Ovarian Cancer

I had a biopsy for a large tumour which came back as "a high grade endometriosis carcinoma" with hormone positivity.

It was removed last month and now confirmed to be ovarian in origin. They now believe it to be low grade - I'm confused by this as it was high grade after the biopsy in January? The surgeon was surprised too because of how quickly it had grown too.

There is a discussion about chemo but the oncologist doesn't think, unless it has spread, it is worth doing. Although it had not gone into any other organ, it had grown into the abdomen (although the ovary was higher than it normally is anyway) and was pushing against other organs - I have a scar all the way down from the breastbone. 

So my questions are:

1. Is it common not have to chemo after this?

2. Why has it gone from being deemed high grade to low grade?

3. Does "spread" only mean if it has invaded other organs then? Because when it was initially found it was already 15x15cm and by surgery, it had grown even more. 

4. If I don't opt for chemo/oncologist chooses not to go down that path etc or, even after chemo, is it usual to have other treatment - eg medication in the medium-long term etc.

  • Hello and thank you for your recent post.

    I am sorry to learn you have been diagnosed with ovarian cancer, this must be such a difficult time for you.

    As a nurse-led service, unfortunately, we are unable to give a second opinion. However, I hope you find the following information useful.

    Whether or not you are given chemotherapy after surgery will depend on several things such as; how much of the tumour was removed, the type of cancer, its size tumour how far it has spread (stage), what the risk of cancer coming back is, as well as a person's general health whether or not they have other health conditions. If all of the cancer has been removed at surgery and if it is felt there is a low risk of the cancer coming back then chemotherapy may not be offered. This is not unusual. 

    It is important to know your situation will have been discussed at a multidisciplinary meeting (MDT)  which will have surgeons, oncologists, radiographers and nurse specialists to make a treatment plan. 

    I cannot say why it has changed from being thought of as a high-grade (fast-growing) to a low-grade (slow-growing) cancer. The grade refers to how fast growing / aggressive the cancer is. This is something you would need to ask your cancer specialist or nurse specialist. The doctors can see how fast growing a cancer is by looking at the pattern of the cancer cells under the microscope which tells the pathologist how abnormal the cancer cells are compared to normal cells. 

    When the doctors look at the stage of the cancer, they are looking to see how far the cancer has spread. This means whether or not the cancer has spread to nearby lymph nodes and if it has spread outside of the ovary and into nearby organs.

    As previously mentioned chemotherapy is the main treatment that may be offered after surgery to reduce the risk of the cancer coming back. At present there is no other long term medication that is recommended.  Again, you may find it helpful to discuss any concerns you may have about not having further treatment and to clarify how far the cancer had spread, with your specialist or nurse specialist (CNS)

    I hope this helps in some way. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday (except bank holidays).

    Take care, all the best,

    Jemma