so many questions

[Kerri1402]

hi all,

I posted about 6 weeks ago regarding my mum who’s ca125 was raised and from that they found a large growth.

She had her surgery today for total abdominal hysterectomy and they removed a tumour the size of a melon. The cancer nurse specialist has already been round and confirmed it is cancerous but they are sending it off for grading?

What is grading?

They have left her womb in but we aren’t sure why. We were told prior that they were going to take it all away but they’ve said it was too attached or intertwined???? Has anyone heard of this before? They also took her appendix out today. Unsure as to why.

My head feels like mash. And with very little answers it’s hard to know the path forward.

many advice would be amazing

[Goingwiththeflow]

Hi Kerri1402 , sounds like it's all feeling a bit overwhelming at the moment. Hopefully you'll get some more information and clearer answers from the oncology team in the near future.

In the meantime, here's some information on grading, taken from this website:

targetovariancancer.org.uk/....

"Grading refers to how similar cancer cells look to normal cells and can help predict how the cancer will behave. This includes how fast it's likely to grow and spread, which may impact on the treatments recommended for you.

There are some ovarian tumours that rarely spread. These are called borderline or atypically proliferative tumours (not cancers).

In the most common type of ovarian cancer the tumours are simply divided into low-grade and high-grade and a grading number isn’t given. The most common type of ovarian cancer is high-grade serous carcinoma. There is also low-grade serous, which is less common. High grade tumours are also more likely to respond to chemotherapy compared to low grade tumours. "

Knowing the stage (how far the cancer has spread) and the grade of the cancer will help the oncologist know what treatment to recommend.

I don't know why they didn't remove the uterus (womb), it's a good question to get clarity on. Don\t feel bad about asking as many times as you need until you understand the answer. It's very important that you and your mum know as much as you can about what is going on, so that you can make the most informed choices about treatment moving forward.

As to why they removed the appendix, I'm guessing it's because cancerous tissue was found in or on it. The surgeons try to remove as much of the cancer tissue as they can during the operation, including removing organs or parts of organs if necessary.

It's very common in ovarian cancer for the cancer to have spread to different parts of the abdomen. In my case, it had spread to my spleen, so it needed to be removed.

I hope your mum's recovery goes smoothly, and that you get some clarity on the treatment path soon!

[wendydee]

I’m sorry you’re going through such a worrying time. The best thing to do is to ring the Ovacome helpline on 0800 008 7054, or email them. They’ll give you some of the answers you’re looking for, I’m sure (there are also a lot of fact sheets on the Ovacome web page. I’m sure you’ll feel much more able to cope and support your Mum, when you have some more information.

Wendy xx

[Beaver54]

hi Kerri.

You’ve had great advice /replies so far, but I just wanted to say that I know how overwhelming things are. I’m 6 months in and still not asking all the questions I need to as there’s something cropping up all the time. It is one big learning curve. This site provides me with most of the answers, or I just call the cancer nurses.. I just wanted to wish your mum well, and you too xx

[Trickysite]

Please don't assume her appendix definitely had cancer. They took out mine and half my omentum and the histology report showed no cancer in either of those places. So you will need to ask the doctor or get the histology report to know for sure. For the record, my report showed OC cancer in both ovaries and fallopian tubes and in my stomach. I wish you and your mum all the best, Emma x

[Tulips66]

Hi, it will take awhile before they can give you all the answers to your questions. I am very surprised they didn't give your mum a book before her op on Ovarian Cancer which has all the information explaining all about grading, types of chemo & lots more in it . Maybe they haven't told you its definitely OC? When they operate they try to take everything they can see with a naked eye, but sometimes the cancer can attach itself somewhere where it is too difficult to get to or it can be too dangerous to remove so there is obviously a reason for leaving her womb. In my case it was wrapped around different parts of my intestine so I ended up with a colostomy bag. I know everything seems bleak at the moment but they will get a multidisciplinary team together(if they haven't already) & come up with a plan for going forward, so as hard as it is for you now try & be patient. Stay positive & strong for your mum & you will get through this together like I & all the other ladies on here have. My daughters were only 16yrs & 19 yrs when I was diagnosed in 2019 & even though I recurred again in 2020 I am feeling well & getting my life back to normal. Best of luck to your mam & let us know how she is doing X Mag

[Kerri1402]

Thankyou for all your replies.

I feel a bit better today as I met mum’s cancer nurse specialist who was able to answer some of my questions.

They have confirmed it is ovarian cancer but they are awaiting the grading. She had her appendix taken out because it’s useless and they don’t leave anything in that it could potentially spread to.

Her ovaries and the tumour was removed as well as her tubes but they did not take the womb as it was stuck to her bladder? She said this was likely to be because of the cancer. So that’s why that was left. She said visibly it looked ok but obviously they will await the biopsies.

Mum had a lot of fluid all the way up to her diaphragm from the cancer so they washed all this away and sent for testing. They also took her omentum away? Not sure what that is or why.

All lymph node biopsies were done aswell. Bless her, she’s been cut from chest right down to her private area and has staples right down. We wasn’t expecting it to be this bad and she’s in awful pain. I’m praying it gets better quickly for her.

Chemo starts in 2 weeks but they are going to wait for the histology to determine what type of chemo she has.

X

[Saintgermain]

Hi Kerri,

I’m in the states my appendix was removed when I had my debulking hysterectomy my surgeon said because if it recurs it tends to spread to the appendix

[OvacomeSupport Partner My Ovacome Team]

Dear Kerri

Thank you for your post, I was really sorry to hear what a worrying time it has been for you and your Mum. I can see you’ve had lots of replies from the MyOvacome forum community which I hope have been helpful.

We understand what an unsettling time this can be, and it makes sense that your head is full of questions. I wanted to reiterate what some members have said in their messages above; the Ovacome support team are here for both you and your Mum. We can provide information resources, respond to queries, or just have a chat about anything that’s on your mind. You can send us a message here on the forum, email [e-mail] or call our freephone support line on 0800 008 7054. We’re here for you Monday – Friday, 10am – 5pm. You can learn more about Ovacome support services here on our website: ovacome.org.uk/Pages/Catego... .

You said that you have some questions about the grading of ovarian cancer. We have some guidance about this in our About ovarian cancer booklet which can be found here: ovacome.org.uk/about-ovaria.... This explains: ‘The grade of a tumour is decided by how the cancer cells look under the microscope. Grading is divided into three groups: one, two and three. It is an indication of how quickly the cancer cells may divide and grow.’ This booklet also explains about the different types of ovarian cancer. We can post this, and any of our booklets to you free of charge, if you prefer? Cancer Research UK have some further information about staging and grading which I hope may be useful: cancerresearchuk.org/about-... .

I hope your Mum’s recovery from surgery goes smoothly and that the histology report provides some clarity about the next steps in her care. Please don’t hesitate to get in touch if there’s anything we may be able to support with.

Best wishes

Annie – Ovacome Support

[Leniko]

The doctor needs to be clearer w you. When I had my TAH, they also took my appendix and omentum. I think it’s pretty common to do if the cancer is near it. Good luck to mom!