Have you or someone you love been diagnosed with Cancer of Unknown Primary? Share you story here.
Share your story
(24 posts) (10 voices)-
Posted 1 year ago #
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I have been searching for a website like this one since 2005. My youngest, daughter, Alison, died from CUP on January, 5, 2008. I need to do something to make peace with this. There is no getting over it or through it or making sense out of it. I suppose the ultimate question is 'why?"
With treatment she lived 1 1/2 years. They never found the primary. Alison left a husband and a two-year old son.
I will post and read more at a later time.Posted 1 year ago # -
Thank you for sharing your story on our forum. Again, I am so sorry to hear about the loss of your daughter. Loss is never easy, especially when it's someone so young. It is my hope that through this forum, those of us that have been affected by CUP can comfort each other and help each other find peace. I look forward to keeping in touch with you.
Tara
Posted 1 year ago # -
Hi my name is Lori and I am a 40 year old mother of 2 diagnosed with CUP in October of 2007. I have numerous lesions on my liver which make it a no go for any kind of surgery. I have been doing chemo for 2 1/2 years now and am able to live a fairly normal life - a new normal I guess you could say.I love that I found this website. Most people just can't understand what CUP is. It is hard for them to comprehend that a person can have metastatic cancer but not know where it came from. I have been on MANY different chemos so if I can answer any questions please feel free to ask! Best of luck to all who have been affected by this awful disease.
Posted 1 year ago # -
Hi Lori and thank you for sharing your story on our forum! I am sorry to hear that you are fighting CUP, but happy that it seems you have been doing well. Hopefully our forum will be found by many, so that you can have some support from people who understand what you are going through, and also to share stories and possibly find some success in each.
If I may ask, where did you first find a lesion/tumor and how did you know to get checked? My mother-in-law first had scatic nerve (area) pain, and found a tumor in her kidney. I am curious if there are any similarities between the CUP patients.
Best of luck to you in the future. Please feel free to contact me at any time. tara@stroudcup.org I look forward to hearing from you often and hearing updates on your journey.
Tara
Posted 1 year ago # -
Hi Tara - The way my CUP was found was really weird. I had high blood pressure (really high) and none of the risk factors for having it so my doctor was worried about my kidneys and sent me for an ultrasound. My kidneys were fine but that is when the lesions on my liver were discovered. I had many more tests and kept being told they were benign hemangiomas and not to worry. It was left at that and I was scheduled to see a liver specialist 6 months later "just to be safe". Well in the mean time I had a gallbladder attack and had to have it removed and as I was about to go under for surgery I joked with the surgeon to look at my liver while he was in there and see if he thought he needed to do a biopsy. He did thank goodness and it came back adenocarcinoma. So had it not been for my gallbladder who knows what shape I would have been in had I waited 6 more months! I just had a scan yesterday and the news was mixed. My liver lesions look the same maybe smaller but the few I had in my lungs are larger and there are lots more. So I am trying to get into a clinical trial - but my liver enzymes are to high right now for me to qualify. I am off of everything for 3 weeks to see if they will come down. Keep your fingers crossed for me! Thanks so much for the website! Lori
Posted 1 year ago # -
Lori,
Thank you for sharing more details about your story! Thank goodness for the gallbladder attack, and subsequent surgery to be able to find out what was truly going on inside your body. I certainly hope everything works out for you and you are able to get into a clinical trial soon. Fingers are definitely crossed. In the meantime, feel free to discuss anything with us on the website. It is my hope that this forum is a source of comfort for those affected by CUP. Best of luck to you over these next few weeks and always....
Tara
Posted 1 year ago # -
My mom was diagnosed with CUP in May 2009. She has been on chemo since then (Gemcitabine and Xeloda). Her scans show liver mets but no primary. SHe has done scans every 3 months since and it appears that it is stable. She did a scan last week and we are getting the results on August 19th. We are very nervous as she is in pain around her liver and we do not know what it may be from.
Lori, what treatment have you tried ? were you//are you in pain ?
Ingrid
Posted 1 year ago # -
Hi Ingrid,
Sorry it took me so long to respond. These past few weeks have been crazy. After countless trips to see Dr. Greco in Nashville it looks like I do not qualify for a study at this time. My liver function test scores and ascites in my abdomen are keeping me out. So it looks like I am going to give chemo emobilization a try to see if the lesions will shrink and my liver will behave enough to get me into a study in the future.
I am really sorry to hear about your mom and what she is going through.
As far as treatments I have been on: I started with Carboplatin, Taxol, Avastin, and a pill called Tarceva. Then tried a drug called Alimpta and Avastin. Then moved on to 5FU, oxaliplatin(sp?), and the pill Xeloda. I have also had the pill Nexavar also called Sorafinib. I had Irinotecan at some point. Then back on Carboplatin and Taxol. I think that is about all. I may have missed one.
I have always had pain in and around my liver. Sometimes it is worse than others. I hate to say it but I think pain may just be part of it as the liver is enlarged. Please know that she does not have to be in pain though - there are many good pain medicines out there that can get and keep it under control. I have taken something for my pain all along and it makes it so much better.
I wish your family the best of luck and please feel free to ask me any questions - I am glad to help in any way I can!
Lori
Posted 1 year ago # -
Hi Everyone,
I hope that everyone is ok - Lori, I think we have spoken before on Cancer Compass, and Tara , so did you - thank you for replying to my post and directing me to your lovely website.
My lovely Mum was diagnosed with Cancer of Unknown Primary in May this year. We are from the UK, I was living with my boyfriend in London at the time and then she rang and told me they had found cancer in her lungs, it was a massive shock - she had been to stay with us for a weekend a few weeks before and we had a ball. We later discovered that the primary originated from somewhere else rather than the lungs but they couldn't locate it.
My boyfriend and I immediately moved back home to Yorkshire - having family nearby I believe has really helped my mum be as strong and as positive as she needs to be and we have a 'girly night' every wednesday night consisting of watching films and having a couple of glasses of wine together! We also make sure we have lots of shopping trips at weekends too haha!
It then spread to her lymph nodes but soon after (what seemed like forever) the doctors finally started her treatment. They can't cure her but it is treatable.
She has just received the results back from her first scan since her treatment started today and the Consultant said today that it is working! This was such fab news as we were worried that Mum was having alot of pain in her side and swollen feet, pain in her shoulders, but the doctor said this was caused by the trauma her diaphragm suffered when they were draining fluid from the lungs.
Needless to say I have been going around with a great big smile on my face this afternoon! I just wanted to say to all of you that when we first found out it was totally completely and utterly horrendous and my mum is my bestest friend, the possibility I may lose her crushed me, but after time, we have adjusted to the situation and our bond and love for each other means that we give each other the strength to be positive.
As a family we always try and do things together and a couple of weeks ago my mum had her 49th birthday and I organised a surprise birthday do for her with friends and family and we had it in a restaurant with balloons and cake - it was magical and her face was a picture!
I truly believe that staying positive is the key, life is precious, fill your life with people you love you and make you happy.
As they say, when life throws lemons at you - make lemonade!
Much love
Natalie
Posted 1 year ago # -
Hi Lori,
I am so happy to see your message today. My mom has been off treatment for the last few weeks. She was tiered from her treatment and the doctor wanted to give her some time off to recover. She is currently on vacation with my dad but they are not having that great of a time because she is in pain. what pain medication have you been on ? I will try to get her a oncologist to give her something.
Did you ever have bumps that show up on your body and then disapear a few hours later ? She has these odd bumps that come and go on her arms, legs and back. They stay a few hours and then leave. odd...
You seem like such a postive person :) how do you do it ? what motivates you to keep on fighting and being positive ? My mom is very sad and is having a hard time dealing with all this. I want to help but i am not sure what to do.
Did you contact Dr. Greco directly to get his opinion on your condition ? Do you know would i have to go about it if i wanted to send my mom's file?
Also, have your doctors ever tried to find the primary source ? My mom's oncologist said it was almost impossible to find so no further tests have been done in the last few months.
I know this is alot of questions, and i am sorry. I feel like you really understand what we are going thru.
Thank you again for your time and your answers, it is all very useful and appreciated.
Ingrid
Posted 1 year ago # -
Hi Nathalie,
I read your story and i can relate so much. My mom was diagnosed in May 2009 and since things have been so up and down. My boyfriend and I decided to get married within a 2 month delay so that she could attend. We were not sure what the future would bring us.
Everyday we try to make her smile and go out but it is hard. You have to keep fighting and be positive. That is what i try to do, but it is soo hard.
BE strong and BE positive ! That is what will get us all thru these times !
Ingrid
Posted 1 year ago # -
Thank you all for continuing to post and offering support to each other. It is my hope that the news of our foundation continues to spread and that many more come to share their stories of hope and courage. I wish nothing but the best for you all.
Please also feel free to start your own threads of there is a topic of interest for you to discuss.
Take care.
Tara
Posted 1 year ago # -
I am a male 51 years young and in relatively good shape. In a hospital visit (for other reasons) they found an enlarged lymph node in my lower right neck thru CT scan and ultrasound. I had it surgically removed and it was diagnosed as Undifferentiated Squamous Cell Cancer. Since then (AUg 13) I have had CT Scans, Contrast scans, PET scans, endoscopy, colonoscopy, a tonsil removed, throat samples and tongue samples, ALL WITH NEGATIVE RESULT. So now they are mentioning "Unknown Primary". My original Pathology slides have now been sent to MD Anderson and their pathologists are going to look at them and call us for appointment. Has anyone gone through this or can give me places to go for best information / treatment? Is MD Anderson the best???? HELP - dazed and confused.
Posted 1 year ago # -
Hi Hedgemo!
I posted a reply to you the other day and apparently it didn't actually post. Sorry about that.
At any rate, I'm sorry to hear you are going through this. From my experiences with my mother-in-law being diagnosed with CUP, MD Anderson truly is one of the best oncology centers out there. I know there are a few doctors there that specialize specifically in CUP, so hopefully they can give you the answers you are seeking. If not, Dr Greco at the Sarah Cannon Center in Tennessee is a world-renowned oncologist that is leading the fight against CUP. Both of the website links can be found on our website under "resources".
I hope you continue to post updates here on our site and that others going through the same thing can offer you support and vice versa. Part of our mission is supporting patients and caregivers, so I hope you can find that here. Best of luck to you throughout this process. I wish you nothing but the best and hope for a positive update from you soon.
Take care.
Tara
The Stroud FoundationPosted 1 year ago # -
Hello all,
I am so happy to have found this site. My mother in law was recently diagnosed with cup. However, her pain began in her back and a tumor was found at the base of her spine with several mets throughout her spine. She was in a tremendous amout of pain and were unable to find cancer anywhere else in her body. They biopsied her tumor and diagnosed her with adenocarcinoma with unknown primary. A PET scan showed a small lymphnode but no primary source. They are currently proceeding with radiation to help the pain and PET scans every three months.
I was wondering if anyone ever heard of a case like hers and if Dr. Grecco is recommended in her case.
Thanks
MichellePosted 1 year ago # -
Hi Michelle!
Thank you so much for sharing your story. I hope the radiation helps your mother-in-law tremendously. My mother-in-law started with pain in her tailbone area and there were tumors in one kidney and on her sacrum at the beginning. She was diagnosed with CUP and they were never able to determine the primary source. I understand what you are doing through and hope that you find the answers you are looking for and the support that you need here. Please keep us updated on your mother-in-law and I wish her nothing but the best. If you'd like to ever contact me, my email is tara@stroudcup.org. I certainly know the role of a daughter-in-law in a time like this. It certainly isn't an easy one. Best of luck to you too.
Tara
The Stroud FoundationPosted 1 year ago # -
Hi, I am so happy to find a foundation for CUP that is (I'm assuming) based in the U.S. I also am registered with the one in the UK. I just can't believe it's been so hard to find one for this cancer. It's somewhat rare, but I've learned it's not as uncommon as I used to think.
I'm 28 years old and I was dx with CUP in December of 2008. I just had my two year anniversary. I had a tumor on my right ovary that was found to be a Krukenberg tumor, which is basically a metastatic tumor. They said usually it comes from the stomach so we immediately assumed I had stage 4 stomach or colon cancer. After many tests and scans however there was nothing in that area. I did have two lymphnodes that "lit up" on the PET scan that were believed to be cancerous. One was near my collarbone and the other on my sternum. I also had a small tumor on one of my lower, right rib bones. So, I had cancer that presented in my ovary, two lymph nodes, and on bone. They still have no idea where it came from. I was treated for 4 months with Taxol/Carboplatin and had 10 rounds of radiation to the tumor on my rib bone. Treatment was overall successful, however shortly after I had several lymph nodes in my abdomen region begin to light up. They have been "watching" these for about 18 months. I will have to begin treatment again soon because I now have been diagnosed with kidney disease. My doctors believe the cancer in the lymph nodes is causing the kidney disease, which is progressing.
I see Dr. Greco along with another oncologist in Nashville, TN. I happen to live here, so was lucky to have him in my backyard. I find him to be very competent and compassionate. Please feel free to ask me any questions about my experience. I hate to see that so many have experience with this illness, but am glad to have others to talk to who TRULY understand the frustrations of this disease. Cancer is horrible enough, but then having to deal with one that is "hidden" and tricky is awful. I continue to fight and to hope and encourage us all to do so.
Elizabeth
Posted 1 year ago # -
Hi Elizabeth!
Thank you for sharing your story on our forum. As you may have read in the recent posts, we are a CUP foundation here in the US. We only just launched in 2010, so we are very new and looking forward to raising awareness of CUP across the country. This forum has seen a variety of patients so far and it is my hope that we continue to grow and truly build a support system for those diagnosed with CUP. If you know of anyone else experiencing the same as you in and around Nashville, please feel free to send them to our site.
Best wishes to you and good luck with your continued fight. I am happy to hear that you have been fighting for two years now, that is wonderful. Never give up! Keep in touch!
Tara
Posted 1 year ago # -
Hi Everyone,
Just registered with the foundation and thought that I should introduce myself and the reason for joining. I live in Glasgow, Scotland and am a member of the CUP Foundation in the u.k.(cupfoundjo.org).
My wife was diagnosed last year with a secondary cancer in her neck and chest lymph glands where no primary was found.She has had breast cancer (1999) and lung cancer (2007). She needed no chemotherapy or radiotherapy etc for both of them, but did have a mastectomy and surgery to remove the tumour in her lung.She was very lucky (?)not to have needed any further treatment until now. She has just finished a course of chemotherapy and had a CT scan and now been told that the cancer has not spread and the lymph glands have shrunk a bit. She will now recover for 2 months and then see her oncologist to decide what happens next.So some good news but still a bit of a waiting game.Desperate for info about CUP I went on the web and found the uk Foundation above and just found today on their site ,The Stroud Foundation. I think it is very useful to have such groups to be able to share info to help each other with this dreadful disease. I have learned a lot ,but not near enough to understand CUP. More so not to understand why not enough research is being carried out worldwide to wipe CUP out. I dont believe we will ever wipe cancer out but at least knowing why CUP exists would be a step in the right direction in order that the appropriate treatment can be provided.Hopefully in the future CUP will become CKP (cancer of known primary)and therefore a proper primary to be treated accordingly. Raising awareness of CUP is obviously a very important step for us all to take and in Glasgow I am looking to find out how awareness is being achieved by cancer professionals. So again sites like this are very important to raise that awareness. I think I noticed a treatment section on the site and would like to post there about my wife"s treatment and the side effects and solutions that I had to find out about the hard way. I hope to be helpful to this site and share any info I can and of course to learn from all of you about your own experiences. Better stop going on now and speak to you all again soon .Take Care. JimbePosted 1 year ago # -
We recently learned that my mother has cancer. In mid-October 2010 she started having pain in her upper abdomen - she and her doctor assumed a gall bladder attack, however the scan showed lesions on her liver. They did a biopsy to learn that it was cancer but not the primary source and so the search began. What they found was multiple tumors on her liver a few small spots in her lung and lymph nodes as well as a mass in her uterus. They decided to do a full hysterectomy prior to treatment and during that procedure they could see numerous nodules in the abdomenal and pelvic cavity. She started her treatment a few weeks ago and seems to doing well (she is on a clinical study being led by Dr. Greco) - we have the first scan next month to see how it is progressing. I am so glad that I stumbled on this site as we are located right here in Cincinnati, it is nice to know that there is a forum to get information and support - as you all know - support is of the utmost importance at times like this.
Posted 1 year ago # -
Hi Missimom,
Sorry to hear about your mother"s situation but glad to hear she is doing well with her treatment. Yes, it is good to know that there are people in similar situations with whom you can share information and support. Please let us know how things progress. I have put in some info about my wife"s current situation in the treatment section on this site.
God bless JimbePosted 1 year ago # -
Hello everyone. I am just checking in to see how you are all doing. Please give us all an update. I think about you all daily. Take care.
Posted 9 months ago # -
Hello everyone.
I hope some of you are still checking in from time to time on our website. Please update us on how you are doing and what's been going on since you last posted.
I also have an opportunity for anyone that has been diagnosed with CUP, to link up with other CUP patients to offer support, etc. Email me directly at tara@stroudcup.org if this is something you'd be interested in doing.
Hope this finds all of you well.
Tara
Posted 4 months ago #