They can't figure out where the cancer started.

obs · Regular Joined: 10 Aug 2007 Posts: 28

So in the end my dad is going to get treated at Mayo Clinic. He is lucky, my dad's long time friend has a relative that is a MD in the Rochester hospital and kind of got us in really quickly. My dad is going to get everything checked out starting monday the 24th. I will drop my current classes and take the year off to take care of my dad, since we live in Chicago, I have to help my dad get around back and fourth from Minnesota.

Muttsmom

Have you found out what they are treating him for?
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

obs · Regular Joined: 10 Aug 2007 Posts: 28

We've been here at mayo for the past week, and my dad has got reexamined to find the primary site. He had his whole upper body scanned again with CT and there was no sign of tumor anywhere except for 2 little half pea sized tissue in the abdominal wall. They did a biopsy on that and found cancer cells, but we are still waiting on the pathology report. Through blood work the doctors say the tumor markers are sky high for the pancreas or the colon, but these were clean on the CT scan.
However after an MRI of his entire spine the radiation oncologist said he needed immediate treatment, so my dad is going to get 5 radiation treatments in 7 days, one beam to 3 vertebrae in the T spine and one beam to 5 vertebrae in the L spine, few of my dads vertebrae were either crushed through compression fracture, or enlarged through tumor growth and are touching the spinal cord.
We are meeting my dads primary oncologist Dr. Richards to get a diagnosis, prognosis, and chemotherapy treatment, which the radiation oncologist says he should do right after the radiation treatments.
He is also currently on Zometa.

Muttsmom

Hi,

I'm glad they are finally going to radiate the bone mets. That should help the pain a great deal.

I'm guessing the tumor marker test they did was a CEA. It covers colon, pancreatic, breast, liver cancer etc. but like all tumor markers, they aren't always reliable.

They have learned so much through research, but we still have a long ways to go.

Please keep us posted on how your dad is doing and don't forget to take care of YOU too!!!!
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

brainman

Finally you are at least a clue about where the primary cancer is and they are radiating his spine. Like Nancy said, that should help with the pain.

It is not unusual for tumor markers to be high but on cancer to be found. It is called "occult primary." However, he will most certainly be getting chemotherapy that will kill cancer cells where ever they are and where ever they come from. It is just good to hear that something is finally being done to help him.

You and your father continue to be in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

obs · Regular Joined: 10 Aug 2007 Posts: 28

they did a blood test for CA19-9? and they said it was sky high. Also my dad has completed 3 radiation treatments and his pain is still the same. The radiation oncologist says that if it was specifically bone pain the pain would be gone, but in my dads case the tumor growth is causing nerve compression, which he says might take up to 2 weeks after all 5 treatments to reduce pain. What if the pain doesn't go away, then what? Also the pathology report came in and my dad has a cancer of unknown primary, they said they cannot figure out what kind of cancer cell it is and that it is highly suspicious for thyroid or lung cancer, but they cannot say that it is. Also my dads primary oncologist says that a PET scan is not necessary, can I ask you guys why?

obs · Regular Joined: 10 Aug 2007 Posts: 28

forgot to mention that it is a carcinoma

Muttsmom

Hi,

I'm not sure what kind of Tumor Markers you're referring to. I can tell you that my best friend had normal tumor markers and she had a 9 cm tumor and 11 lymph nodes positive for cancer too. Tumor markers can help, but I don't know of any that are real accurate. It's another tool they can use to try to keep an eye on things.

I'm sure it happens more then just every now and then, but this is the 1st time I've heard that a primary tumor couldn't be located, or what kind of primary cancer it is. I'm no help in explaining this.

As far as a PET Scan, I'm not sure why they don't think it's necessary. There's no doubt that anywhere there is inflammation, it will show a "hot spot" and it does show tumors when they are smaller then other tests, so?????

Please keep us posted and soon his bone pain should reall ease up. I hope they are giving him pain meds. This day and age, there's no reason why anyone should have to suffer in pain.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

obs · Regular Joined: 10 Aug 2007 Posts: 28

he is currently taking fentanyl 25mcg and using 2 patches at a time, onxycontin 10mg taken twice daily 12 hours apart, and hydrocodone 10/325 taken once every 4 hours. I dont know but this seems like a lot of drugs to me or is this normally what patients do? also last couple days, ive been catching my dad talking randomly to people who are not there. is this a side effect of these drugs?

Muttsmom

That is a lot of pain meds and I'm sure they could make him say things that don't make sense. I'd call and mention that to his doctor and they might want to lower the dose.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

obs · Regular Joined: 10 Aug 2007 Posts: 28

i asked one of the doctors about the pain meds and she said it was ok, and that confusion and delusion can occur with these drugs in combination, she said my dads pain is too harsh to use any less. i also asked about not finding the primary location, she said at this point it did not matter where the cancer had started, and that there is no benefit of finding out the primary, they said they can find it through rigorous testing, but my dads body would not be able to take all that testing. she said the main thing is too start chemo right away and see how he responds to it, my dad finished radiation today. we are seeing the oncologist tomorrow to see how the chemo will go. i wanna ask, in my dads situation where the cancer has spread diffusely to his spine, pelvis, and rib cage, how much will chemo actually help, and how long do people like this usually live?

Muttsmom

This is just a suggestion, but I would ask, how do they know what kind of chemo to use if they don't know what kind of cancer he has. I'm using the example of breast cancer since that's what I know most about. For someone who's cancer has spread to their bones or liver, they aren't given chemo for primary bone or liver cancer, they are given chemo that kills breast cancer cells, because that is what kind of cancer they are treating. If it was another kind of primary to had spread, they would use chemo that worked on that kind of primary since that is what is in the bones or organs.

Again, not knowing what kind of cancer your dad has, I would think the prognosis would be nearly impossible to predict. I know many ladies with breast cancer mets to the bones, who are still stable MANY years after dx and leading happy lives. Again, in their cases, they know what the primary cancer is.

Keep us posted.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

brainman

Hi Obs, it is impossible to predict how long he might survive because of all the variables from one individual to the next but I would see it is weeks or months rather then years.

At this point it does not really matter where the primary is located. His chemo will hopefully kill cancer where ever it is in his body. The radiation will continue to work for 4-8 weeks so with time his pain might ease and he will not have to be on so much medication. Continue to work with his medical team to try to find a solution to his pain.

As to his delusions, that is where you and the rest of his family can help. You can be his anchor to reality, so to speak. You may possibly be the only thing the is real is his life at times. Talk to him in a calm and southing tone. Ask him about his past rather than the present or future... except for immediate concerns like is he hurting or hungry. And even then, you may at times have to tell him that he NEEDS to take his medicines or eat or go to the bathroom... etceteras. Like I have said, you are his anchor to reality.

I am still thinking about and praying for you and your father.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

obs · Regular Joined: 10 Aug 2007 Posts: 28

what muttsmom says makes perfect sense, how will they know which chemo drug to use if they dont know exactly what kind of cell type it is. but then again brainman is knowledgable also, brainman can you explain why you also say it doesnt matter, and sort of explain the point muttsmom is making?

Muttsmom

Hi Obs,

I'm curious as well as to Jim's (Brainman) thinking. I knew a lady most of my life, like my 2nd mother who had lung cancer that had spread to her bones, adrenal gland and liver. The chemo they used to try to stop the spread and shrink the tumors in her liver was based on it being lung cancer they were dealing with. It might be that with bone mets, they do radiation and give a bone strengthening regardless of what kind of cancer the primary is, but it still goes back (my thought) to what kind of primary, to know what kind of chemo would slow down the spread and/or shrink the mets. They use different chemo for different kinds of cancer. Jim (Brainman) got competely different chemo then I did because we had 2 competely different primary cancers.

As you said, Jim is very knowledgable and I'm sure he will be able to educate us both.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

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