Hi Dr. who, you always make me laugh. I hope you get this, I don't know exactly what I'm doing???

[ronnie1943]

Hi Dr. Who,...You always make me laugh!!! 😊 Wish us .good luck. appointment with the surgeon ten thirty tomorrow morning!

Lynn the new fifty. Lol!!

[Dr_WHO]

You know the two of you have our wishes for tomorrow. Please, when you feel up to it, let us know the results.

[ronnie1943 in reply to Dr_WHO]

I'll definetly let you know.

Thank you so much for the support!!

[ronnie1943 in reply to Dr_WHO]

Hi, went to surgeon yesterday, didn't learn much?? Dr. Ned Carp at Lankenau. Sam is going to have the largest lymph node removed this coming Friday the 19th. Dr. Who, I was a little taken back, I was told by both Sam's oncologist and his radiation they'd was only one lymph node, to my surprise yesterday I was told by the surgeon there are three others besides this larger one that he will remove this coming Friday. I heard he's a great surgeon but a man of very little words. The one lymph node that Sam will have removed is on his right side pelvic area. He's to stay in the hospital most likely two nights. Dr. Who, we won't know any results until the following Tuesday. Sorry for the long post, as usual im so worried. Also, I hope you get this, I all mixed up on this , who I'm replying to etc,?? Really terrible on technology !!!

Oh, dr who when you get a chance will you try and explain ductal cancer and did you ever have any cancerous lymph nodes??

Hope you are feeling o.k.!!

[Dr_WHO in reply to ronnie1943]

Actually the report is not that bad. When they operate they almost always remove lymph nodes to check for cancer. In my case I want in knowing that one lymph node was cancerous. They took out an additional 13 nodes to see if the cancer had spread (it had not). The take away message is that you want them to find all of the cancer and remove it. If there are a couple of additional ones in question you want them to take them out! Hopefully once it is gone it is gone!

Ductal cancer is a rare form that effects about 0.4% of all prostate cancer cases. They determine if it is Ductal by the lattice structure of the cancer cells (the shape of the cell). It tends to be harder to find and treat.

Ductal does not always raise your PSA so you need to follow it with scans. My PSA when they found I had advanced cancer was just 4.7. In addition I had them stain a pathology slide from a cancerous lymph node and found that 30% of the cancer did not stain for PSA.

Note, do not confuse Ductal with intraductal cancer. While both are rare, they are different.

It tends to be more robust than regular prostate cancer so that treatments like chemo and radiation do not work as well. That is, it can survive better exposure to radiation or chemo. For this reason the recommended first line treatment is surgery.

Note, while Ductal cancer is rare, it is even more rare to have pure 100% Ductal cancer. Most cases are a mixture of Ductal and “regular “ cancer. For this reason chemo and radiation radiation treatments make since - to attack the regular cancer if nothing else. For this reason I had 38 rounds of radiation after my surgery.

Here is a review of Ductal cancer.

karger.com/Article/Pdf/252842

If he had not yet started, please have your husband do lower pelvic exercises. This is to help regain bladder control after the operation. Note he should NOT do these exercises after the operation until his surgeon says he can. Some men regain control after just a month, others take up to two years. The most it is less than two months. It took me about three months to get most of my control back. While I still have to wear pads for the occasional leaks, I take long walks with the dogs, scuba dive (new meaning to the term “wet suite”, go to movies etc.

Get him an inflatable dounut to sit on as it will feel like he is sitting on a baseball. That is normal. Also normal is that is testicals may really swell up. Again that is normal.

You may want to get grab wrap. I recommend Glad Press'n Seal Food Plastic Wrap. You can wrap the incision with it around his body a number of times to make a water tight seal. It makes taking a shower or even a sponge bath a lot easier.

He will probably get two catheter bags, one for night and one for the daytime. When I went outside I wore pants with zippers down the legs (backpacker pants). In this way I could hide the fact that I had a catheter. Get him his favorite DVDs or books to read as he may not want to move that much during the first two weeks.

Most important, take a deep breath. It is always hard when you here the words cancer, surgery. But please know that they have made great strides in getting cures and treatments for this disease. While hard to do, DO NOT let stress and worry tear you apart. Like I have said before, it is much harder on the caregivers than on the ones with zthe cancer. Now though you will need to be strong for him.

We are all here to give you strength! You are not alone! Remember, people like us we have to stick together!

God bless the two of you!

[Frankenski]

Walt's the bomb! How about that?

[dockam]

He is one of our Sages on this forum. Mahalo for all of your insightful ideas and caring thoughts

[Shooter1]

I'm at about the same place with mine. Just finished #7 chemo treatment. and PSA is again Dropping 25% every Three weeks. Last time it flat lined and Xtandi was added, Seems to be working..so we are on track for 10 treatment with an open end if still showing good drops in PSA and I can still stand the side effects (like the hot flash that just hit in the middle of my typing this reply) Had surgery but was not a good candidate for radiation acct of diverse nature of what was left. Pathology report showed all neural and venous channels out of the Prostate area where hot (Gleason (10). None of the scans had picked that up so it was a surprise. No real target for radiation without overwhelming peripheral damage, so right onto chemo.. Every one of us is different, but with this group we can usually find some one with similar experience. Good luck with your surgeon hope he/she can get out the bulk and set you back on the course for a long prosperous life. Please keep us updated and ask for any thing we may be able to help you with...

Doug

[Dr_WHO in reply to Shooter1]

Dear Doug, thanks for the update. Sorry that you were not a candidate for radiation, but trust me, radiation can have some not pleasant side effects (but I am still glad they zapped me 38 times). On the flip side, as of now they told me that I am not a candidate for chemo so I do not have those side effects to worry about. Apparently Ductal Prostate Cancer just laughs at chemo. Though laughter or not, sooner or later I will not be surprised if chemo is in my future. I am glad to hear that Xtandi is working for you and that you have made it past seven rounds!

What you said was so true. The cancer each one of us has is unique to us. We must all find what works best for us. That is what I love about this forum. We can share with each other what has worked, what didn’t and cover the drawbacks of each treatment.

Then we get to bug the doctors about what we learned here. They just love that!

[Shooter1 in reply to Dr_WHO]

My regular MO was back from vacation this week. As we met he handed me a copy of the study I had learned about here. He had printed a copy reviewed it and agreed with changes I had pushed for in his absence. Open mindedness is Very Important with our care givers/ He has now OK'ed 10 TREATMENTS INSTEAD OF THE 8 HE THOUGH WOULD BE GOOD TO PURSUE. As long as PSA keeps dropping 25% per treatment, I feel I would be a fool to stop now...Iv'e often been accused of being opinionated and out spoken, but seldom been accuse of being a fool.

Doug

[Frankenski in reply to Shooter1]

Remindes me of one of my "closet" favorites: The Main Ingredient "Everybody Plays The Fool". Sometimes.

[benninger in reply to Dr_WHO]

why doesn't chemo work on ductal prostate cancer?.We are going for Bill's third chemo treatment on Tuesday. His PSA is now down to a .08 but I do believe that is from the loupron , casodex and prednisone he started mid November and because his PSA was down to 1.01 when he received his first chemo on 12/5/17. How do we know if this is helping to fight the cancer in his bones and pelvic area. thank you

[Dr_WHO in reply to benninger]

First, please forgive me if I added to your stress. Let me say that there are no absolutes here. If the doctors recommend chemo to me I would take it. Please, please do not stop taking chemo based on a post in this forum! It seems like your husband’s treatment plan is working. Please continue with it!

Also, please know that there is a difference between intraductal and ductal cancer. Even doctors get the two of them confused. “Regular “ and intraductal cancer responds a lot better to chemo and radiation than Ductal does.

The other point is that in most cases, Ductal Cancer is actually a mixture of “regular “ cancer and Ductal. It is very, very rare to have 100% pure Ductal cancer. So even if the Ductal part does not respond that well to chemo or radiation the “regular “ part will. Is is for this reason I had 38 rounds of radiation.

The reason for my statement about chemo is that Ductal cancer tends to be harder to kill and can recover faster than “normal” cancer cells. (If you have regular or intraductal cancer then no worries). For Ductal it may require higher and stronger hits of chemo. The same goes for radiation. Both radiation and chemo work based on the fact that cancer cells are easier to kill and do not recover as fast as normal cells. That is why you get multiple doses of chemo or rounds of radiation. Each does or round weakens the cancer and healthy cells. Regular cells can recover faster. When the next dose or round hits the weaken cancer cell it is more likely to die.

Please, please do not let my earlier post cause you concern. Please remember everyone’s cancer is unique. What may work for your husband may not work for me. If the doctor recommends chemo I would go with it. After all, I had 38 rounds of radiation even with what I said above. Based on how well your husband is responding I would continue with both ADT and Chemo. After all, ADT does not kill the cancer, Chemo does.

Please know my prayers are with the two of you.

[benninger in reply to Dr_WHO]

Thank You..His cancer is just listed as ductal. Our prayers are with you too.

[JP63]

Hi Doug

I would be interested in reading the report you referred to. I am on 3 monthly Lupron injections and I completed six rounds of Chemo (Docetaxel) in March '17 and was told that 6 was the optimum. Was this your first round of chemo or a re-challenge as I see you mention Xtandi which I understand is offered after primary ADT starts to fail?

My PSA was declining but has increased from 0.86 in Oct 17 to 1.2 in Jan 18 and my oncologists wants to do follow up bloods in 6 weeks and 12 weeks and then assess if further treatments are required. She has mentioned bicultamide (I think it's casodex) but am wondering if there are other options. Diagnosed Sept 16, PSA 7.4 Gleason 8 and 9. Mets in bones and pelvic lymph node.

John

[ronnie1943 in reply to JP63]

Hi John, my name is Lynn, my husband had one year of Docetaxel, one day every three weeks. He is now seventy four and has been on this journey since age sixty five. Started with a tumor in his left arm , PSA was four hundred and forty five at that time. the tumor had wrapped around the bone, they were able to save his arm. Thirty radiation treatments and Was put on hormone injections and casodex that worked great for him until this past year. Tumor grew up from the prostrate,blocked his kidney tubes. Two operations. This is when he had almost a year of chemo. And again radiation to shrink the tumor that blocked his kidney tubes. Going to see surgeon this morning

They now found one cancerous lymph node??? They say it's small bit we will see where we go for now??

Good luck to you, hang in there and you prayers coming your way. It's a long journey and some bumps in the road but there are so many treatments they can do today.

Sincerely, Lynn

[Shooter1 in reply to JP63]

JP63, When I started this 6 rounds of chemo was and still is "standard" here in USA. Read here that the UK standard was 10 if still effective and tolerated. Talked to my MO, he wanted to go 8. I pushed for the 10 and that is now our target. Leveled out and slight rise in PSA after 5 so asked for and got Xtandi added. Right back to 25% drop with tests before dose 7. This is my first time through with treatments after jump in PSA after RRP operation (61 from 52). Still on Lupron for hormone sensitive portion of PC. PSA now at 0.146 aiming to get it below 0.04, but with me reaching that goal seems slow in coming. Best of luck with yours... Push for all you can get in this first round and get it down as low as possible for best long term results.

Doug

[Dr_WHO]

Thank you. Perhaps we will become the world experts in Ductal Cancer.

[benninger in reply to Dr_WHO]

Please know that I follow everything you guys write on ductal. Doctors seem to think that there is no difference. please keep up the good work.

[Dr_WHO in reply to benninger]

Ok to follow. I hope to God you do not have it. If you do I have to show you the super secret hand shake!

[benninger in reply to Dr_WHO]

Pathology reads Prostatic Adenocarcinoma, Ductal type, Gleason score 5+5=10. Surgeon said less than 1% of prostate cancers are ductal. Keep up the good work.

[Dr_WHO in reply to benninger]

Well I guess we will have to show you the secret handshake. Know this, while Ductal tends to be aggressive, it can be treated. Please ask if they can stain a slide to see how much of the cancer produces PSA.

Information is your friend. Here are three articles.

.ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

That makes three of us here with Ductal and some additional ones with intraductal. Remember, people like us we have to stick together!

[Hidden]

Hope it went well today and from here on. Wishing you strength and healing.

[ronnie1943 in reply to Hidden]

Thank you, Don't know much after seeing surgeon, just going going to be operated on this coming Friday the 19th , see after the biopsy comes back. I'm a wreck.

Thank again!! Lynn