Ok so unfortunately getting a second opinion at the Royal Marsden wasn’t going to be as easy as I thought. As I lived outside the NHS England jurisdiction I was not entitled to a NHS second opinion in England (Royal Marsden is within this) only within my own NHS jurisdiction which I was offered.
Dr J rang me to say he could refer me to someone within our own Health Service for a second opinion. I talked to him about the advise I had received from our Specialist doctor from MD Anderson Cancer Centre through the IBC Network. She had suggested that I could be offered a Platinum chemotherapy which in recent studies had shown to be more effective in Triple Negative and BCRA cancers. On this note I asked when I would be getting genetic testing as it was now 3 months from being referred. I asked if I could pay private for this if it was going to make it any quicker. I was really starting to believe I had a BRCA genetic mutation as my cancer had been resistant to the chemo’s offered to me which is a factor for BRCA mutated cancers. Yes I could pay private however this would be in the region of £2K.
As my Inflammatory breast cancer was ER+ (fed on oestrogen) I had been prescribed Tamoxifen to reduce my Oestrogen levels. However I had the Mirena Coil which produces Oestrogen. I asked DR J should I have this coil in? as surely it was contradicting the reason I was on Tamoxifen. He advised me when my coil was up for review I should get it changed to the copper coil. I told him I had an appointment the following week so would get it changed then.
With a lot to think about in relation to my second opinion I told him that I would let him know by the end of the week what I intended to do. The following day I rang the Royal Marsden and asked how much a private consultation for a second opinion would be and what the process for getting one was as I had been advised by my oncologist I was not entitled to one through the NHS. They advised me that my GP could refer me and how much it would be for a private consultation which was less than £1ooo and what I thought would be money well spent to put my mind at rest.
With that determined I had made my mind up I had to have this independent second opinion therefore I rang to let Dr J’s secretary and told her I was going to Royal Marsden privately. From talking to our Dr in America and the extensive research which I had done I knew there were other chemo options which may be more targeted on my cancer as I was Triple Negative and potentially had a BRCA mutation. I needed peace of mind that I was doing everything possible to stop this cancer from coming back however I was also willing to accept if the Royal Marsden said no there was nothing more I needed that I would move on with my life.
Fortunately my husband kids and I had a weekend in Alton Towers arranged so that took my mind off everything for the weekend. The weekend had been paid for by the Willow Foundation a Charity founded by Bob Wilson (former Scotland International and Arsenal player) and his wife Megs as a lasting memory to their daughter Anna who died of breast cancer at the age of 31. The Willow Foundation provides special days to make special memories for young people (16-40 year olds) who are seriously ill at the most difficult times. One thing I have learned is the array of charities available which I had never heard of before or was totally unaware of what all the work they did. I found out about the Willow Foundation through another charity The Cancer Fund for Children who had been out to visit me after I had been told how they support kids through a cancer diagnosis. I must really praise these charities for the work they do and the opportunities they offer families going through a cancer diagnosis or other serious illnesses.
I also assumed the Cancer Fund for Children was a charity for children with a cancer diagnosis which I believe initially they were. However they also support families and children who are affected by cancer. As I found out about both these charities by chance I ensure to tell people I come into contact with in hospital waiting rooms, cancer units or out and about the work that these charities do and the support they can provide them and their families with. It is amazing how many people don’t know about these , however its probably a case of until you or a family member are affected by something like a cancer diagnosis we all carry on in our own we bubbles. Yes when we see the charity tins and street collectors we will always give but we don’t really get a full understanding for the work that these charities do until we need them which is sad because we don’t then appreciate the work they do for others until we need them ourselves.
Other local charities which have supported me with various services are the Friends of the Cancer Centre, Macmillan, Cancer Focus, Prettynpink, Look Good Feel Good charity and the Citizen Advice Bureau. I just hope that everyone who is affected by cancer gets access to all these fabulous charities although I do fear its a case of if you don’t do your own research or ask then the information about services provided by local charities isn’t widely advocated, or its perhaps more inline with my opinion that the whole cancer service is disjointed with no one taking a holistic view of patients care from diagnosis to life after cancer. Although I do know that for unfortunate patients who do not get the opportunity to have life after cancer this is were the hospices step in and from what I have seen they are worth their weight in gold. .
In relation to a breast cancer diagnosis you see the Consultant who gives you the bad news. Then you have the Breast Care Team who will be your point of contact during surgery. Then you are referred to Oncology or vice versa for those who have chemo first. At this stage you see an Oncologist and chemo nurse every 3 weeks. You are then referred for Radiotherapy and will see radiographers everyday with a visit by a doctor mid to end of treatment.
When this treatment is over women are sent away to get on with their lives, many women at this stage feel abandoned. For months patients have had a comfort blanket of being seen within the medical profession regularly. The final day of radiotherapy and the days to follow for many women are feelings of fear of their cancer coming back and an abrupt abandonment by the people that have cared for them over the past number of months.
Although I availed of counselling services prior to my mastectomy my counsellor advised me that the end of treatment often triggers the reality of what you have been through. Its like we have been running on adrenalin for months and then with no hospital appointments or milestones to aim towards all of a sudden there’s time to stop and think and at this stage the enormity and trauma of what we have been through hits us like a brick. I know there are charities which can help so many women at this stage and I just want to make sure every women is aware to get the help that is available but also let them know that they are not alone when they feel this abandonment.
I learnt a mantra being part of the Inflammatory Breast Cancer Network and that is “Hope Always”. There has to be hope or we couldn’t get through our day. It can be as simple as hoping its going to be a dry or sunny today, or hoping to get a holiday booked, or get a few days off on leave, I hope I don’t take a cold. Well to get out the other side of a cancer diagnosis you have to have hope otherwise there’s no point going on. If we didn’t believe that we were going to get over the nausea and sickness, the sore mouth, the terrible pains and everything else we endure and that one day it will all be over and we can get on with our lives. How could we ever pull ourselves out of bed to get through another day if we don’t have hope after all I believe hope is the only thing stronger than fear.