Waiting for results

FionainScotland

stella65 said:

How are things sweetheart X

How are things sweetheart X

almost full results
I've been so snowed under, thank you for your good wishes, they mean a great deal.
So...Mum had been told the second biopsy results would 'only' be a week, but of course, delayed...

She got sent a discharge note from the hospital which mentioned the poossibiulities (the first time Mum had heard these (but then she probably did not ask clearly enough, as is her way, v different from mine). This said the mass (which is 20 x 8 x 10 or so) and CT were consistant with lymphoma but within the differential were 'desmoid tumour', carcinoid mass( or something carcinoid I forget), mesothe...something, and one other thing which is realted to lots of fibrous tissues bundled together. They had been hinting at lymphoma a few times in the hospital. So, we still had to wait for pathology.

She called on Weds, but nothing. Then this morning a call to go to hospital. Me, Mum, brother went to get results. Went in with young female Dr who had not dealt with Mum before, and she said 'it's not good news or what we had been hoping for'. She said teh biopsies showed evidence of lymphoma. I asked if it was 'lymphoma of the abdominal lymph nodes' and she said yes, but she called it a slightly different name. As I worte before, the first biopsy was inconclusive, and she says out of the next 3, one came back negative which is quite unusual, though not impossible. She says the tissues have therefore been sent to another lab, and these reults are not back yet.

We aksed lots of questions, and I had my notebook. Would they operate? No. Can it be removed/cured? No. Would she have chemo ? Yes (and has appointment at oncology this Monday). DO they know any causes? No...mainly it is Hodgkins which has a more genetic link, but non-Hodgekins doesn't (I think, this is just from memory, not my notebook). I had no idea that lymphoma could not be 'cured', and the Dr said children ar eth ones who do have more chance of cure.

So, they said they biopsied the peritroneum, but it seems like it is not that cancer, but lymphoma (and I still live against all logic and hope this other lab say 'no, it;s juts a Desmoid tumour'.

I just have to nip to drs now but will write more soon. Mum is sleeping upstairs, it;s been a lot ot take in today.

Thanks for all yoru thoughts, and I am thinking of all those who post here too. I really find this site invaluable.
Gxx

FionainScotland

FionainScotland said:

almost full results
I've been so snowed under, thank you for your good wishes, they mean a great deal.
So...Mum had been told the second biopsy results would 'only' be a week, but of course, delayed...

She got sent a discharge note from the hospital which mentioned the poossibiulities (the first time Mum had heard these (but then she probably did not ask clearly enough, as is her way, v different from mine). This said the mass (which is 20 x 8 x 10 or so) and CT were consistant with lymphoma but within the differential were 'desmoid tumour', carcinoid mass( or something carcinoid I forget), mesothe...something, and one other thing which is realted to lots of fibrous tissues bundled together. They had been hinting at lymphoma a few times in the hospital. So, we still had to wait for pathology.

She called on Weds, but nothing. Then this morning a call to go to hospital. Me, Mum, brother went to get results. Went in with young female Dr who had not dealt with Mum before, and she said 'it's not good news or what we had been hoping for'. She said teh biopsies showed evidence of lymphoma. I asked if it was 'lymphoma of the abdominal lymph nodes' and she said yes, but she called it a slightly different name. As I worte before, the first biopsy was inconclusive, and she says out of the next 3, one came back negative which is quite unusual, though not impossible. She says the tissues have therefore been sent to another lab, and these reults are not back yet.

We aksed lots of questions, and I had my notebook. Would they operate? No. Can it be removed/cured? No. Would she have chemo ? Yes (and has appointment at oncology this Monday). DO they know any causes? No...mainly it is Hodgkins which has a more genetic link, but non-Hodgekins doesn't (I think, this is just from memory, not my notebook). I had no idea that lymphoma could not be 'cured', and the Dr said children ar eth ones who do have more chance of cure.

So, they said they biopsied the peritroneum, but it seems like it is not that cancer, but lymphoma (and I still live against all logic and hope this other lab say 'no, it;s juts a Desmoid tumour'.

I just have to nip to drs now but will write more soon. Mum is sleeping upstairs, it;s been a lot ot take in today.

Thanks for all yoru thoughts, and I am thinking of all those who post here too. I really find this site invaluable.
Gxx

to add...
Looked up what the Dr said, she said it was 'follicular lymphoma'. We didn't talmk a great deal about prognosis as the Dr didn't know much herself, and Mum will find out more at oncology. But all I can see re follicular lymphoma is that while incurable and with high recurrance, the survivial and prognosis is so much better than it might have been. Over 3/4 I think get to 10 years, and I even read one with 25 years. There are a few things ot consider, age (over 60) and general health (not good, lifetime smoker), but it might be considered by some people as a chronic condition, just as some on this board like to regard PPC.

Maybe that is all optomistic, her tumour is large and compressing on organs, however, I think we are not to read much into the size, it is the malignancy and this gives hope, especially as one bioopsy was even negative.

I will update this thread next week after Mum has been for her first oncology appointment, but I think it will be the case that I will be 'moving' home to the lymphoma section (and there are so many different lymphomas there is not a great deal on follicular, though there is plenty on the web as it's not uncommon for non-hodgekin's lymphoma types.

In the meantime, (I hope to be back next week to update), I'm almost sighing a big sigh of relief, even though Mum has cancer (which seems odd, but I hope you can understand my meaning). Thank you so much to Sue (stella65), Jessica (lovingmyMom), Liz (MumtoBellaandWilliam) and Carolyn68. It was not just this illness which came into our lives at Christmas, but a whole load of other stresses and problems. I can say probably this is really a crossroad moment in so many ways, and the next weeks and months the other things, not health related, may even get worse before they get any better. I am trying to see some hope, and clinging to it desperately. Your replies meant so much to me, and I thank you frmo the bottom of my heart, I even wrote to the forum while sitting waiting in the hospital. I felt warmth from your replies, and I felt as if someone cared, and even though you never met me, you sent that warmth, from far afield. I wish I could give eahc of you a hug just now, and so I am sending you one (( )) (is that how it goes??). Thank you so much.

Mum2bellaandwilliam

FionainScotland said:

to add...
Looked up what the Dr said, she said it was 'follicular lymphoma'. We didn't talmk a great deal about prognosis as the Dr didn't know much herself, and Mum will find out more at oncology. But all I can see re follicular lymphoma is that while incurable and with high recurrance, the survivial and prognosis is so much better than it might have been. Over 3/4 I think get to 10 years, and I even read one with 25 years. There are a few things ot consider, age (over 60) and general health (not good, lifetime smoker), but it might be considered by some people as a chronic condition, just as some on this board like to regard PPC.

Maybe that is all optomistic, her tumour is large and compressing on organs, however, I think we are not to read much into the size, it is the malignancy and this gives hope, especially as one bioopsy was even negative.

I will update this thread next week after Mum has been for her first oncology appointment, but I think it will be the case that I will be 'moving' home to the lymphoma section (and there are so many different lymphomas there is not a great deal on follicular, though there is plenty on the web as it's not uncommon for non-hodgekin's lymphoma types.

In the meantime, (I hope to be back next week to update), I'm almost sighing a big sigh of relief, even though Mum has cancer (which seems odd, but I hope you can understand my meaning). Thank you so much to Sue (stella65), Jessica (lovingmyMom), Liz (MumtoBellaandWilliam) and Carolyn68. It was not just this illness which came into our lives at Christmas, but a whole load of other stresses and problems. I can say probably this is really a crossroad moment in so many ways, and the next weeks and months the other things, not health related, may even get worse before they get any better. I am trying to see some hope, and clinging to it desperately. Your replies meant so much to me, and I thank you frmo the bottom of my heart, I even wrote to the forum while sitting waiting in the hospital. I felt warmth from your replies, and I felt as if someone cared, and even though you never met me, you sent that warmth, from far afield. I wish I could give eahc of you a hug just now, and so I am sending you one (( )) (is that how it goes??). Thank you so much.

Hi , I am glad you are
Hi ,

I am glad you are getting somewhere with your mums diagnosis , it is unbearable waiting , I remember it myself.
I also am pleased that it sounds a little more treatable than PPC, hopefully they can keep it at bay for Many years to come. I can always remember saying to mum trust you to get a really rare one! I can also remember saying to people no cancer is good to have but mum has a particularly nasty one, so I get what you are saying.
Replying was a pleasure, I too remember those first few months of utter panic and desperation, it will get easier I promise, you learn to go with the flow, you cannot change what has happened and you have to make the best of a bad situation ,you are in a really good place coming on these boards.
God bless you and your mum, good luck with your journey xxxxx Liz xxxx

stella65

FionainScotland said:

to add...
Looked up what the Dr said, she said it was 'follicular lymphoma'. We didn't talmk a great deal about prognosis as the Dr didn't know much herself, and Mum will find out more at oncology. But all I can see re follicular lymphoma is that while incurable and with high recurrance, the survivial and prognosis is so much better than it might have been. Over 3/4 I think get to 10 years, and I even read one with 25 years. There are a few things ot consider, age (over 60) and general health (not good, lifetime smoker), but it might be considered by some people as a chronic condition, just as some on this board like to regard PPC.

Maybe that is all optomistic, her tumour is large and compressing on organs, however, I think we are not to read much into the size, it is the malignancy and this gives hope, especially as one bioopsy was even negative.

I will update this thread next week after Mum has been for her first oncology appointment, but I think it will be the case that I will be 'moving' home to the lymphoma section (and there are so many different lymphomas there is not a great deal on follicular, though there is plenty on the web as it's not uncommon for non-hodgekin's lymphoma types.

In the meantime, (I hope to be back next week to update), I'm almost sighing a big sigh of relief, even though Mum has cancer (which seems odd, but I hope you can understand my meaning). Thank you so much to Sue (stella65), Jessica (lovingmyMom), Liz (MumtoBellaandWilliam) and Carolyn68. It was not just this illness which came into our lives at Christmas, but a whole load of other stresses and problems. I can say probably this is really a crossroad moment in so many ways, and the next weeks and months the other things, not health related, may even get worse before they get any better. I am trying to see some hope, and clinging to it desperately. Your replies meant so much to me, and I thank you frmo the bottom of my heart, I even wrote to the forum while sitting waiting in the hospital. I felt warmth from your replies, and I felt as if someone cared, and even though you never met me, you sent that warmth, from far afield. I wish I could give eahc of you a hug just now, and so I am sending you one (( )) (is that how it goes??). Thank you so much.

Still thinking of you
Hi Gail, your post was lovely, I wanted to give you some support, firstly because I know how it has helped me to find the support of this forum and secondly just because I feel your pain, of course I do, I don't need to have met you, I know the feeling of complete worry, feeling helpless, feeling angry, feeling sad, the list goes on! I am glad you have a bit more info now and I hope your mum can get the treatment she needs and deserves, sending a great big hug right back at ya! Take care of yourself as well as your mum X

wanttogetwellsoon

Hello
Hello....
First of all, I'd like to say that my heartfelt love goes out to you, your mum and your family.

I was in the very dark place your mum has been in. I've had many major operations on my abdomen over the years. Just when I thought I was ok, another scenario turned up last March. Yes, I did have cancer but first of all, I think it's a good thing to wait to see what the doctors tell you. It's not always cancer and, even if it is, there are different stages and different grades of the disease. It depends on where the cancer is too just how serious it is. Many people do get well these days.

I know it might not help, and I'm only saying this because you posted. It's natural to feel upset when someone close to you is diagnosed with cancer. People with cancer themselves sometimes have these feelings. So in feeling the way you do, it's normal and possibly part of the healing.

When I was first diagnosed, I had the exact opposite feelings. I felt calm though I was in a very dark and low position. Everyone is different. My husband felt helpless.

I tried to analyse what was happening to me and my feelings. What I came up with was that no matter what had happened to me in my life, no matter what I had sacrificed for others or for myself. No matter what I did or what others did, nobody was to blame. Cancer just happens. It seems unfair that I could have done things differently in my life had I known I would not live to a very huge age, but foresight is not something we are blessed with. I decided to make the diagnosis of what I had, not an ending, but a beginning.

Once my abdomen was drained, I felt much better. The pressure was reduced and, although I felt very tired, I was allowed out of hospital. I felt very low during the first week of each cycle of chemo, but after the treatment, I improved again. Now, although I'm not the same as I was before diagnosis, I get by and am happy even though I know it will return soon. I feel that life is great and I try to do things which will give me a positive outlook.

Nobody wants those around them to feel miserable so I told my husband, friends and family that too. I know it's hard for him and he has his low points. He keeps it from me but when he's upbeat, we talk about things calmly which he says helps. My husband is going through the same thing as me even though he doesn't have the illness.

I very much hope that your Mum is on her feet soon. With the love that you so obviously have for her, I know she'll have a lot of support.