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The doctors seem unsure which is my husband's primary cancer...lung or prostate. As it has spread to bones and tissue do we need to know? They say bone biopsy could be painful and not necessarily conclusive?!
Hi, I think bone is the first stop from both so it is difficult to make a guess and as you say, they know it's there, is it important to find the source. How will they treat him? Logic says that if it's from the lung, lung chemo will attack it and vice versa. Hopefully his treatment plan will sort them all so it may not be worth putting him through it. Hugs x
My dad had a bone biopsy and it was a bit sore but not unbearable. Certainly not as painful as the trouble from the bone itself anyway! It's possible that discerning which is the main cancer might have a bearing on which chemo regime he's offered but that's just a guess, I don't know. I'd go with what they say unless you think something is glaringly wrong, the oncologists are usually pretty good. All the best, Vikki xxx
You should try and understand their position: they are guessing always..sure they have statistics, and tests, but in the end there is always a margin of doubt.
In the end all they can do is find some basis on which to act: In this case you should ask them what difference it would make to the proposed treatment. If the answer is 'not a lot' then the benefit of having the test is questiobale. If in the other hand it makes a complete difference then the pain is worth it for a better chance.
I suspect this is too late to be of help to you, but I thiought it worth posting anyway.
This is my first post. I am trying to figure out how to make my font larger. I have CUP and was diagnosed with this two and a half years ago. I initially had a tumor on the lymph nodes of my neck on the right side of my face. I had surgery and it has not come back. After that they found a mass in my right lung and that mass was surgically removed. Four months later a new mass was found in my right lung near lymph nodes. Location could best explained by saying it is in the area above my right nipple near a lymph node in my right lung. It is in a different area than the first lung mass.
Since I was first determined to have Stage 4 CUP as it has moved, This new mass did not surprise my doctors. But they still do not know where the source of the cancer is coming from. This time I cannot receive surgery. I have been give three options with one being chemotherapy, two being radiation and three being do nothing. I will be getting a second opinion soon.
I will be getting a second opinion soon, but I am scared and just trying to understand as much as I can. I am 71 years old and a Caucasian. I am happy to be part of this discussion group and hope I can chat with people who have unknown source primary or anyone who might know about my type of cancer. Best wishes, John
Hello happysenior I have just come across your post, quite by accident really, with your post added onto an old 2011 post, I’m thinking that due to the post being 7 years old that’s why no one from the original post has answered as they may no longer be using the site.
Apart from trying to sort the font out, (and I had a look in your latest activity and saw that admin contacted you about that) I saw you had CUP and wanted to chat with others about it.
There is a cancer of unknown primary group on here, I will put a link in for you to click on https://community.macmillan.org.uk/cancer_types/unknown-primary-cancer/discussions
My primary cancer was not found but the biopsy to my lymph nodes diagnosed it as melanoma, so I don’t know go in that group often but if you still wanted a discussion I thought although very late in suggesting this I wondered if that might help.
If you think the group will help click on start a new discussion while you are in there.
There is also the support line that admin might have mentioned as well.
Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.
Hello, I want to thank the individual who wrote me about my inquiry about CUP. I did not realize there was a group on the MacMillian site and will try to get as much information from the posts there.
I still have CUP and a new growth. I have been given a number of months to enjoy my life and then I must come up with some kind of plan for treatment - chemotherapy, radiation or do nothing.
I live in Japan and went back to the States hoping that Mayo Clinic would look at me. Without health insurance, and lack of enough information for the hospital, I was turned away.
I just wanted to thank you again.
P.S. This font is so small. I do not know how to make it larger without copy and pasting using a separate document. I will learn how to do that next time.
Hello John, I am glad you like the link, incidentally one of my daughters lives in Japan and has done for 4 years now, having got a job there before my diagnosis. I am sorry to hear you were turned away from the hospital, it makes us here in the U.K. really appreciate the National Health Service that we have access to here.
I must admit that I was hoping that with further investigation you might have found out what type of cancer type you have so that they could determine what treatment was your best option.
Best wishes Katrina
Nice meeting you. If you would like to add me to your Facebook, please do. My name is John [Edited by admin]. There may be more than one.
Or if you would like me to call your daughter for you, I can do that anytime. I have lived in Japan for 48 years. I taught English for 48 years and recently retired on Mar. 31 of this year.
I was diagnosed with CUP about two and a half years ago. What they first thought was lung cancer, they could not make
sense of what normally takes place when it moves, so they ruled out lung cancer. I have had six operations with three in about hte same place - my back left thigh. These were diagnosed as sarcoma and all surgically removed.
Then I had a tumor in my neck (lymph node) and that was surgically removed and cleaned up with 30 radiation treatments. I lost my taste buds for half a year and lost the ability to create saliva completely. I could only hear about 30%. The taste buds and the hearing came back. The radiation treatments took away my ability to create saliva for the rest of my life and I feel numbness along the side of my right neck from are to middle of neck. The neck tumor was squamous cell. Apparently the thigh tumors and the neck tumor and a later lung tumor that I recently had removed are not related.
Upon a recent PET CT scan, they found a new growth once again in my lung but this time it is is inoperable.
I guess my biggest question is this. Is there anyway to treat a CUP patient other than chemotherapy, radiation or do nothing? How about immunotherapy (sp?)?
I have been careful what I am eating, walking a lot, singing a lot and trying to enjoy my life with as positive an attitude that I can have. I am the longest standing foreign patient here in Japan with six operations. I am considering using the V.A. (army related experience) to visit a hospital and possibly getting referred to a famous hospital. The V.A. might pick up the tab.
My insurance here in Japan is excellent and the facility I am going to is top class. I trust my doctors and even had a second opinion at the national cancer research center in Tokyo. It was at the second opinion conference that my doctor told me to enjoy my life for two or three months and then have a plan. And I reiterate when I say .. that plan being chemotherapy, radiation treatment or doing nothing. I was told my new tumor which is 1.4 centimeters would grow in time and eventually move to my bones .. I would have trouble breathing at first.
So this is my story for now. I just need a ray of light.
Glad to meet you Katrina,
P.S. I will resechedule a PET CT scan this Tuesday. They will learn if my tumor has grown, stayed about the same or is in remission (what a dream that would be). Just wanted to mention this. I was supposed to have this scan last Tuesday, but I caught a cold.
In the U.K. Immunotherapy treatment isn’t yet offered to all cancer types, for my cancer type metastatic melanoma it is because chemo has a low success rate and is not usually offered. There are 3 different Immunotherapy drugs available but they don’t work on all people, and they have no way of telling as yet who it would be successful for. Fortunately for me mine Pembrolizumab is doing ok or was at my last scan, I have scan results soon where I am expecting the good start to continue.
There is an ask an expert section where a Macmillan professional will reply to questions about treatment, but the replies can only say what’s available in the U.K. but I imagine the same and possibly more being available where you are depending on your insurance. Macmillan have booklets in the resource section on all types of cancer including CUP it’s sometimes difficult to get your head around I would imagine why doctors dont know what type of cancer it might be and wether a treatment may or may not work. It’s really good you were able to get a second opinion it can give more confidence if two doctors agree on how to proceed. It sounds like after this scan you are expecting to have a big decision coming up on which way to go next. I’m glad you have had some time to enjoy life over the last few months.
There is a group on this site for people with an incurable or terminal diagnosis where patients talk about making the most of the time they have left and also dying they have a good rapport together. I will place in the link for you to find and have a look, just click on join the group then start a discussion if the group seems suitable.
I hope you find the ray of light that you need.
best wishes Katrina
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