DECIDED IN ANGER TO WRITE A LETTER TO MY OLD ONCOLOGY DEPT.
Dear Mr B**
Ref: ***
As I was discharged from Mr Steve ****’ clinic back in 2006, I thought I should keep you informed of my ‘cancer’ history since then. As it may be of some interest to you.
As you know I was diagnosed with Hodgkins Disease in 1981 at the age of 16. I was treated with mantle radiotherapy, and surgery. Thankfully making a full recovery.
In 2005, Ductal Carcinoma In Situ was diagnosed in my left breast, which through my choice, I had a double mastectomy.
In 2008, Mr Merrick (Maxillo Facial) diagnosed Mucoepideroid Carcinoma inside my mouth, this was treated with surgery. I am currently on 3 monthly checks.
Yesterday, my GP diagnosed Basal Cell Carcinoma on the right hand side of my neck, which was removed under local anesthetic in his surgery
I am positive that all these subsequent carcinomas are due to the radiation I received in 1981. Would it be possible to tell me what stage my Hodgkins was and what dose of radiation I received?
I was also wondering if, given my seemingly ongoing medical conditions, it would be possible to have a periodical scan, if only for my own peace of mind. If that is possible who would I need to arrange that with?
I look forward to hearing from you
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Having a cancer is very traumatic on anyone. I have just been through my 4th Primary Cancer .....
About Me
- Siouxsie
- Bridgwater, Somerset, United Kingdom
- Hodgkins Lymphoma at 16 ..... Breast Cancer at 39 ..... Oral Cancer at 42 ..... Skin Cancer at 44. Living as long as possible, by overcoming every obstacle that gets in my way
6 comments:
I'm with you on this one, Sue. Had the same argument with my local oncologist on completing my BC chemo - I wanted a CT to be sure all the cancer was gone & for piece of mind, the local Oncs felt it 'clinically unnecessary' and that further CTs would just give me further doses of radiation unnecessarily. Thankfully one of the regional Oncs at Christie's Long Term Effects Clinic could see the benefits of piece of mind and I eventually got the scan.
It would be good to be able to get a scan every 2-5 years if you're symptom free and be fast-tracked for an immediate scan if you develop any symptoms. What do you think?
I'm still very much of a mind that us Hodgkin's ladies with second/third/fourth malignancies due to radiation damage should be in line for some form of compensation. (Eg Haemophiliacs treated with Factor 8 before such blood products where screened for HIV/Hepatitis were later awarded compensation... like us, they had no choice but to receive what was deemed at the time as the optimum treatment for their condition and it was later discovered to be damaging. There are less than 5000 of us in the UK affected by this... it's hardly going to break the bank. I'd probably not qualify anyway due to my family history of BC... but you'd be an ideal test case!
Truly wishing you good luck with the CT request... perhaps we should get together to push for a more co-ordinated approach to all this.
All the best of British, Sue
Jules
x
I too had Hodgkins at age 16. I was stage IIA and had 2 surgeries and 3 months mantle radiation. All was weel for 25 years until I developed Papillary thyroid cancer. Then at age 46(last week) I was diagnosed with Breast Cancer. I feel like it will never end. 6 months ago I was having shortness of breath and after numerous doctor visits and tests I was told I have COPD- from the radiation. These long term affects are such a pain.
Why did you decide to have the double mastectomy, if I may ask. I am being assured that this breast cancer is low grade and not invasive.
I appreciate any feedback as I see the doctors next week about treatment.
Cindy
Cindy,
Although my BC was DCIS, I was told if just the area was removed, there was a high possibility that it could come back elsewhere in the same breast or the other. My surgeon totally agreed with my choice. I now live worry free from BC. I have no regrets having a bi-lateral mastectomy, the only thing I would have done differently is I would have opted for immediate reconstruction. This would have been 16 hours on the operating table. I am overweight, and my plastic surgeon will not touch me at this time.
If you want to talk to me privately, please find me on facebook: Sue Englefield.
Best wishes with your appointment next week
Hi Sue,
Tried to add you as a friend on facebook , but there is no link with your profile. Maybe you can find my profile and add me as a friend.
Cindy Mark
Loganton,Pennsylvania
http://www.facebook.com/profile.php?ref=profile&id=573370764
alternatively email me on: davidenglefield@sky.com
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