Tuesday, 30 January 2018

Getting What I Want

Today we headed back to the hospital to meet the new consultant. We waited as usual but today I didn't have the nervous feeling in my tummy. I was back in fighting mode.

"Leanne Nash"

My breast nurse calls, I confirm my details and Chris and I head in. Mr M introduces himself, shakes our hands. "I know you don't know me," he says, "but I know everything about you and your journey. I am part of the MDT (multi disciplinary team) where we discuss your case each week. I know that you have had a pretty rough journey so far and things just keep getting worse for you." He explains that Tracy my breast nurse has advised that since the very start I had wanted a bilateral (two boobs) mastectomy then goes onto explain he is willing to listen but there are procedures that would need to be followed.

"Actually," I say. "I have done a bit of a 360 on that for now." I explain how I've researched A LOT and actually I am willing to go down the silicone route initially and see how it goes. I have already been referred to the psychologist about the risk reducing surgery but it is definitely the route I want to go down eventually.  He agrees that I should have the diseased beast done first because if I hate the cosmetic result and I've chosen to remove my 'healthy' breast then I may regret it forever.

I run through my questions and he is straight to the point answering every one with complete raw honesty. He looks me in the eye permanently, I try and do the same but that always makes me feel uneasy - like I'm in some kind of non blinking staring competition! He seems blunt and at first I don't know if I love him or hate him!

I explain how I am completely 100% convinced there is something going on in my right breast. He says he gets it, my instincts have been completely correct throughout and that combined with the false 'clear' ultrasound and mammogram on the left breast, he would feel the same. I ask about an MRI. He tells me he believes it's unnecessary. Chris asks again "Can it be done just to confirm? Otherwise Leanne will always be in a constant state of panic about it."

"Yes, I'd be happy to refer you just for piece of mind."

Relief.

Chris then points out that I have metal work in my wrist so can I even have an MRI anyway?! Good question. Mr H doesn't know but he'll find out. I'm told that MRI scans can usually show a false positive result so having the scan would potentially mean the operation booked for 8th February may need to be postponed.

I look at Mr H but he's picked up his mobile and appears to be texting! What the hell!? No wait, he's calling someone - the radiology team. He explains my diagnosis, that I need an MRI but I have the plate in my wrist. He asks me dates from that op. Then I hear "Great news, thanks."

Wow, this guy gets shit done!! Any other doctor would have dictated a letter, had his secretary mail it over and Id have waited a week to find out if I could even have the scan. It was at that moment I decided I really liked the guy. He also agreed to recommend me for gene testing too. Brilliant.

He lets me take away a copy of my histology report and my nurse runs me through everything from the last surgery properly. She tells me that I am completely within my rights to decide which surgeon I want to perform my mastectomy. Chris asks who she would choose and she eyeballs the door that we have come from.I tell her I want him to do it - Mr M - definitely.

I leave the hospital for the first time feeling confident. Finally we're getting somewhere.

By the time we get home the phone is ringing. It's my breast nurse - she needs to know the start date of my last period. Luckily I track my dates on the Clue app on my phone so I tell her exactly when it was - 18th January. She lets out a sigh and says she'll come back to me.

By 4pm the radiologist has called. They can fit me in on Saturday morning. That was fast!

Friday, 26 January 2018

Decisions

So having left my last appointment yesterday feeling very upset and angry I decided to go about researching everything myself.

At this point I am adamant I still want a double (bilateral) mastectomy with DIEP flap reconstruction. DIEP reconstruction is where a flap of skin and fat (no muscle) is taken from the tummy area and used to form a new boob. The skin and fat are taken from between the belly button and the groin along with the artery and veins. It is called DIEP because Deep blood vessels called the Inferior Epigastric Perforators are used.

There are so many other different flap options but this is the one I wanted because it only takes fat and skin, not muscle. The back flap (LD) operation that MR H had offered me would use muscle and the thought of that just made me feel sick. Besides,I defo had enough fat to make a pair of GG's on my tummy!

I joined a few faceboook groups for women suffering with breast cancer and asked lots of different questions.
I called Macmillan and asked them some questions too -mainly about DIEP flap surgery. So here's what I learnt:

- Unless you have the BRAC gene you are unlikely to be offered a bilateral mastectomy in the UK if only one breast is affected but you can fight for it.
- If you choose to fight for a bilateral mastectomy you will first need to be referred to a psychologist - likely delaying your operation.
- Gene testing on the NHS involves your consultant writing a letter to the lab recommending you for testing. They may not accept you if you do not meet the criteria.
- In the US you are automatically offered both a bilateral mastectomy and a hysterectomy if you have the gene.
- When you have radiotherapy it tightens your skin so any reconstruction will be affected and it's likely that further surgery will be needed.
- Not all reconstruction operations are available at all hospitals. I would need to be referred to another if I want to have the DIEP.
- You can only have DIEP flap surgery once. So if you have a unilateral mastectomy (just one boob) and you need another later down the line then you cannot have anymore tissue taken from your tummy.

So where do I stand now? Yesterday was horrendous but I couldn't just leave it at that. I'd have to get my own answers.

Having asked advice in many discussion groups, spoken to Macmillan team on the phone (who were absolutely fantastic) and having done my own research including contacting private hospitals for advice, I have decided that I am willing to run with the unilateral mastectomy with the expander and silicone implant. I will await the result of the histology and if  Im happy with the result of the implant and once any additional treatment is complete THEN I will proceed to have the risk reducing surgery on the right.

For peace of mind I want to request an MRI to be completely sure that there is no disease on the right and I also want to push for the genetic testing to see the risk for me and for my daughter in years to come.

I call my breast nurse and request an appointment with a different consultant - not Mr H. She agrees to book me in..

Two hours later I'm happy, I have an appointment on Tuesday to discuss everything, this time with the hospitals Lead Clinician for Breast Services.

I have a list of questions at the ready!


Thursday, 25 January 2018

Central Excision Results Day

Today was the worst appointment of my journey so far. Not because of the news or the results, just because I was really unhappy with the way I was treated.

As usual I felt sick in the pit of my stomach as we traveled to the hospital. The waiting room is packed, we take the last two seats. Everyone looks so desperate in here. I scan the room and hope that everyone else is just there for scans and their journey can end today with a clear result.

We wait anxiously for over an hour in the waiting room. My heart palpitating at a whole new level. I cross my fingers as I wait. I pray that the margins have come back clear and no more surgery is required.

"Leanne Nash"

Oh god it's time. The nurse asks for my date of birth and I real it off as usual. My whole bosy is pulsing with nerves.

When I enter the room I'm surprised that my regular consultant, Mrs S is away and Tracy my regular breast nurse isn't there either. Mr H introduces himself by name, not title. There's something I dislike about him but I cant put my finger on it. He asks me if I've had any pain and I explain how I've been feeling. "Right, first things first, lets take a look - is that ok?" I head behind the curtain and do the standard top half strip. Gown on.

He looks at the scar, says it's healing well. Then asks if he can have a look at my right breast. I agree. He's happy that they are looking similar in size. "Ok, get dressed." I feel calmer, maybe it's good news if he's checking the size match - hopefully no more surgery.

I put my clothes back on and sit back down.

"So we have the results back from your central excision. There was DCIS found in the margins so you will need to have a mastectomy with immediate reconstruction." He refers to the DCIS as pre-cancer and I feel anger in the pit of my tummy.

Listen mate, I think to myself, I can tell you this is NOT pre-cancer. My lovely Macmillan nurse has said the same. It is very much breast cancer, I'm just 'lucky' it has been caught early enough for it not to have spread. I think back to the pre-cancerous cells that were found on a regular smear test - I wasn't told I needed a hysterectomy was I?? If it's not cancer then why the actual hell are you proposing to chop my boob off!?

He continues... "We will insert an expander first then later replace with silicone  I can do that for you on 8th February. Now, it wont look the same as before, it wont feel the same as before but we hope to give you a fair result. Any questions?"

Fair? What the hell is that supposed to mean? None of this is fair.

I nodded as he spoke but inside I was dying. I had hoped with all my heart that it would not come to this. I asked him about the margins and he explained that all edges bar one were positive and the one clear margin was only 1mm.

All along, deep down, I've known it would come to this... a mastectomy. And having had this in the back of my head, I had made a decision that when/if it did happen,  I would like to opt for a bilateral mastectomy. Take both away. I'd said that backin December as soon as I got the initial diagnosis. If only I'd pushed for it.

I tell him I want to have a double mastectomy rather than just the left. He dismisses me, tells me that it's not an option. They would never remove a healthy breast. I explain that I am still worried there is something wrong in the right side. He dismisses me again and tells me that all scans were clear. I remind him the scans were clear on the diseased breast too. "Yes, but you had the discharge and you don't on the right."

IT'S MY GODDAMN BODY!!!!! WHY CANT I JUST MAKE MY OWN DECISION?!

Soon enough we are exiting the room. My blood is boiling. My head is all over the place and we are lead by the nurse to what I now call 'the room of doom' - a small private room where anyone newly diagnosed is taken to so they can take everything in and sit with the Macmillan nurse to ask questions. Chris and I are left alone while the nurse goes to find more information to hand to us.

I begin to cry at the enormity of what we've just been told and Chris holds my hand. We hug.

But then I stop, the clouds in my head parting for a moment. I wonder why I've just been TOLD what was happening instead of discussing all of the reconstruction options that I've read about. Then I get angry again. I don't even know who this man is, what's his job? I don't want him to do my operation. Is he a doctor? A consultant? What?

I had wanted a mastectomy from the start but I was persuaded that that was completely unnecessary and that a 'breast conserving' central excision would be best for me but if later down the line I wanted a risk reducing mastectomy then that would be fine, I could do that, but that was obviously a lie.

When the nurse returns I tell her again, I'd really like to opt for a double mastectomy but she tells me if that's really what I want then I would have to have the risk reducing mastectomy later down the line. The left mastectomy is their priority and if I want the right gone too then I'll need to wait months and months and see a psychologist so he can confirm that I am aware of the consequences of my actions! Wow.

I ask her to explain the reasons why and this time she explains that if I was to catch an infection on the right side from the risk reducing surgery and then an invasive cancer was to be found on the left then I could potentially be putting myself at risk. An infection due to an unnecessary operation could potentially prevent me from having life saving treatment if invasive cancer is discovered. A lot of ifs!

Next I ask about the different flap reconstruction options. I really don't want silicone - especially if I'm only having it in one side. I picture myself in my 80s with one perky boob on the left and one saggy dog ear on the right - imagine the sight - I'd look like a bloody Darlek!!

The nurse hands me a Breast Cancer Care booklet with details of all of the reconstruction options available. I tell her my feelings on silicone and that I don't really want to have an implant. Ideally I'd prefer a DIEP flap reconstruction where they take fat from your tummy and use that to reconstruct a new breast. She tells me they don't do that at this hospital. I explain my feelings and she heads back in to see Mr H. She said "Mr H says that's a shame because he thinks your the perfect candidate for silicone, he says if you don't want implants then he could do a back flap here at this hospital." No thanks!! I'm fuming that these options weren't given to me 20 minutes ago when I was with him myself. She tells me to take the booklet home and have a read then call back if I still want to discuss my options.

Chris asks about Mrs S performing the surgery but apparently shes not back until the end of the month and they don't want to delay. Hmmm, if it's ONLY pre-cancer then why the urgency. I hate this day. I feel like the nurse just wants us to leave. Chris probes again "Who is Mr H? Is he any good?" The nurse says he's a lovely man. Chris replies "I don't care how nice he is!Is he any good with a knife and fork?" I smirk. The nurse tells us all of the surgeons are fantastic.

I have another question  - no one has told me the results of my hormone test. Again the nurse heads back in to Mr H. "Oh he didn't know you hadn't been told, sorry. You're Oestrogen positive 7/8. I have no idea what this means and it's not explained but my heart is pounding with all of my emotions.

Upset, sadness and anger fill me.

We leave with the mastectomy info sheet and sentinal node bipsy sheet and the reconstruction option booklet.

This is not over. I am so disappointed.





Tuesday, 9 January 2018

Central Excision Day

I feel calm. Don't get me wrong, I've cried. I'm desperately sad to loose my nipple. I'm literally grieving for it. But the show must go on.

Today is the day of my central excision. We head in to the hospital - early this time. We arrive at 7.30am. I haven't eaten since midnight. I'm thirsty.

After half an hour the Macmillan nurse visits. She talks to me about the procedure and some exercises to do afterwards. There's some confusion over whether I am having lymph nodes taken. I was told I wasn't but the nurses seem to think I am. I know from my research that this would mean having a dye injected in to me so my surgery wouldn't be until the afternoon if that was the case. I'm secretly happy - I've had this horrible nagging pain under my arm for months and I have convinced myself it's something sinister - at least this would confirm it either way.

The anaesthetist arrives and calls me in to a side room. He asks me to confirm my name, date of birth and the operation I'm having. He runs through his list of questions - all good - and I return to Chris in the waiting room.

After an hour and a half, I see my consultant arrive. She calls another patient in first. I'm next - second on the list. Mrs S tells me they definitely aren't taking any nodes. She reminds me she is going in blind on this op as the cancerous cells haven't shown up on any scans. She will do her best to take it all away and get the clear margins I desperately want.

A clear margin means that no cancer cells are seen at the outer edge of the tissue removed. The tissue removed is usually sliced in to many pieces so the histology gives a very clear report on exactly what is removed.

Before I know it I'm in my gown and socks and kissing Chris goodbye. A nurse walks me to the theatre. I'm hooked up to all the monitors again, cannula in.

I look at the clock - 10.10am. By 10.14 I'm drifting off....


---


When I start to come round in recovery I am in so much pain. I'm still drowsy but the pain is so intense that I can hear myself groaning. The nurse asks me about my pain and administers me with morphine. I'm unaware that anyone else is in the recovery area.

Within 10 minutes the pain looses its edge. I'm so thirsty and drink 2 glasses of water. That's when I realise there's about 4 or 5 other patients that have been listening to me groan with the pain. I'm mortified.

I'm sore but I cant wait to see Chris and head home. I fall sleep for a few hours and when I awake I'm offered the famous hospital toast. The greastest toast ever. That perks me right up and before I know it, it's 4pm and I'm heading home. Chris has stayed at the hospital the entire time.

The car journey is excruciating.  We really need to get a car with better suspension.I'm signed off work for two weeks to recover. Hopefully we've managed to rid all of this horrible disease from my body.

The wait continues.