They cant find the Primary...

letina · Mar 6, 2005

Oh Sue, I'm so sorry to hear this, it must be dreadful for you, and she's so young :crying2:

I can't help you with anything clinically, but why don't you ask your Aunt if you can get involved by talking to her Doc, or have you (as a family) been given the opportunity yet to access the MacMillan service? What about the Community Nurses? Will there be any input from them? You know what my job is Sue, and I can tell you that we visit a lot of patients who are newly diagnosed, like your dear Aunt. We maintain as much contact with them and their families as they require and if there's anything we can't do, we'll certainly find someone who can. There's loads of support available to you, so make sure you get it. If I can be of any help at all, even if you just feel like offloading, you know I'm here.

My thoughts are with you. (Puts everything into perspective doesn't it?)

Tina

xx

PS : This might help

www.cancerbacup.org.uk/cancertype/unknownprimary

suehp · Mar 6, 2005

Hi Tina,

Thanks for the website - that was really helpful.

My Aunty is being cared for in our big hospital and they are doing a great job - no doubt the Macmillan Nurse will be involved at some point - but we only found out on friday and I only got to speak to her today at the hospital(as she requested no visitors) It is such a big shock to us all and trying to take it all in is very difficult..

Thanks again Tina :)

caroladybelle, BSN, RN · Mar 7, 2005

My Aunt who is only 58 has just been diagnosed this weekend with cancer - they are saying she has secondaries but they cant find the Primary. (why do you think they cant find the primary??)
Apparently the secondaries are outside the bowel in the muscle and a little in the lung and a little in the liver. I care for the elderly and my knowledge of cancer is limited.
SHe has a chest infection at the mo - but are hoping she can start chemo on friday to shrink it and hopefully have surgery thereafter.
Anyone have any good websites where I could read up on this type of cancer or anything really to help me understnad what she is going through...

My thoughts are with you and your Aunt.

I am in the States and our protocols may be differrent than yours. I can only speak to ours.

I do not know of a website for TUO (tumors of unknown origin), but it is my understanding that Vanderbilt in Tennessee, USA handles many cases of these. Questions can also be directed to Sloan Kettering in NYC, NY - USA, Johns Hopkins, Maryland and MD Anderson in Houston, Texas.

TUO are generally listed if the histiology (microscopic appearance and behavior) conforms so poorly to anything that oncologists have known and seen. People have the idea that either cancer is one disease or that we ID the cancer based on which organ that it is on...this idea is incorrect.Most all cancers are different slightly in degree and the type of cancer is determined by what tissue it most closely resembles in histiology. This why we can determine that a growth in the brain, pleural effusion in the lung, mass in the femur is mets/ malignant effusion from a previously treated breast ca and not a new primary in many cases. It is also theoretically possible to have a primary cancer that as diagnosed from its mets, but there may be no tumor at the primary site. This is rare, but not impossible.

TUOs are so bizarrely formed and behave differently from any known cancer or normal tissue that they cannot be defined as emanating from a specified source tissue. And the fact that the patient's immune system did not destroy it is also of concern.

And if you do not know the source tissue, deciding on the treatment regimen is very difficult and not nearly as successful. Think treating a severe bacterial infection when you have little clue as to the infective agents causing it.

If I find any info, I will PM you. But I have seen some patients from Vanderbilt undergoing drug trials for these problems, an my understanding is that they do alot of research in this field.

Carolina

Nesher, BSN, RN · Mar 20, 2005

Another site to look up is the Seattle Cancer Care Alliance site - filled with information for people looking to research a disease.

suehp · Mar 21, 2005

Another site to look up is the Seattle Cancer Care Alliance site - filled with information for people looking to research a disease.

Thanks for that :)

suehp · Apr 25, 2005

Just an update - my Aunty passed away last tuesday very peacefully albeit very quickly. Thanks for your support.

Nurse Hatchett · Apr 25, 2005

Sue

I'm very sorry for your loss, my prayers will be with you and your family during this difficult time, and remember everyone here will be here if you need to talk

Midwest4me · Apr 28, 2005

Just an update - my Aunty passed away last tuesday very peacefully albeit very quickly. Thanks for your support.

My deepest condolences to you, Sue.Thank God she didn't linger long in pain! My thoughts and prayers are with you. It's difficult to be on the "other side" of things isn't it(being the family member of the patient rather than the nurse?) I so sympathize with your many difficult moments.

I decided to look at this thread as my mom has also been diagnosed with cancer(unknown origin) in February after we thought she'd suffered a stroke then found out it's a brain tumor which caused the left-sided weakness. She decided to go for surgery; had 60% removed. She is still living, but was given 3-6 mos(had radiation too). She is 84 but functioning more like a 60 year old and has regained lots of use of the left side now thanks to physical therapy.

I learned a lot from the other nurses who responded to your thread and you, Sue, helped me(as well as others I imagine) by posting it!

God bless you and I'll be thinking of you.

suehp · Apr 29, 2005

My deepest condolences to you, Sue.Thank God she didn't linger long in pain! My thoughts and prayers are with you. It's difficult to be on the "other side" of things isn't it(being the family member of the patient rather than the nurse?) I so sympathize with your many difficult moments.
I decided to look at this thread as my mom has also been diagnosed with cancer(unknown origin) in February after we thought she'd suffered a stroke then found out it's a brain tumor which caused the left-sided weakness. She decided to go for surgery; had 60% removed. She is still living, but was given 3-6 mos(had radiation too). She is 84 but functioning more like a 60 year old and has regained lots of use of the left side now thanks to physical therapy.
I learned a lot from the other nurses who responded to your thread and you, Sue, helped me(as well as others I imagine) by posting it!
God bless you and I'll be thinking of you.

Thank-you for your kind words. We had the funeral yesterday and was so proud of my Aunty as there were hundreds of people there - I have never seen such a big funeral before. There were a lot of nurses there that she worked with and even the Consultant she worked with was there - apparently they had put back the operating list a couple of hours so all staff could attend (She was a theatre nurse and had been for 25 yrs). I will miss her very much but grateful to have known her....

I am sorry to hear that your Mum hasnt been too well but it is wonderful that she is able to respond well to therapy and doing well.

Thank-you once again :)