been recommended to someone else who does both operations himself. He knows him (I should hope so as this guy is rated top 5 in the UK in breast cancer procedures & reconstructive surgery). We are in & out within 10 mins, the quickest appointment by far, he didn't even bother to check/remove my dressing from the previous biopsy, perhaps he forgot.. He then handed me all my notes, & DVDs of my X-rays etc. & wished me luck.

Onwards & upwards, appointment for genetic testing & new surgeon only a day away!

My body... my choice.....

10.10 am Thursday 29th November 2012 mum & I are waiting to see a plastic surgeon to discuss reconstructive surgery. This all seems so surreal, even now as I'm writing.

First thing I notice as we sit down is the same box of tissues positioned on the desk!!! Bloody hell enough with the crying encouragement! Anyway I've made a deal with myself, if I get through today without tears I can have the walnut whip that's sitting in mums fridge.. Pathetic what us women do regarding chocolate!!!

The nurse takes me behind the curtain, I undress & the Dr has a look at the culprits (that's what I've taken to calling them now), & once I'm dressed & back behind the desk he proceeds to tell me the 2 options that are open to me.

First option, that he doesn't like to do because he says the result isn't that good (errrrr great!!!) consists of a mesh netting being used in place of the muscle, and he would need to take fat from my body to make this mesh, but unfortunately I'm too thin!!!!! Hah!!!! Can you believe it first time in my life I'm actually too thin!!! I mean I know this is all so awful & devastating what's happening to me, but if there's any light at the end of the tunnel he just hit it.. Bring on the walnut whips I say, tears or no tears!

2nd option even more horrific than the first but has much better results, his words. "we will try to get them as symmetrical as possible, but they will never be exactly the same". Whaaaaaaaaaaaatttttttttttt!!!!!!!!!!!!!!! He then tells me he will have to cut open my back to remove the muscle & swing it around to the front, this is so the implant can then be placed behind the muscle. So not only will I have the front scars to deal with, I will also have 2 scars on my back + the added pain & recuperating time etc. He will then shave a bit off my rib to keep to use when making me a fake nipple, both nipples have to be removed & skin is also taken from my back to fill in the hole of the missing nipples, once I'm healed 4/5 months later I can have them reconstructed & tattooed on.

I'm obviously looking slightly shocked at all this & can hear my mum asking about the first option again, the one without the back muscle removed & he seems to be dismissing her ever so subtly, but dismissing her none the less. She then asks to see some photos of results to which he says I haven't really got any of those..

All in all I'm not really digging this guy & his awful bedside manner. I'm not stupid I know I'm just a number to him, but surely he must have been taught at medical school how to ensure that a patient places their trust in him & made to feel a little comfortable & relaxed about their forthcoming ordeal!

I can see mums now getting a bit irate & her voice is taking that don't mess with me tone, as she keeps asking the same question & he keeps turning it around to his way of answering & not even sounding polite with it.

I'm thinking lets get out of here & then I must of said something, because next thing I know we're in the car & yes you guessed it I'm in floods!!!

NO WAY NO WAY NO WAY am I having that guy perform any surgery on me, how can that be the only way to do this... There must be another simpler way!!

We need a 2nd opinion!!!!!!!!

Friday, 14 December 2012

This is serious!!!!!!!!!!!!!!!!!

5.45pm Wednesday 28th November 2012 - back at the hospital, mum & husband in tow this time (things must be getting serious)..

"Mrs Leviton I'm afraid the MRI scan shows there are more clusters in your right breast, however your left breast is clear" (whoop-di-doo!! The sarcasm is fleeting & I'm hoping it was only said inside my head!). "I would like to do another scan & possible biopsy to be sure the clusters contain the same DCIS cells. This can be done now & once that's done come back up & see me."

So downstairs we go to the X-ray dept, into the sexy gown, & waiting once again for another radiographer to stab me with a huge plunging needle! Sorry I know I said before I wouldn't go into detail -but I'm feeling just a tad pissed off..

They call me in & I'm lying down on a bed this time, at least not squashed into a cold hard machine. I ask if my husband can come in whilst it's being done (this is more for him to see what I've got to go through rather than moral support - bit mean I know, but hey if I'm gonna suffer then let him actually see with his own eyes the extent. I deserve all the TLC I got coming.. Lol!!

The Dr scans the area & tells me he can't really see much, he needs to do a biopsy, ok I'm ready let's go for it (doesn't he realise it's nearly 9pm & I've got last nights Homelands to watch... Priorities Joanna!!!!)

As I said before it doesn't actually hurt that much, but this time it's a man doing it so he is a lot rougher, & it does hurt a bit, but then that's probably because he's digging around where I'm still bruised from before.

Approx 10 mins & it's all done, I'm a LOT LOT sorer than last time, maybe he didn't give me enough local, or maybe he's just heavy handed. Anyway the look on hubby's face says it all... I am now officially the bravest person he knows, & I think the realisation of how serious this all is has just kicked in.

Up we go back into the office, where the Dr. proceeds to tell me that once he gets the results of this biopsy, he will know for sure whether the cells are able to be cut out (a lumpectomy followed by a course of radiotherapy), or if it's spread all over, then a skin saving mastectomy (removal of breast through surgery) will be the only other option..

He also tells me that because of my family history, I will have to be tested for the BRACA gene & if that comes back positive then I will have to have a double mastectomy. With that he moves the tissue box in my direction (obviously used to giving out this kind of information), & the tears that I have been holding in for the past couple of weeks start to flow.

As I try to gain composure I can't look at my mum or hubby for fear of losing it all together, the Dr proceeds to tell me that he will book relevant test for me & make me an appointment tomorrow morning with the plastic surgeon, blah blah blah blah - not that it's boring, I just think I'd switched off by then & knew my subconscious & my mother, would be taking all the info in. I on the other hand just wanted to get out of there, fall into hubby's arms & sob, which is what consequently happened.

Tuesday, 11 December 2012

OMFG!!!!!!!!!!!!!!!!!!!!! cont.....

Have I got cancer or haven't I got cancer, it's not life threatening but I'm lucky I've found this when I did, the only treatment is surgery, what kind of surgery???????

These words have been swimming around my head for the last week....

10.50 on Sunday 25th November 2012 & I'm once again sat in the hospital waiting room, dressed in one of those very sexy gowns, they tie at the back but are very open. I actually don't mind them, as my back is my best feature, (some girls like tight cleavage revealing tops, me I'm a high neck, backless dress, kinda gal). This time however I have to wear 2 gowns so that one is open at the front - easy access I suppose!

I'm waiting to go in for my MRI scan, this to see how much of the DCIS is actually in my boob & if there is any in the other one as well. Actual definition of DCIS is :- the most common type of non invasive breast cancer -

If anyone has had an MRI scan before they're not the most pleasant of experiences especially if you get a bit claustro.

The nurse calls my name & in I go, firstly I have a needle attached to a drip that's placed in my arm, this has dye that gets flooded into my body so that the scanner knows what to pick up etc. I'm also given a list of albums to choose from to listen to whilst having the scan, I presume to take your mind off the fact your lying face down in a tube with your breasts placed in 2 holes.. Bit like a massage table, the face bit not the boob holes, but then I suppose it depends what type of massage parlours you've been to, but that's a whole other story...

So I decide on some ambient relaxing mood music thinking naively it may help me drift off into oblivion for the half hour, as I'd been up most of the night with the baby & could do with a little shut eye (when you're a mum any chance to have a lie down is grabbed with both hands).

I'm taken into the room, I lie face down in the tube, ear phones on my ears & a panic button placed in my hand. The music starts I think this isn't bad until the machine is turned on. Well all I can say is what a bloody waste of money it is having the cd collection & music system.. You cannot hear a note!!!! Just the loudest, ear bashing, repetitive noise I've ever heard. Sleep??? I spend the next 10 mins laughing to myself thinking I can't believe they give you music, whatever for??? In the end I just closed my eyes & tried to concentrate on blocking out the deafening noise that leaves my ears ringing & gives me a near migraine, and then it's over... 25 mins (I kept very still so it was quicker).

Back in my clothes, back in the car, & my wonderful mum takes me home...

Next appointment Wednesday 5.45pm for the results......

Sunday, 9 December 2012

O M F G!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

DCIS - ductal carcinoma in situ is the earliest possible form of breast cancer and is non-invasive.

Although DCIS needs to be treated, it isn’t a life-threatening condition.

Surgery is the most common treatment.

These words have been swimming around my head for the last week....

If you're sitting comfortably I'll explain...

10.40am on Wednesday 14th November 2012 the day I go to my local GP & ask her to check my left breast. I've felt something there for some time (maybe 6/7 months), something which I wouldn't call a lump exactly, more like a bit of muscle. This could be easily explained as the months previous I had been working out at the Lloyd more than usual, focussing particularly on my upper body, as my wedding a couple of months previous & faaaabulous wedding dress, was all about the arms!

Aaaanyway I've been feeling this lump/muscle for a while & ignoring it, wedding comes & goes (arms looked super toned btw), honeymoon, birthdays, family gatherings, builders in my house, LIFE. I guess you can say life gets in the way..........

The lump/muscle is still there, so eventually I decide to make the appointment. Now please don't think I'm completely naive about this, I've had lots of lumps over the years, always got them checked out either by my GP or a breast specialist, especially after my little boy was born, as hormones change your body in lots of ways, & what with breast feeding etc. I was prone to lumps & bumps in my boobs. So this routine check to the doctors didn't phase me at all, even when she said she'd like to refer me to the breast specialist "just to be safe".

8.30am on Friday 16th November 2012 the day I go to my local private hospital & get the breast specialist to check my boobs!!! Straight away he tells me he wants to send me downstairs for a scan & a mammogram "just to be safe". I'm taken into a changing room given a gown & left sat in the waiting area still thinking it's going to be nothing. They call me in I have the scan, then the mammogram, & then sent back outside to wait. I'm with my mum btw and thank goodness for that, because I was going on my own to the appointment until she insisted on coming with & driving. Word of advice NEVER go to this kind of appointment alone! The radiologist comes out & proceeds to tell me that something has shown up on the scan & they would like to do a biopsy. A what??? really?? now?? Oh... Ok... I won't go into too much detail but it doesn't hurt (you're under local anaesthetic), the idea of what they're doing is scary enough & my mum will tell you, to her surprise I was very brave. By this time I'm starting to get a bit worried, I'm not mentally prepared for this, I was only coming in to be checked over, told all was fine & sent home, now i'm sat here in a hospital gown, being told I'm going to have tissue removed from my breast to check something they've found on the scans...

I've zoned out during the biopsy, I do that by trying to concentrate & focus on relaxing my body & mind, & let me tell you that's bloody hard when 1 of your boobs is squashed in between metal slabs & you're being told not to move at all otherwise they will have to do it again! I won't tell you the next bit, google it if you're not of the faint hearted!!! Plaster in place, back in my clothes - sans bra (it's too painful), sore & slightly dazed we wander back up to the surgeons office.

Please sit down... We've found something in your right breast... Ductal carcinoma in situ...

DCIS the earliest possible form of breast cancer and is non-invasive.

Although DCIS needs to be treated, it isn’t a life-threatening condition.

Surgery is the most common treatment.