Niece just diagnosed - need information

nikkers

My niece who is 28 went in to have a cyst removed from her ovary by keyhole surgery Friday before last. Once they were in there instead of removing the cyst they took tissue for a biopsy. She lives in England and I am here which is very frustrating as things seem to be moving so slowly. Her results didn't come back until last Wednesday, five days later, and she met with specialists yesterday (a whole week after the keyhole surgery) along with my brother and his wife. They have diagnosed ovarian, colon and possibly peritoneum cancer. We are absolutely devastated. They are going to do a colonoscopy next Friday to decide what is the primary source of her cancer before starting chemo, and surgery is scheduled for "sometime" mid November - she is on their "Urgent" list.
We are all so worried about her and her future, (she has a one-year old little boy). I guess my question is, is this the normal procedure from your experience and is it really care progressing as slowly as I feel it is? I would have thought they would be moving so, so much faster. I realize they have to be sure they are approaching the situation with the correct medication but still....
I would like to be able to offer support to my brother but need to have something positive or be positive about treatment there. Thanks so much for your help

Hissy_Fitz

I am very sad to hear that
I am very sad to hear that this awful disease has struck another victim, and such a young woman, too. It's hard for any of us to say for certain what is "normal" and what isn't, with regard to treatment. We aren't doctors, for one thing, and we don't know many of the key elements of your niece's case.

It is very common to do chemo before any surgery is attempted when the cancer is wide-spread. The idea is to shrink the tumors, which in turn makes for a more successful surgery.

They need to know the source of her cancer in order to develop the best plan for treatment. Ovarian cancer, for instance, is known to respond well to a certain cocktail of drugs (usually Carboplatin and Taxol for first line treatment), while colon cancer responds better to a completely different group of drugs.

My surgery took place about 2 weeks after I was diagnosed, and it was another month before I started chemo.

Please let us know how she is doing, and what the exact diagnosis turns out to be. We are always here for her, and for you.

Carlene

Mum2bellaandwilliam

I am in the uk
Hi ,

Sorry to here your news, it is very sad that your niece is so young. My mum has been diagnosed with PPC(peritoneal cancer) we have gone through the NHS and I have to say they have been fantastic. Mum had 3lots of chemotherapy before her surgery in order to reduce the size of the tumour , the surgeon has managed to remove all trace of it with the naked eye. It does all seem to take a while especially in the early days, but once diagnosed things moved very quickly. However we were told that if she had been at Norwich hospital she would have had to wait a month for her chemotherapy to start as they have a back log. I don't think we could have done that, a month is a long time to sit on your laurels!
I would wait until they have done the colonoscopy and see how quickly thing move forward, as. I said my mum was very lucky and started chemotherapy within the week . I also happen to know (don't know if this is true with all uk hospitals) that all the specialists and consultants get together once a week to discuss everyones cases and see what the best course of action is , what I am saying is , if your appointment is Tuesday and they have there get together on a monday, you have to wait for a week to find out what they are going to do!
Wishing your niece the very best of luck.

nikkers

Mum2bellaandwilliam said:

I am in the uk
Hi ,

Sorry to here your news, it is very sad that your niece is so young. My mum has been diagnosed with PPC(peritoneal cancer) we have gone through the NHS and I have to say they have been fantastic. Mum had 3lots of chemotherapy before her surgery in order to reduce the size of the tumour , the surgeon has managed to remove all trace of it with the naked eye. It does all seem to take a while especially in the early days, but once diagnosed things moved very quickly. However we were told that if she had been at Norwich hospital she would have had to wait a month for her chemotherapy to start as they have a back log. I don't think we could have done that, a month is a long time to sit on your laurels!
I would wait until they have done the colonoscopy and see how quickly thing move forward, as. I said my mum was very lucky and started chemotherapy within the week . I also happen to know (don't know if this is true with all uk hospitals) that all the specialists and consultants get together once a week to discuss everyones cases and see what the best course of action is , what I am saying is , if your appointment is Tuesday and they have there get together on a monday, you have to wait for a week to find out what they are going to do!
Wishing your niece the very best of luck.

My Niece
Thank you so much for your answers... I've been chomping on the bit, worrying away, researching like mad. I've talked to my brother since writing yesterday and the diagnosis is unfortunately positive for peritoneal cancer as well - we are so much in shock... she is such a lovely and kind young woman to be faced with this awful disease - we all wish we could give her some of the years we have left so that she could see her son grow up.
Thank you for the reassurance about the NHS. My niece is in Cheltenham and by your account they are moving along at a normal pace for the NHS which by the way is a wonderful service and she is so lucky that at least she is not faced with the financial worries she would have in this country. The good thing about here (States) is that they have so many options for choosing your service, for instance you can go to a top notch cancer center in the country, but even with the recent change in the law about being able to move your care to whichever care facility you want, in England it doesn't apply to cancer - the best being all around the London area. My understanding is that she needs a gynaecology oncologist, but I can't tell if they have one on staff there, but did see that they do something like 114 hysterectomies a year for ovarian cancer. I have to put my trust in the care they are providing. I have found out that there is a Maggie Center right there in Cheltenham which does give me hope.
I've been reading through posts about this cancer and am relieved to see that some have been surviving for five years, which we would have to take as a blessing as some things I've read say prognosis is 12-26 months.
I will keep you posted as to her progress and thank you so, so much for responding. Nikky

Tina Brown

nikkers said:

My Niece
Thank you so much for your answers... I've been chomping on the bit, worrying away, researching like mad. I've talked to my brother since writing yesterday and the diagnosis is unfortunately positive for peritoneal cancer as well - we are so much in shock... she is such a lovely and kind young woman to be faced with this awful disease - we all wish we could give her some of the years we have left so that she could see her son grow up.
Thank you for the reassurance about the NHS. My niece is in Cheltenham and by your account they are moving along at a normal pace for the NHS which by the way is a wonderful service and she is so lucky that at least she is not faced with the financial worries she would have in this country. The good thing about here (States) is that they have so many options for choosing your service, for instance you can go to a top notch cancer center in the country, but even with the recent change in the law about being able to move your care to whichever care facility you want, in England it doesn't apply to cancer - the best being all around the London area. My understanding is that she needs a gynaecology oncologist, but I can't tell if they have one on staff there, but did see that they do something like 114 hysterectomies a year for ovarian cancer. I have to put my trust in the care they are providing. I have found out that there is a Maggie Center right there in Cheltenham which does give me hope.
I've been reading through posts about this cancer and am relieved to see that some have been surviving for five years, which we would have to take as a blessing as some things I've read say prognosis is 12-26 months.
I will keep you posted as to her progress and thank you so, so much for responding. Nikky

Hi Nikky
I have PPC & also live in the UK. The NHS is wonderful and I owe my life to all the doctors and nurses who were there when i was first diagnosed as they didn't know where my cancer was. I had fluid around my lungs and needed a chest drain (or 2!!) and they sure acted quickly to treat my symptoms and find out where my cancer was coming from. Once diagnosed my chemo started quickly and I had a good result.

I have every faith she will be treated quickly and thoroughly and as she is so young will have youth on her side as she goes throught her treatment.

Take care Tina xx

nikkers

Tina Brown said:

Hi Nikky
I have PPC & also live in the UK. The NHS is wonderful and I owe my life to all the doctors and nurses who were there when i was first diagnosed as they didn't know where my cancer was. I had fluid around my lungs and needed a chest drain (or 2!!) and they sure acted quickly to treat my symptoms and find out where my cancer was coming from. Once diagnosed my chemo started quickly and I had a good result.

I have every faith she will be treated quickly and thoroughly and as she is so young will have youth on her side as she goes throught her treatment.

Take care Tina xx

Niece
Thanks so much for your reply Tina. It does help so much to hear from you and the other poster from England about the great service you feel you are receiving. It all just seems so horribly slow when you're wishing they could start treatment immediately if not sooner! I have found out through more sleuthing that Cheltenham does in fact have a gynaecological oncologist Consultant on staff and I think I am beginning to breathe, hope and calm down a bit. Thanks again, Nikky