Lisa's Story
Background: Mum had a disease (another rare one) called PBC which is where your immune system has a blip and attacks your liver over a very long period of time. This means that the symptoms don't show until you are at least 40. In mum's case she was nearly 70. Upshot of this without going into too much detail is that she was on the transplant list at deaths door for 18 months and had about a week left to live when a liver came along. Hey presto she was better, and lived a normal independent life for the five years before this saga began.
Jan 2010: Mum finds a lump on her lower leg. Goes to the GP who says its a cyst.
Feb 2010: The lump has grown and another GP at the practice says its an absess and prescribes antibiotics.
March 2010: The lump is still growing now at a more rapid rate than before. So we push the GP for a 2nd opinion.
April 2010: GP decides to ask for another GPs advice. Other GP books mum in for a biopsy at the surgery.
May 2010: Mum has the biopsy and then waits for the results. (Meanwhile the lump has grown itself some little chums and is nearing the size of a small apple)
June 2010: After MANY phone calls to chase up the results we are told the name of the cancer MCC but we are waiting for different consultants to get together and decide who is going to take her case on. Mum is finally taken on by a doctor at The Christie hospital in Manchester. The doctor at The Christie gives us the option of surgery1. an amputation of the leg or 2. removal of the main lumps and zapping of the smaller ones with the laser. We discuss other treatments with him and are told that there are none. We are told that MCC is an extremely rare cancer and is extremely aggressive, coupled with the fact that mum takes immunosuppressants for her liver, there is NOTHING to stop it spreading. By this time the lump is nearing the size of a large baking apple, its chums are all over her lower leg, and have grown friends of their own (around 3/4 large ones and another 10 smaller ones). We ask if amputation will stop it spreading - No. Mum decides that she still wants to be able to hobble around so we opt for the surgery to remove the lumps rather than amputation.
July 2010: The large lumps are removed and a skin graft is attached and all the other lumps are lasered. Mum spends a couple of weeks in hospital getting back on her feet (the staff are fantastic). First outpatients appointment - good news the graft has taken nicely. Bad news - more new lumps have grown all around the edge of it with more also appearing on her foot. The next few months are a blur of doctors telling us how "tricky" this disease is and lots of different doctors having a look at the famous leg. Endless photos are taken of the famous leg and mum jokes that she feels like Katie Price she is that much in demand. Then... we find out that the doctor we have been dealing with has left to concentrate on his private work. Fantastic.
October 2010 - There are now lumps behind and above mums knee. We have an appointment with the new doctor who says there is nothing more that he can do and he is going to pass mum to the oncologist. WHAT I thought you were the oncologist. No no I am a plastic surgeon. Why hasn't mum seen an oncologist in all this time? Because MCC is a rare and aggressive bla bla bla. I speak to MacMillan for support who say that when the meeting was held originally to decide who would deal with mum, the case would have been passed to whoever had experience of MCC and was willing to have a go at treating her. We asked what the oncologist would do? Discuss chemotherapy or radiotherapy. We were confused as we had been told that these things weren't an option. They aren't but speak to him anyway. I had many times, and still do it now, taken to trawling the internet whilst my mind was spinning, just to see if there was any information whatsoever that I had missed. All the time thinking surely if there was something the doctors would have already suggested it. Not so. I came accross a procedure called isolated limb perfusion (the link below).
http://dermatology.cdlib.org/147/case_report/merkel/ponte.html
We discuss the procedure and are told that there are only three doctors in the country that can perform such a procedure and that the doctor will speak to one in Leeds but he doesn't think there's much chance of having it done. He tells us that every week that mum survives after christmas will be a bonus so we round up the whole family and tell them.
November 2010 - An appointment arrives to see the doctor in Leeds. We speak to the oncologist at the Christie who agrees with the last doctor in that every week that mum survives after christmas will be a bonus (as this is a rare and aggressive.......). Amongst the gloom and doom conversation I mention the appointment for Leeds. The oncologist goes away and comes back to say that he thinks its a good idea to go. (by this time of year its snowing and the roads are very bad and mum says she doesn't want to go unless its worth it). After much persuasion the doc at the Christie e-mails the photos of mums leg to the doc at Leeds for him to look over and decide if its worth the trip. YES - off we go to Leeds.
Dec 2010 - Dr Howard Peach - Fantastic man!! Sees mum on a Thursday in clinic (by this point the leg look likes it is rotting and smells so bad it makes you heave ). She also has a lump in the lymph gland in her groin. What a positive and pro-active man. By the following Monday mum is in Leeds General Hospital and has the isolated limb perfusion. She comes home Christmas Eve and is poorly but hopeful.
Feb 2011 - Yipee!! Most of the lumps have gone or shrunk !! Her leg was so bad before the infusion that the only way to manage it was to amputate. This way, she may not live so long but she is at least mobile and not smelly. Bad news - the lump in the lymph gland is huge and there are fresh lumps growing at the top of mums leg. We visit Doc Peach (yesterday). Again - very efficient - mum is booked in for Tuesday next week to have the lymph gland in her groin and pelvis removed. We are hoping that this may give her more time.
