8th May 2010
I Fell out with my eldest daughter today over her great aunty. I honestly do not know what is going on in her head. Her point that she put firmly across was, just because they say her great aunty won’t get it does not rule it out. Why be negative? Why not say that is good news?
My reply is how long is a piece of string?
This whole genetic testing is causing nothing but stress. The family cannot respect my decision at all. The consultant and the BC nurse say there is nothing to worry about. The consultant dealing with her great aunty said she is low risk. So their opinions match and this is what I explained, but no. This she thinks I am being selfish about and stubborn. I do not want the genetic test because of insurance and my kids future. Why is it everyone else around me including women who have this diseases agree. My situation is low risk, but high in recurrance due to results.
I received my histopathology report from my mastectomy in October 2009. The notes were to be passed onto my aunty, but she no longer needs them.
A: LEFT MASTECTOMY
Widespread high grade DCIS left breast. Sentinel node negative.
LEFT MASTECTOMY: Mastectomy specimen, weighing 170g and measuring 19 x 15 x 3cm, with attached piece of skin, measuring 7.5 x 4 cm and long stitch – lateral and short superior. Posterior surface painted black. The specimen surfaces are intact anteriorly and posteriorly, suggesting that the tumour is completely excised. Sliced into 16 slices from medial to lateral. Cut surface shows an ill-defined, hard, pinkish-grey tumour, starting from behind the nipple and extending for 6.5cm laterally. The rest of the breast shows nodular areas.
Sections show foci of high grade ductal carcinoma in situ, some with comedo necrosis and microcalcification. The tumour starts just medial to the nipple (A20, 21) and extends laterally for 65mm as measured grossly (A22, 49). Some of the main ducts behind the nipple are involved (A22,23,24) and there is overlying Paget’s disease of the nipple with ulceration (A25, A40). The lesion is 0.2mm from deep excursion margin (A25, A40). Foci of possible micro-invasion are present (A30, 32). The breast also shows widespread foci of fibrocystic change. No lymph nodes are identified in specimen.
LEFT SIMPLE MASTECTOMY:
HIGH GRADE DUCTAL CARCINOMA IN SITU< WITH FOCI OF
HIGH GRADE DUCTAL CARCINOMA IN SITU< WITH FOCI OF
POSSIBLE MICROINVASION; 65MM; 0.2MM FROM DEEP
EXCISION MARGIN + PAGET’S DISEASES OF THE NIPPLE
Immunoperoxidase stains show that the tumour is ER and PrG negative (0) and HER2 strongly positive (+++)
Breast DCIS with possible micro invasion: ER-
Now do I understand what is written above? Yes and no.
I’ve been advised to chat to the BC nurse by a friend, but the job is done. Do I really need to drag it up any further?
The good news I am not triple negative. The bad news is there was a tumour.
People are showing concern that I am not on any medication because of the HER2 result. They think I should ask why this is? A couple of the women I have been speaking too are on medication for being strongly positive and are concerned.
I am starting to understand more about the type of cancer I had. That the Pagets’ is a rare condition, but I don’t understand the panic in their voices. No-one I speak to has been affected by DCIS and Pagets’ or know anyone. So I have nothing to compare my condition too. Maybe I should go to the Maggie clinic and speak to them. It is a choice and it will remain a private conversation and I will not feel judged.
A women on a forum asked why I did not put Pagets’ first rather than DCIS when writing. I honestly could not answer after all cancer is cancer.
I must admit they have got me thinking about it.
I have found a new forum site which I am comfortable with. They are in control of personal details and the women joining. So you have no cranks coming on upsetting people.
There is also a site that organises day trips for people affected by cancer. You can apply only once and it is for 16 – 40 years old.
It is a sad story how this organisation was put together, but I shall let you read it. The ladies and myself said it brought tears to our eyes.
I have arranged to meet up with a women from the forums I go on. She lives locally so we are meeting in central London and having lunch.
I have become a very busy lady of late. Throwing myself into designing and making various bits for the theatre has taken my mind off my other breast even though it throbs. I am now displaying my work on face book so people can see what I'm up too. The interest it has generated and comments I have received have been really a boost. The BC ladies are amazed at my talents. So when the director rings me to ask how to imitate waistcoats on black t-shirts. It made sense to me to make and design actual waistcoats from scratch. With a subtle hint at the fact the theatre should start paying me. I know I will not make the money on making theses costumes because of the amount of time I have put into them and the lack of qualifications in this area, but a good will gesture is better than nothing. I just have to wait and see if the director sees it that way.
From putting my pieces up on face book someone requested a dress to be made. I said I would love too, but I am busy right the minute with the three productions going on stage next year. One choreographer friend has requested costumes also.