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Anyone around who can read medical records?

10 replies

lifekeepsgoing · 12/06/2023 18:00

Anyone around who can read medical records?
Sorry if this is not the appropriate place to ask this question but I just wondered if anyone is around who can read medical records and know what "ER and PR and negative" means?

I am trying to determine if my mother's ovarian cancer was estrogen positive or not. I need to get the information before my doctor will prescribe HRT. I assumed I would just get the information but instead I have received all her medical records and I am trying to make sense of them.
I think that the information below means that the cancer cells were estrogen negative but just wondered if anyone more knowledgeable might be able to offer any insight? Googling suggests that "ER and PR and negative" means negative for estrogen.

"InterpretationA. Right ovary - Immunohistochemistry has been performed which reveals strongand diffuse positivity of the tumour cells with P16 and P53 (mutational typestaining with P53). ER and PR and negative in the tumour cells (Quick score of0/8 for ER and PR). WT1 is positive in most of the tumour cells. SMA isnegative in the tumour cells.MYO-D1 is positive in a few scattered cells within the sarcomatoid areas"
Thanks for any insight anyone can share.

OP posts:
AnIntrovert · 12/06/2023 18:38

It is NOT oestrogen positive.

The tumour is not oestrogen receptor positive (ER-negative) as indicated by the negative staining and a Quick score of 0/8 for ER.
Both the ER (oestrogen receptor) and PR (progesterone receptor) are negative in the tumour cells, this means, no response from hormonal influence,

It is caused by a mutation in the P53 gene as the tumour cells show strong and diffuse positivity with P16 and P53. This is the important piece of information.

Any other cancers on your mother's side of the family, especially colon cancer? How old was your mother?
I think it would be wise to test for the P53 mutation. Ask for a referral to genetics.

lifekeepsgoing · 12/06/2023 21:13

Thanks Anintrovert for being able to understand and pick out the most important information. My mum was 79 at diagnosis and it is the first time cancer has shown up anywhere in the family although her father died in mid 50s from a non cancer related death so perhaps did not live long enough for any possible cancer to show up.

OP posts:
AnIntrovert · 12/06/2023 21:20

If there are no cancer in family, it is probably a somatic mutation.
Did your mother survive her cancer?

lifekeepsgoing · 13/06/2023 03:14

Anintrovert, I appreciate you sharing your expertise. Sadly my lovely mum survived only 13 months after ovarian cancer diagnosis making it almost to 81.

OP posts:
AnIntrovert · 13/06/2023 07:32

Sorry to read that. Ovarian cancer, the silent killer. I hate cancer. Receiving her medical records must have tough for you.

You know you can cut your ovarian cancer risk by 95% by having your Fallopian tubes removed.
It is recent knowledge (10 years roughly) , that most ovarian cancers originate in the Fallopian tubes.
If you scroll down the GENTURIS webinar page to the breast and ovarian section , there are several webinars on this topic. https://www.genturis.eu/l=eng/Education-and-training/Webinars.html GENTURIS stands for Genetic Tumour Risk and belongs to the European Oncology Network. Click on "view" to watch the webinar.

There is no downside when removing the Fallopian tubes. It doesn't induce menopause or cause other hormonal imbalances. You can't have kids, that's all which might be your golden ticket.

A UK doctor would be very reluctant to do it for cancer prevention (compared Holland) , but it is done for sterilisation as well. Careful , ligatures of the Fallopian tubes does not prevent cancer, so if using this excuse , it has to be a double salpingectomy.

Webinars

https://www.genturis.eu/l=eng/Education-and-training/Webinars.html

Tidsleytiddy · 13/06/2023 08:49

I have one fallopian tube owing to an ectopic pregnancy many years ago (now have two sons) and had tubal ligation on the other tube. I’m attaching some info I found

Anyone around who can read medical records?
lifekeepsgoing · 13/06/2023 16:27

Thanks Introvert and Tidsley, I did not know that. Yes I was not expecting all her medical records to be sent through, it was a little sad reading through them. I live overseas and it just reminded me I wish I had been by her side through diagnosis and treatment but she was not alone.

I suppose I will be at higher risk of OC if my mother had it although she was older and I suppose you are going to get something once you get older.I did not know that you can reduce your risk by having your tubes removed so that is useful knowledge to have. Thank you.

OP posts:
Tidsleytiddy · 13/06/2023 16:33

My mother survived 4 years and 8 months after diagnosis. She was only 66 x

lifekeepsgoing · 13/06/2023 17:35

Tidsley, I am so sorry you lost your mum at only 66, it is so hard isn't it, our mums are so dear to us.

OP posts:
Tidsleytiddy · 13/06/2023 18:24

Thank you OP. Yes it was a rollercoaster of a time. Good news, bad news and sometimes in between news. 22 years and I miss her every day x

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