I find keeping a blog a good way to get my thoughts in order. The added bonus is that I get such lovely replies.
Monday saw the consultant (10 days post mastectomy). Healing nicely but path lab results from op not back yet. He explained that I did not have breast cancer although the aftercare was the same. I had a soft tissue sarcoma (angiosarcoma) which happened to be in the breast. So most of the information relating to breast cancer won't apply to me, and there is very little info on my type of cancer. I then saw a breast care nurse. She was stunned and horrified to learn that:
1) I was never offered a nurse pre surgery who could have offered some counselling re the op and how I'd feel after
2) I had not been given any exercies to do
3) I had been allowed home without a "softie" to put in my bra (i thought I'd have to wait 6 weeks for scar to heal before I wore one - how long do you think it took me to get to the shop when I left the hospital?)
Tuesday I saw the oncologist to discuss treatment. Learnt that chemo has very little effect on my type of cancer (70/80% effective normal cancers 5/10% on mine) so only recommended as a very last resort. Radiotherapy works best. The bad news is that as this is not breast cancer they have to use a higher dosage (?) of RT over a bigger area for 25 days then 8 days of an intense RT in the area where the tumour was.
So how hard can radiotherapy be? Well before he gave me the consent form to sign he explained the risks, particularly in my case as I would be having a high dosage:
1) lung problems
2) type of osteoporosis in ribs
3) damage to liver
4) soft tissue sarcoma developing in other areas as it can be caused by RT
5) burnt skin over a fairly large area of my chest
The good news is that as it was my right breast the heart should be unaffected - whoopeedoo
So being terribly British, I said that sounded fine and signed. Just how hard can it be?
FormerMember
Both the 'Errors and Omissions', and the side-effects from the Radiotherapy. My side-effects spilled over the space permitted and trailed off down the page. I suppose they just have to add anything that anyone has ever suffered, and hey we should be jolly lucky to have treatment at all! Hmm - also note the cheery delivery of Bad News - do they attend seminars on this, do you think? I also see that you too have a Statistician: well, if I were you I would ignore all those bad news percentages, because they can have an incredibly adverse effect on your morale, and what is he exactly saying? My oncologist just loves trotting these out, and has a new one every time I appear before him.
We sign because what the Hell else can we do? Keep that stiff upper lip handy, too, Sharry! Lots of love, xxxx Penny
Well what can I say!? Pre op counselling? That's a new one on me! Exercises to do post op.. let me see..? People did ask whether I had had been told what exercises to do, but despite me saying no, never actually volunteered any information, but I guess they could tick a box to say it had been covered!! Hey, but what's a bit of lymphoedema when it's not your leg!
Good news/bad news on the chemotherapy front, I guess, my cancer doesn't respond to it either, or so I'm told! But I don't get the option of radiotherapy either.. just fingers crossed!
Thanks for your kind words Sharry, and here's a big hug from me ((((~*~*~*Sharry*~*~*~)))) with both arms!!
