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Info gathering, decision making, etc. HAS to be done this weekend

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Posted 5/30/2014 11:33 PM (GMT 0)
Paul is now on here- he posted in my original thread about Fiance has cancer... 

The Thorax CT results were not good. They downright sucked- Posted below... The lymph node biopsy is scheduled Tuesday afternoon as well. Will meet with Urologist soon when results are back. Asked the MD to order as Stat if possible given the chest CT results. Also asked for oncology consult.

This weekend is research and decision time- so much to do, learn and figure out, put in place, etc.... My head is reeling. I think I am just going to try to rest tonight but I know there won't be enough hours to get all I need to have done completed. I just need a little time to slow down and relax before it hits the fan again.


We would love to talk to others who can help us with information. I have reached out to a couple with emails and hope that this weekend would be good time to connect if at all possible.

Trying to get the drug/s of choice info from MD to look at that. Point is he needs to be on something- fast. That is a given. What can he take that won't eliminate another therapy in the future is one question.

Questions about diet, insurance, benefits, legal, etc... MrsWorry- I hope we can talk this weekend, sorry I haven't had time to answer your emails I am sure you understand. I have composed about 10 to you in my head though! Thank you for the one you sent- I will answer later after I have some of the amazing dinner Paul cooked.

-kukukajoo

CT OF THE CHEST WITH IV CONTRAST.
DATE: 5/29/2014 2:24 PM

CLINICAL INDICATION: Pulmonary nodules. History of prostate cancer.

COMPARISON: CT of the abdomen and pelvis dated 5/27/2014.

TECHNIQUE:

TECHNIQUE: 80 cc of Omnipaque 300 were administered intravenously,
after obtaining written, informed consent. Contiguous axial images
of the chest were obtained according to standard departmental
protocol and submitted for interpretation.  Reformatted coronal and
sagittal images were also submitted for review.

FINDINGS:

Lung And Large Airways: Innumerable pulmonary nodules are scattered
throughout both lungs, with an upper lobe predominance. These
nodules measure up to approximately 6 mm in maximum diameter and
some demonstrate a peripheral halo of groundglass opacity. They do
not spare the pleural and fissural surfaces and follow a random
pattern of distribution. There is also some mild smooth
intralobular septal thickening.

Pleura: No pleural effusion or pneumothorax.

Vessels: Normal caliber thoracic aorta and pulmonary artery.

Heart: Normal size. No pericardial effusion.

Mediastinum And Hila: No adenopathy.

Chest Wall And Lower Neck: Unremarkable.

UPPER ABDOMEN: Unremarkable.

MUSCULOSKELETAL: No aggressive appearing osseous lesions are noted.
Mild degenerative changes are present within the thoracolumbar
spine.  

IMPRESSION:    
Innumerable small pulmonary nodules scattered throughout both lungs
and mild smooth intralobular septal thickening. Findings are
nonspecific. Given the patient's history of prostate gland cancer,
metastatic disease/lymphangitic carcinomatosis is high on the
differential. Sarcoidosis could also be included as potential
possibility.

 

 

 

Posted 5/31/2014 3:28 AM (GMT 0)
So sorry to hear about the latest scans.

I had replied to your email before reading this. Even though I will be out of town as I stated, feel free to call!

I'll be with folks who totally understand. Actually, all of them are friends we met here on HW...so do not hesitate to call!
Posted 5/31/2014 3:36 AM (GMT 0)
Soft tissue mets with no osseous mets? Did the bone scan confirm this? If so, this is not your everyday prostate cancer. You might want to get the lung nodules confirmed as PC by biopsy. Did you get the biopsy slides re-read by Dr. Epstein? This is sounding like a neuroendocrine prostate cancer, possibly small cell, or some other rare kind. If so, ADT might barely touch it, and aggressive chemo may be necessary. Paul should be under the care of an oncologist who has experience with this kind of thing. Clinical trials may be his best bet.

To attach a signature to your profile with the details so far (this would be helpful to us), just click on "My Profile" above left. Then click on "edit profile" and type the details where is says "Signature." When you're done (limit 400 characters), click on "Submit." Thereafter, your signature will appear whenever you check the "include signature" box when you enter a post.

- Allen
Posted 5/31/2014 4:19 AM (GMT 0)
I'm sorry about Paul's recent scan. I can't give any advice, just supportive cheers.
Posted 5/31/2014 11:23 AM (GMT 0)
KuKu, with all due respect to the outstanding expertise on this site and your obvious excellent research ability, I would strongly suggest seeking out an experienced prostate oncologist. Paul's cancer needs expert attention IMHO.

Jim
Posted 5/31/2014 2:14 PM (GMT 0)
Kuku,

Here is a blog address for a man named Scott in Austin, Texas. The docs found the pulmonary nodules by accident while doing another CT...he has PCa that has metastasized to his lungs.

http://scottspctraintrip.blogspot.com/

He might be able to give you advice that is specific to this.
Posted 5/31/2014 2:23 PM (GMT 0)
Hey thanks. Would like to find more about neuroendocrine? Never heard of it... I don't think our insurance will let us go outside to other providers. One thing we are looking into this weekend. So much to do but right now just relaxing as we need that too....

MsWorry- will call soon....

Tall Allen- bone scans were posted in the intro thread about fiancé just diagnosed. Showed nothing. So strange we know. Don't understand.... MD did say probably micro mets but with this much in the lungs?? Something is missing and I don't think we have the whole picture yet. And to think on May 17 he had a chest xray that was totally clear!
Posted 5/31/2014 2:24 PM (GMT 0)
PS insurance denied the request to send biopsies to Hopkins. Maybe we should shell out the cash and do this anyhow?
Posted 5/31/2014 5:06 PM (GMT 0)
Kuku,
I have to concur with others, this is not your typical PC and is out of the expertise range of most doctors. I would immediately try to see someone like Dr Myers in Earlysville Va or Dr Scholz in Marina Del Rey Ca. who have experience in detecting and treating variants. If I had a suspected variant I would also send biopsy slides to Dr Bronkoff in Germany www.proatapath.de
Unfortunately your insurance issues will make it difficult to consult with the best experts. Unfortunately insurance companies are moving to standardized treatments which may not be the best course of action in your current situation.
Posted 5/31/2014 7:02 PM (GMT 0)
kukukajoo,

Insurance seldom pays for a second opinion on a biopsy. I think the cost is under $200. If it is a rare variant, they should be able to see it. In fact, it's not a bad idea to ask them to look for it.

Here are a couple of links. You can call to find out the cost.
/www.bostwicklaboratories.com/services/laboratory-services/second-opinions.aspx
pathology.jhu.edu/department/services/secondopinion.cfm

I hope you are able to find an oncologist experienced with this sort of thing. As John T pointed out, there are not many.

- Allen
Posted 5/31/2014 7:08 PM (GMT 0)
Check with Bostwick (as mentioned in TA's thread). They did my biopsy reading. I understand that they had programs targeted at second opinions in the past. Give them a call. Great folks to work with.
Posted 5/31/2014 8:59 PM (GMT 0)
Thanks, def sending to Johns Hopkins and are now looking at the Bostwick info. My daughters said they are setting a gofundme or similar which is great as I was going to check into it. We don't have the money to keep shelling out like we have been this week for all the copays, nevermind this too. Yet we realize how important this is to his life.

If we go out of network now we will have to pay out of pocket. Our network is tiny so chances are we will have to. I don't know what the urologist is thinking now... But I hope he fights for us.

The way its acting has us scared. We don't know what to do. Planned on researching all day but took a break for a minute, had to deal with family drama from my grown children who are fighting over who was told about this first (and accusing me of lying of who knew first!) which to me is so trivial given the circumstances but they are still pretty young and well, girls.... Then that a friend posted something on facebook about it before the kids knew the recent info (and they still don't, other than my youngest and most rational) and all kinds of drama being created I think out of sheer shock and fear and I don't know what else. I feel I am being pulled and tugged from all directions at the moment.

So all we really got accomplished was a wonderfully welcome phone call with MsWorry who is a blessing to us, changed our statuses on facebook to "engaged", got the printer ink we needed (and I found wedding invitation kit for $1.00 that is usually nearly $40!- a sign for sure!), and read a little more on the internet. Got something to make for dinner tonight and beer and peanuts for Paul in celebration of completing his antibiotics. Not much of anything really. But here we are drained physically and emotionally.
Posted 6/1/2014 11:25 PM (GMT 0)
Kukukajoo,

Enjoyed the chat. Feel free to use that number whenever you want to. :)

I'm a night owl, so even if it is late, that is okay was well.
Posted 6/2/2014 2:56 AM (GMT 0)
Thank you so much MsWorry! You helped ease my mind and I know Paul was so much more relieved talking to another member today JNF who I have to thank a HUGE amount. JNF....as Paul said you were the first person he spoke to that actually got him off the ceiling! I can't tell you what that means to me, as well as to him.

The information and the sense of belonging and understanding we have received has been outstanding. Its saved us valuable time, helped decrease our stress and pointed and focused our efforts of research in the right directions. I can't be more thankful and appreciative!

I hope to meet many of you soon in the future when things calm down and we will continue to post updates and hope to be giving great support like we have received to others when we are able to.

Hope everyone has a great week ahead.
Posted 6/2/2014 12:05 PM (GMT 0)
Thanks for the time we spent and your kind comment. I look forward to meeting you in person soon. You can see that you and Paul have a lot of friends in your corner to provide information and support.

Jack
Posted 6/2/2014 11:17 PM (GMT 0)
Jack, I can't tell you how much that means.
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