Hello all, 

I was diagnosed with breast cancer, spread to the lymph nodes (grade 2, if my understanding is correct this indicates the spread of the cancer. Not the stage, because here they do not give stages) in January last year, from a CT scan for a different health issues. 

I had a lumpectomy and lymph node removal  in April last year  and intense Radiotherapy in July last year.  

I'm a pragmatic person. I do not like sugary sentiments or beating around the bush.  

I want the facts, however ugly they are so I can make informed decisions and I want all the facts not a drip drip system, which is infuriating.

It has been a frustrating, confusing and infuriating process so far.

Not least because clinicians and other cancer professionals think they know what is best for me, how I am feeling, how much pain i am in,  and what I really aught to know, how much, and when. 

I have Ehlers Danlos syndrome (EDS) and although cancer professionals (who I've seen) know of the condition, they do not know how cancer or radiotherapy treatments affects those who have it (at the start i was informed that lumpectomy was out of the question because radiotherapy was contraindicated).  There is apparently no research.  For example: scaring, pain, tissue damage, side effects, long term issues. 

I am almost a year after the operation,  I have had two hormone therapy medications (which is to stop the production of estrogen) These side effects although there were some differences with each one they were intolerable for a day to day working life.

A third hormone was offered but, the side effects were much more serious than the last two, so my family and I (after much discussion and Internet research) decided the risks of the side effects were too great compared to the 4% reduction in the cancer returning.  

4%,  does this mean that 96% of people taking these hormone therapies have returning cancer?  It doesn't make sense to me and I cannot get a straight answer. 

If I decide to take the 3rd hormone treatment I can go back within 5 years.

Form the beginning I have said no to mammograms (they are too painful and as a consequence inconclusive). 

When i was diagnosed in January  i was badgered into trying the mammogram one  more time. So I agreed to give it one more try because I was informed things have moved on and people's attitudes had changed and there is more understanding and a patient focused individual approach is used.  

My experience was that nothing had changed.  It was excruciatingly painful, but this did not make any difference. The person insisted on one more push,  one more push because the image wasn't good enough, until I could not stand the pain any longer and stopped the procedure.  

I was then given a hand held breast ultrasound and biopsies. 

I think had I been the kind of person who breaks does in tears things may have been different. 

However,  we are back there: 

I am still dealing with the pain from the operation or radiotherapy which I'm not sure. I cannot were a bra, it is too painful. 

Mammography is definitely off the table for me. Yet I am still having to justify the reason for not having them. 

I am asked to give it one more try with Entonoxl (gas and air or laughing gas) or diazepam. 

I do not do well with medication I'm informed this is because of the EDS, medication is dispersed differently.  I have a history of intolerance and allergic reactions. 

I do not want to be drugged up to have a mammogram, or take the risk of after effects if there are any. 

There are other options: Hand Held breast screening ultrasound.  CT scan (how my breast cancer was found in January). AWBUS (Automated whole breast ultrasound). MRI  (Magnetic Resonance Imaging). 

But, they are not available to me, the reasons given are, too much radiation or images not good enough that something may be missed. 

I did not find the original cancer despite examining every few weeks.

Is treatment really patient lead and individual or are those just buzz words? 

I hear a lot about decisions concerning treatment based on age and cost.  I suspect my situation is due to my being over sixty and justify the cost. 

Although I am  pragmatic and direct,  I do have feelings,  I may not show them to people I don't know. It's upsetting and frustrating to hear professionals saying things like:  you don't need to know that yet,  we will come to that another time, I'm sure you can put up with the pain just a bit longer,  or we only have one more fight to get you to have mammograms.