Friday, 31 December 2010

Another Appointment & More Questions

30th September 2010

Met up with Lyn at Victoria station before going to my appointment this week. I showed Lyn my pathology results and discussed a text message I received from Sharon. Sharon thought I should of been on herceptin to prevent the problem from returning. Lyn said she was not sure because some of the other girls have been treated the same way as me with DCIS. The argument is that if you are HER2 +++ with pre-cancer should I have received this drug? I’m not sure and find the whole treatment scenario confusing. DCIS is not recognised as a cancer and a mastectomy is a precautionary measure, but mine was high grade with a tumour.
My concerns for my health are genuine, but I’m not sure they are being heard by the team that are treating me. If the cancer has returned has the system let me down?
Lyn reassures me and explains that the only way any solution will come about is by the mammogram.
We arrived at the hospital a little late, but were soon ushered into another corridor adjacent to the mammogram room. The radiologist quickly explained why I was called back. They had found three areas on the breast with calcification developing, but only small. Lyn quietly sits and listens to what the radiographer was saying. I requested if Lyn could be in the room with me and of course the answer was no!  
My mind and body went into auto mode. There was no time for tears and tantrums. The radiographer could do nothing, but apologise for the distress I may be feeling. After all it was sprung on me with no warning in their eyes. The truth of the matter is I have been preparing myself for months.
My consultant had insisted on eight images to be taken of the right breast in various angles. Six of the images were to be magnified. Every picture that was took I yelped with pain. My poor breast had had enough and was making it known.
Once the images had been taken I dressed myself and returned to the area outside the room where Lyn was seated. She said she could hear me yelping and all she could do was wince.
The radiographer said that they would contact me as soon as the results had been viewed by my consultant. Lyn stepped in sharp “But when? Today, tomorrow or next week?” Lyn is sharp and on the ball with her questions. Personally I would of just walked away nodding my head. Lyn was upset that I had not seen my consultant that day. Her team of consultants dealt with her the very same day, but Lyn had private health insurance.
We left the hospital slightly deflated and at a miss at what to say to each other. We clambered onto a bus and set off back to Victoria station. Why do we have to wait so long? Sharon has had her treatment for recon cancelled twice because of complications. Stress free life is all we want, but with this diseases it isn’t lightly.

Letter from the Big C hospital

Dear Dr S

Re: Ms Sarah Mendoza – DOB: **/**/**** NHS Number **********
      18 **** **** Road, Northolt, Middx, *** ***

Diagnosis: Eleven months post left mastectomy and immediate reconstruction with latissimus dorsi and implant.

Management: For release of tethering, inferior aspect reconstruction.

I saw Sarah in clinic today. She is doing well. She does have an area of tethering inferiorly which is deforming the shape of the implant, this on a background of grade 2 capsule formation. I suggest we could try and release this local area as her capsular formation now appears to be static. We will therefore organise to get this done on 15th October and I will let you know how she gets on.

Yours Sincerely

Mr H

Spoke to my BC nurse about the mammograms. The MDT had not done a review on how or what would happen. This will take place on Tuesday and she will get in contact with me once they decide.  
My BC nurse has asked me to take a calendar into the hospital and have a chat about it. Also my GP surgery have agreed to put a poster up too.
The Gertie’s are on a roll and it is a positive.

Got involved with an interesting discussion on FB. With breast cancer our only hope at being treated correctly lies in medical hands. We are told to believe and trust the system we are in, but what if that system has a dark side? Cancer is a multibillion making industry with people at its mercy. If a cure was found those billions in research would be gone. You make treatment easier and people lose jobs. This breast cancer lottery is getting more complex by the second.

M: Bernie Nolan is a great woman but she is campaigning for more mammograms. I´m not sure if she is aware of the dangers of Mammograms, they use 1,000 ionizing radiation per breast. If you have a lump there already this can make it WORSE! Using Digital Thermal Imaging can detect cancer 8-10 years before a mammogram. Why a...re the NHS still using such old and dangerous methods of detection?. There is a proven alternative.re the NHS still using such old and dangerous methods of detection? There is a proven alternative.

J: costs per person?

S: insurance and cost

P: unless you have been there and looked into all this you just don't know - I didn't!!!! If it makes it worse than why do they do mammograms, if it's a lump can't they just do an ultrasound? I don't understand I'd agree to anything if I thought I had cancer

F: Please send me the scientific proof of this. I will forward it to my solicitor it will make my case concrete !!

Sarah: My tumor under my nipple could not be seen on mammogram or ultra sound.

B: It was only because I had a cyst drained then another came up within 10 days that the consultant sent me for a mammogram. My tumor was so deep back in the breast it couldn’t be felt as a lump. Even the mammogram didn’t make it obvious. I had to have an ultrasound as well. Younger women have denser breast tissue so making it harder to detect anything on mammogram. Having said that I’m so glad that I had a second cyst come up else I wouldn’t be here chatting to all of you. I was told by consultant that the reason they don’t do routine mammo’s in under 50’s was because of the breast tissue density.. so it does make me wonder .. xx

L: My husband is in NHS Finance, it’s all down to money.

F: I’d agree there, I asked for a sentinel node biopsy... they refused it and I ended up having full lymph clearance for no reason.. but I can’t complain they’ve spent enough on me with herceptin. I think the key thing is, ladies should still go for mammograms it’s important to know that they CAN detect cancer early and without all types of screening, ladies would be diagnosed later than necessary.

H: Sounds like false economy to me. Mammography uses ionizing radiation that can cause cancer so treating the cancer that mammography causes is mad. All healthy women should run a mile from mammography. Mammography is NOT early detection, Thermographs can detect breast abnormalities including cancer 8-10 years before mammography. That’s early detection... it is also 100% safe and more accurate especially in younger women, and guess what they can rule out the need for dangerous unnecessary biopsy. Biopsy causes angiogenesis that triggers tumor growth and the spread of cancer!!! Thermal imaging cameras cost far less than mammography machines. If it’s down to cost use thermographs for early detection and remove the cost and misery of the aggressive treatments that wouldn’t be needed

Now if a man can end the discuss on a valid point and all what was said is common knowledge. Why aren’t we having thermal imaging? 
There are a lot of people out there with valid points, but these points have yet to be proven. When talking to Lyn she explained the very treatment we receive as its risks not just to the patient, but to the nursing staff doing it. It has been noted that staff handling the chemotherapy drugs are getting cancer. Not only that those that are exposed to x-rays or rads have questions that need answering. When we have our treatment we are thinking of ourselves and our families not the duty of care to nursing staff. So the very treatment we are given is putting others at the mercy of this disease.

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