Stephen Pound MP,
HOUSE OF COMMONS
8th December 2012
My Ref: MEND01008
Thank you for keeping me updated on the breakthrough breast cancer aims that were brought to your attention. I found the attached letter from Anna Soubry very interesting in the fact it shows she is not aware of the bubbling pan that she sees on simmer among women of my age group. I am a HER2 triple positive patient and have experienced sadly how MDT boards get it wrong i.e. my recurrence.
January 2009 I went to my GP with a feeling something was not right. At the age of 38 I did not have a lump in my breast which media publish day in day out in fact there were no symptoms to speak of. My GP checked my breast and said Mrs Mendoza you have nothing to worry about. One month later while I was in Egypt my left nipple developed a lesion on the tip. Thinking it was just chaffed nipple I treated it like cracked nipple due to breast feeding. On returning home I purchased crack nipple cream and anti-septic cream. From March-August 2009 I tried to cure my issue I did not know I had developed Paget's. This cancer is rare among women my age group and in a lot of cases can be treated as eczema rather than cancer. When finally returning to my GP in August because I am also Type II diabetic a full set of bloods was ordered. And yes my GP treated my breast cancer as mastitis rather than breast cancer which is another error commonly done. It took two weeks until my GP finally sent me to the hospital on a URGENT after receiving my blood results. The fact that women are not normally sent for mammograms due to density of breast tissue also cropped up during my diagnosis. At Ealing hospital they instantly on the same day after me having a mammogram and it showing mass calcification of my left breast for core biopsies. These biopsies were done via ultra sound and after 2 weeks came back inconclusive. The MDT board were going to release me because to them even though they had not seen me in person. I did not have Paget's or High grade wide spread DCIS lurking within my breast. Thankfully a oncologist at Ealing stepped in and insisted that the core biopsy be repeated but this time with a mammogram. Her words I do not understand why they do these tests via ultra sound because the breast tissue can move away from the core needle. I had to go through the pain of waiting on results a second time which was not pleasant, but had to be done. October 2009 I had my left breast removed and reconstruction done the same day. My cancer was pre-cancer all in situ my lymph-nodes were free of cancer. The results from biopsy at Charring Cross hospital showed it was triple positive to HER2 and neg to progesterone and estrogen. I had a pre-cancerous tumor growing laterally six centimeters and had attached to my peck muscle wall. Showing possible micro invasion with a fat question mark. The MDT board had decided the mastectomy was adequate treatment and no medication was required.
For three years I was going back and forth with follow up appointments. My right breast for what ever reason had developed mass cysts and was not playing ball. In January I had a lumpectomy done for a suspicious area. At one appointment a registrar in 2011 at Ealing hospital that I had never met before was even going to discharge me. His words but your case is straight forward you don't need to see us anymore. My reply but I'm due another six month appointment. The man in question had not even read my notes, but under protest gave me another 6 month appointment.
July 2012 I'm sat in bed the day before my six month appointment and I feel a 5mm lump on the outside edges of were a mammogram would not detect. I personally thought it was down to scar tissue from the drainage tubes from mastectomy. On going to my oncology appointment the following day and speaking to the registrar I repeated said written words. He had other ideas he believed it was a lymph node, but because my right breast was still not settled he wanted both breasts checked with an ultra sound. In the ultra sound room they found two what looked like cysts and believed them to be harmless. They took biopsy of both lesions and it come back as a recurrence, but this time the results showed Stage 3 cancer with HER2 triple positive and estrogen positive.
And the moral of this story Stephen well if it was not for me being on my feet and being pro-active over 3 years I would be pushing up the daisies as we say up north. On speaking with my breast cancer nurse on the phone at Ealing Hospital I said I had received better care having a high risk pregnancy. And I know if I had been in America they would of given me Herceptin. Her reply but Sarah we are not in America.
Stephen I have been back and forth from hospitals for various health reasons since I turned 19 yrs old. And the one thing that sticks in the back of my mind was when a nurse approached me back in 2007. Sarah whatever you do do not fall pregnant or seriously ill in London the care system there is a mess. That maternity nurse had moved from central London to a post at York District Hospital.
For someone who is only 42 years old I have many stories to tell about the NHS system and how sadly things can go wrong if patients are not listened too and their needs met.
Only this past two months of my treatment I had another issue arise because on first meeting with Mr Lewanski in July 2012 at Ealing Hospital who is also based at Charring Cross I requested a portacath. His words but you have juicy veins. After years of prods and pokes my veins collapse and it is written on my Ealing medical notes that my veins are awkward, but Mr Lewanski knew better. On my first cycle of chemotherapy my veins instantly collapsed and hated the FEC 75 treatment. The nurse said I needed to have a portacath and she would put in a request. My second cycle approached and on meeting with a registrar at Mr Lewanski clinic he said nothing had been said or written. His words can you tolerate the next cycle until we get you a portacath after all you will be receiving herceptin for a year also. I agreed and the following day in the chemo unit at Charring Cross again my vein started to collapse and became agitated with the treatment. I insisted that the treatment continue and the nurse was concerned and wanted to find another vein in my right arm because they cannot use my left arm done to lymph node removal. My treatment should of taken one hour, but took 2 hours and 40 mins to complete. The nurse said if they do not contact you in seven days for portacath refuse treatment. That I should ring Mr Lewanski office and chase said portacath. As she instructed I after having chemotherapy had to ring up Mr Lewanski office to ask why I had not received a referral for a portacath. The following day a message had been left for my portacath to be fitted in 2 days time. On returning to Mr Lewanski clinic for my bloods to be taken I waited for 1 hour and twenty minutes to be told I did not need to see Mr Lewanski he has not seen the damage to my juicy veins.
And the Moral of this story well I'm left with two damaged veins and now a cysts because my arm became infected. And Mr Lewanski is not even aware of the infection in my arm which could lead to my treatment being delayed. On ringing Charring Cross hospital last week complaining about my arm the Oncologist who was out of hours said it was nothing to worry about. I saw sense and went to Northwick Park and they put me on a course of anti-biotic. When Northwick Park tried to contact Charring Cross with an emergency number I had been issued they could not get a reply. Northwick Park wanted to discuss the treatment they wanted to place me on due to an issue with a reaction I had with anti-biotics when having the portacath fitted.
My story is not unusual within breast cancer treatment in fact in some places it has become normality. Those that understand what standard of care is acceptable are the ones that are speaking out. Yet due to fear some remain silent because they do not want to come across as nags and just want to return to normality.
Anna Soubry needs to get out of the office and visit the cancer clinics in my opinion. I have seen women die because young women are not being heard and are receiving treatment too late. She is placing a age on breast cancer when there is no age requirements to breast cancer. My request for both smears tests and breast cancer to be placed together is not to confuse the two illnesses, but to make sure young women understand the importance of early detection just like cervical cancer. As a diabetic I have what I call a yearly MOT. That yearly MOT saved my life because it was those bloods that found my breast cancer. If I had not developed Diabetes those bloods would not of been taken. Diabetes is nothing to do with breast cancer, but has everything to do with breast cancer because with type II they have found a possible link to breast cancer.
I do not want to sue the NHS for leaving my young daughter without a mother Stephen. I want the NHS to improve and recognize that it needs to improve the system across the board for other young women being freshly diagnosed with this disease. We need support, we need to be heard and not ignored. We have families and friends sat on the side lines without support. I have watched the numbers jump from 28,000 to 48,000 in three years. And they say it is down to early detection, but sadly how many of the 48,000 are left in the cold.
My stories may also highlight why in some cases people refuse to sign petitions in keeping said hospitals open. If the staffs at said hospitals are not listening to patients and failing to meet their needs across the board then said patients will not back a petition because they have become disillusioned. How can a patient back a system that is flawed and leaves patients feeling unhappy with their treatment...
Hope to hear your thoughts on my reply.
With best wishes