Need some Advice. Not good news with Husbands G-9 diagnosis.

We met with my husbands Oncologist Tues. to go over results of Cat Scans from last week. We were very disappointed in the results. Having some difficulty in understanding results. I think we are still in shock as this has been a very emotional couple of weeks. He was diagnosed 7/2013 with Gleason9 T4N3M0 12 of 12 positive with 10 @5+4 and 2 @ 4+5. Bone Scan in 8/13 neg. Started on Degarilex in Aug. PSA went down(as seen in signature). Then started to rise after a month. In Dec./13 started Casodex. Dr. stopped Casodex in January as PSA still rising and some discomfort. Started Zytiga mid January/2014. Feb. 13 appt. PSA on down 2pt.(34 to 32), Dr. ordered CT's Head/neck Chest/ Abdomen and Pelvis. Husband has been in increased pain. back and pelvis. Hard time sitting very long. Urinating almost every 1/2 hr. Taking Ibuprofrin for pain. Met Tuesday to go over scans. (Very Disheartening as Dr. was in the office with us for a whole 10 min.)-recorded conversation for our records so we could listen to again. Basically, said he needs to begin Chemo ASAP, to releive the "symtoms. The sooner the better. He feels that some of his "cancers" are NOT PSA producing type. due to the spread.
The following is the IMPRESSION: of the CT results.
CT- Abdomen and Pelvis: Extensive retroperitoneal lymphadenopathy starting in upper abdomen extending through both iliac chains. Locally invasive prostate cancer involving the adjacent bladder, seminal vesicles with extensive preirectal lymphadenopathy. Questional sclerotic foci in the left iliac bone at the level of the sacroiliac joint.
CT Chest: Metastatic lymphadenopathy in the mediastinum. Question of bony Metastasis in the right hemothorax. Mets on 4th and 8th rib. Lymphadenopathy is seen sectrally in the medaiastinum particularly in the posterier compartment extending down to the retrocural region where the largest bulky lymphnode on the right measures 3cm and on the left a paraaortic lymphnode measures 3.4 cm.
CT soft tissue of NECK: Bulky lympadenopathy is noted in the left mid-lower neck. There are several masses, but the dominent lesion has a maximal horizontal dimension of 4cm. Dispite being UNUSUAL for prostate carcinoma, the note is presumed metastatic. Biopsy may be necessary.
Left mid-lower cervical lympadenopathy.

I know this is long, but SO MUCH to absorb. We are seeing a Dr. at one of the TOP Cancer clinics in the US , located in Houston, Tx. With this much information I wish he would have spent more time with us. I did ask "what is prognosis" if he does not do the chemo. The Dr. said" he would predict that in 3-6 month, "Things would be real bad". (Kick in the gut), We are only in this for 8 months. I have mentioned to my husband about Dr. Charles Myers and Lam ?, Do you think we need to go for a "Second Opinion"? Right now feeling so overwhelmed he is very depressed. Uncomfortable in pain, not sleeping due to frequent urination and pain.

Any suggestion would be so helpful. Dont know who else to turn to. Looked at his Patient On line appt. schedule and they only show. appt with Nurse for Degeralex shot on March 13th. I think he needs something to help him NOW.

Thank you for taking the time and advice.

Barb

Hi Barb,
I am so sorry. My non-medical opinion: he needs to start chemo ASAP. I think any other doctor you see will make the same recommendation. Why not? I have been through chemo. It is doable and it will probably help your husband feel better.
Southern Comfort

Barb,

I'm sorry to hear this turn of events.   If it were me (and oneday it very well may be) I would immediately start the chemo and initiate seeking another opinion.   Personally, I would be inclined to see Oliver Sartor at Tulane.   For you he is a lot closer than either Scholz/Lam or Myers.   Plus, I have been hearing that it is near impossible to get in to see Myers thses days due to his current patient load.   Sartor is reputed to be in the same and is whom I have decided I will see if my cancer errupts.

I would not wait to see another doctor, because this sounds urgent to me.   An aggressive cancer can spread like wildfire while waiting the several weeks it usually takes to see a specialist.

Best wishes,

Jack 

I agree with Mel.....I would set up apt with Schloz/Lam asap.......they should be easier to get an apt with than Myers

Hi Barb
Sorry to hear your news.
As you will find, it seems that there is always something that can be done. If chemo is an option for you, i do have experience in that area (as a patient only). The infusions are easy. Then come the side effects. Recovering from the side effects is a little harder each cycle but it is doable. Keeping ahead of major side effects like nausea is important. Forcing enough water & fluids is also very important so you don't get dehydrated.
Doing chemo early in my treatment plan was effective for me. I was Dx in January 2013 with serious stats as well. It can get better. My scans look like a different person, only 14 months later.
If it's an option for you, dr's at Mayo Clinic are aggressive with treating advanced disease. Dr Kwon is a Urologist there, might be worth looking up as well as looking for a medical oncologist.
As above, sending positive vibes your way. Stay positive and try to enjoy each day while working to ensure a better future.
Keep the faith,
Gunner

I have no experience with chemo, but am in violent agreement with JNF.

Don't wait on the chemo but if your renowned doctor only spent 10 minutes with you, sounds like you are actually seeking out a first opinion as much as a second opinion.

So you can probably try Lam as your new first and with his office delays, Myers for the new second opinion. Also in that order for insurance reasons. I assume Lam takes insurance but know Myers does not, a secondary issue under the curcumstances.

For my part I will speak to the greatest Healer about the two of you.

LupronJim

I know everybody is saying do Chemo NOW.

They may be right, but is there any way you can get to chat with Dr. Lam or Dr. Scholz NOW!!

They keep moving up all kinds of drugs BEFORE Chemo (they start out in clinical trials after chemo, then get approved, and then they start invesitgating before chemo -- I think Xtandi is one such example).

Chemo is a big step. At least try and get a phone chat with one of the biggies.

Mel

Barb,

I know MDA is on overload with two major oncologist having recently left. One that left was my husband's oncologist and after a 15 minute visit like you guys had, with the nerw guy... we followed my husband's oncologist to his new place.

Just some food for thought... Ask them if they can test him to determine if it is small cell carcinoma or a combination of small cell and adenocarninoma. The chemo for each is different. Small cell is much more aggressive and it is my understanding that Cisplatin and Etoposide (VP-16) is used for chemo, where Taxotere or Taxotere and Carboplatin are used for adenocarcinoma.

We were told that for adenocarcinoma, chemo might catch some cancerous cells here and there because it is not a rapidly dividing cancer cell. However, chemo appears to have more benefit (and therefore the first choice) to small cell because it is a rapidly dividing cell.

I may have some of this jumbled up, as I am just learning about this small cell stuff myself. But, the question is worth asking.

I know you said you sent me an email a while back, but I never got it.

MsWW, I'm thinking it may be a combination. The Oncologist said that one cancer produces PSA but other does not. The matastisis to the lymph system up through his chest and neck area is rare for Pca. He called us this afternoon to ask us to be at MDA Monday morning. He will discuss side effects . They will begin a combo Chemo, Doxetaxel-Carboplatin, on Monday. This all sounds so weird to us. Just had not thought this would be happening, and so quickly. I will let you know more after Mondays appt.