Another Tumor

[tom67inMA]

Met with the oncologist today to go over the CT scan from my trip to the ER a couple days ago. It turns out the radiologist at the hospital wasn't as inept as I'd hoped, and I really do have a growth on the outside my bladder. Most likely this is a return of my bladder cancer, but a biopsy will confirm. I'm also being tested for Chromogranin A to check for neuroendocrine prostate cancer.

If this is bladder cancer, it should be curable with chemotherapy followed by surgery. Surgery would remove both the bladder and the prostate. The chemo would also theoretically attack the prostate cancer and beat it back a little further. So as much as I'm upset at the thought of losing my bladder, there is the bright side that it may get more prostate cancer out of my body which is a good thing in the long run.

My body refuses to follow any rules. My PSA screening tests didn't detect any cancer until I was metastatic. Now my bladder cancer grows on the outside where it can't be seen in a routine cystoscopy. At this rate, someday I'll find out that I actually died back in 1993 and some cancer has been animating my corpse ever since

[Steveo3312]

Sorry for the bad news Tom.

🙏

[Danielgreer]

Hi tom67, I’m really in envy of your positive outlook. Hoping for the best for you. I also had normal PSAs until I found out I had mPC. I’m wondering how common that is ? I did everything I was supposed to do with preventive care and I still got nailed! 😀

[tom67inMA in reply to Danielgreer]

I do try to be positive. Sometimes it works, other times the post gets deleted. Which is it say I'd be envious of me too if all I knew about me was my posts

Screening is important but far from perfect. I thought the quarterly checks would give me a warning, but here I am again where symptoms were the first warning. Welcome to the club!

[Danielgreer in reply to tom67inMA]

Three years ago I had lower back pain while my PSA was normal and went to my PCP who did a digital exam of my prostate and X-ray of my lower spine and he didn’t alert me to cancer. I think I may have had it at that point. No way to know for sure though but I do have suspicions. Anyway doesn’t help to dwell on it must push ahead!

[tom67inMA in reply to Danielgreer]

Yep, though sharing your story can help if it helps others avoid the same fate. It's difficult though, my wife has more back pain than me and obviously she doesn't have prostate cancer.

[Muffin2019 in reply to Danielgreer]

10 years ago my psa jumped from 2.5 to 5.4 then 3 years jumped to 7.9 then to 156 with symptoms 2 years ago. I should have been proactive but was told by my mom that there was no cancer in the family history. She passed in 2013 and did not know that my brother had bladder cancer 6 years ago which came back last year along with colon cancer. His diet stinks and did not give up alchol, I think he is an alcholic so there is nothing they can do, he had had 3 minor strokes with vision loss in one eye. Lesson learned so I am very proactive with this , have had chemo in 2018, scans good and not ready to give in, still working part time.

[Danielgreer in reply to Muffin2019]

So the chemo knocked your PSA down (hopefully)? I stopped drinking 20 years ago when I had a liver issue and so glad I quit since it would be a challenge to deal with PC and drinking. Hope you brother can navigate through.

[Muffin2019 in reply to Danielgreer]

It knocked it down to .6 but now 3.6 no progression and no new Mets from recent scans.

[timotur]

Tom, as a fellow runner, I wish you a good treatment. Keep running and hope for the best. Rgds, Tim

[LearnAll]

Tom...You are a courageous man with such a wonderful sense of humor. In face of difficulties, you are able to see the silver lining...I truly wish you great success in getting your health back. Best of luck !

[j5000]

Tom, your attitude will carry you through. Please keep us posted.

[Tall_Allen]

Take it one step at a time. They have to determine just what the growth is. Some bladder cancers are treated with innoculation of BCG. I assume they will be doing a biopsy. Chromogranin A alone is not a test for neuroendocrine cancer.

[tom67inMA in reply to Tall_Allen]

Yes, biopsy is planned. Since it's on the outside can't use BCG. I expect chemo regardless of what the biopsy shows, but the drugs used will probably change depending on what they find. I also asked about genetically testing the tumor.

[Tall_Allen in reply to tom67inMA]

The most important analyses are histological and IHC. Since you don't know if the site of origin is urothelial, prostate or lung, they have to stain for them all. Ask for stains for TTF1, CK7, CK20, P63, HMW keratin, EGFR, synaptophysin, chromogranin, PSMA, DLL-3, NKX3.1,

[tom67inMA in reply to Tall_Allen]

Why would the origin be the lung? Also, are these stains for genetic defects? Or types of cancer?

[Tall_Allen in reply to tom67inMA]

Sorry - I take that back. I thought you had mentioned a lung lesion, but that was a different patient. No, this is for IHC analysis- much more important than genomic analysis. It stains for proteins expressed by different tumor types. It can distinguish bladder cancer from prostate cancer. Scratch TTF1, HMW keratin, and EGFR. Keep the rest.

[Tall_Allen in reply to Tall_Allen]

FWIW - Several top MOs have recommended to me that Dr. Wong at Duke is the top guy to do morphology and IHC.

pathology.duke.edu/research...

You may want to request a second opinion on the biopsy from him.

Apparently, he's the go-to pathologist for this sort of thing (similar to Dr Epstein's reputation for prostate biopsies).

[JamesAtlanta]

Wow, quite a sorry! You do have the most positive attitude I’ve ever seen! Keep it up - an inspiration to us all!

Please keep us posted - we will be praying for you!

James

[Hidden]

😂😂😂

[Haniff]

Stay strong and cheer up Tom. Trust me, your positivism will help you overcome this hurdle too.

My very best to you.

Haniff

[snoraste]

Sorry about the news. But keep your positive attitude (I know it's hard at times). Another bump on the road. But you can manage.

[Jimhoy]

Damm it!

[Currumpaw]

Hey tom67inMA--

I am so sorry to read this. Dr. Gary Larson who is at the Integris Cancer Institute in Oklahoma City is a proponent of proton therapy which is done at the Institute. He had bladder cancer. He wrote that he chose to have his bladder cancer treated with proton therapy at Mass General rather than the Institute because at that time there was a doctor there that was perhaps the best at treating bladder cancer with proton therapy.

I don't know if this info about Mass General would possibly be helpful but know that you will be in my thoughts.

Perhaps Dr. Gary Larson would have a conversation with you--if you wished to--that would be your call of course. Just a suggestion. Explore options if you wish. Do what you feel is right for you.

What a positive attitude you have! A Smiley Face to close your post!

Currumpaw

[tom67inMA in reply to Currumpaw]

At this point my MO would say radiation therapy would be plan B, but if we choose not to go the surgical route that may be a very useful reference, thanks!

[RonnyBaby]

When all else fails, a good sense of humour can't hurt.

You've been racked over the coals somewhat but I'll bet something good will come out of this.

Your body is trying to tell you something - now if the right people are listening ....

Hang in there - there's lots of fight left in you !

[bellyhappy58]

What a great positive attitude approach to your situation. Will pray for your recovery.

[Jbooml]

God your heroic Tom.....I to sometime look at my body as a marriage of convenience for my Rotty old cancer.

[tom67inMA in reply to Jbooml]

Thanks for the kind words but I wish the "heroic" came with better results in remaining cancer free.

[Jbooml in reply to tom67inMA]

I hope...as I'm sure many here...that yours is the case that busts cancers grip on us all.

Peace love and health brother.