Newly Diagnosed Hubby Age 46 Surgery Nov. 17th

15 years 2 weeks ago #2045 by Mike

I'm stoned!!! What a cheek - you've got the bong and now that you've got it you've booked your husband in for IVF placement and you are tripping around coral reefs!

Hey ho only 3 days to go and Cancer will be history on the coral reefs of the Bladder C!

I'd stick with the bong if I were you, the Carol King imagery is far better than The Carpenters ;)

Sounds like your husband is in good hands - when are they putting in the filters? are they placing the IVCF from the groin? In the abdomen area below the Kidney junction or above or right up by the heart? If it filters out clots, what does it do with them? surely it has to dump the filtered clots or the filter itself will clog?

Sorry medically I'd need your bong to work this one out and then I wouldn't understand!

Be happy.
Greg L-W.

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15 years 3 weeks ago #2042 by Mike
Thanks so much Deb, Rosie, Wendy and Greg

Deb I am so glad to hear your hubby is doing good :) thanks also for the pre and post surgery itinerary.....very helpful

Oh my Greg.....the Bong line made me smirk more than once today and I missed a "C" when referring to the filter placement. IVCF (inferior vena caval filter) :P

Depending on the pathology report I am planning on a second opinion from Dana Farber in Boston. ;)

Greg....Please Note: A few of the other woman understood my "coral reef" description....What are you smoking??? ;D

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15 years 3 weeks ago #2038 by wendy
Hi Bubbles,

Sorry to meet you like this too...but welcome. I see you've got some good input here already, all I can add is: don't panic. A 5cm tumor can be a relatively non-threatening thing, it all depends on the pathology report. That comes after they remove the tumor, takes a week or so. Your description sounds like a papillary tumor, looks like a sea anemone. They are the least aggressive - MOST of the time.

If your husband has grade I, Ta, no further treatment might be needed aside from removal. It depends on the doctor's choice unless you are very sure of the territory and want to steer treatments another way. Some doctors will give a dose of chemo in the bladder, or recommend BCG immuotherapy..some won't.

Deb is right that a good TUR and clear pathology report should include a bit of muscle beneath the tumor bed, to be sure it is confined to the bladder lining and not through it. Read that link about staging and you'll know a lot more.

Sorry to hear about the other problems, I hope all goes well.

Take care,

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15 years 3 weeks ago #2035 by deb
Hi Bubbles;

This is my first time back to the forum in about a month. I am also a wife of a newly diagnosed hubby (54 y.o. with a 6.5 cm tumor; could not pee, lots of blood, had symptoms for 3 years and was misinformed by his Doc on what it might be; ended up with a Stage 1 High Grade papillary tumor and has just finished his first 6 weeks of BCG; next cysto will be 12/12/06). He is feeling good and hopes for the good news of non-reoccurence in December. But also knows this will be something he will always have to be vigilant in monitoring and maintenance regimes the rest of his long life.

This site was my salvation when I was so fearful that I could not sleep. I saw bears in the woods daily and was sure the docs might have missed something. But all is well for now, so let me offer some addtional information.

O.K. here we go, Wendy will tell me if I am off on anything:

Your hubby will undergo a TURBT (transurethral resection of the bladder tumor). The pros should consider doing a "bladder mapping" (otherwise known as a random biopsy) when they are in there cutting out the tumor. The mapping helps them see that there are no other smaller lesions elsewhere and that they can say they know what the bladder looks like now.

After the TURBT ask for a FISH Cytology test (more accrurate by far that a regular cytology test). That will give the Uro Team a chance to see that no more cancer cells are being sluffed from the walls after the original tumor was taken out.

The coral reef shaping that your eyes saw might be a papillary tumor. Docs often describe is as a cauliflower like outgrowth. The good news about Paillary type tumors is that they grow more into the baldder space and have a relatively small attachment to the lining wall as opposed to the CIS type that grow wide across the baldder lining and tend to invade the muscle layer sometimes faster than papillary types.

Make that the Pathology reports from the tumor removal show that a piece of muscle is also taken at the site of the tumor. To stage it correctly, one needs a piece of lining, the connective tissue layer and the muscle layer. Go to the following page for more info on staging and grading:

You said that the Prostate is enlarged. They can see it visually when they do the TURBT. They may even want to do a PSA as a pre-op test to see if it is elevated. They could possibly biopsy it if indicated by an elevated PSA while they are in there for the TURBT. He is abit young for prostate enlargement. Depending upon his family history it may be something to be concerned about or not.

You have not mentioned where your doctors are from and if you have gotten a second opinion. Please try hard to connect in with a major cancer center that has a well known Uro-oncology group that do a lot of work with bladder and prostate health issues. They will be the most effective tool in your fight. Best time to get a second opnion is after the TURBT and before the next step (but don't delay treatments or surgery too long after TURBT). Seek out a Pro that will get you on schedule for a second opinion about a week or two after the TURBT when you have the Path report back and know the Stage and Grade.

Our doctors at UCSF use Dr. Donald Lamm's protocol for BCG post TURBT for non-muscle invading tumors. You can read about Lamm's work also on the baldder cancer web cafe site. Maintenance therapy to keep the little pest gone after the initial removal is as important as the first 6 week treatment regime.

Whether you use only BCG or BCG with a chemotherapy drug will be up to you and the doctors, if that is the planned treatment choice.

Once you have the stage and grade you will then need to make the next set of decisions. If it has not invaded the muscle wall of the bladder then most centers will suggest the BCG protocol. If muscle is involved then more agressive treatments will be suggested (radiation and chemo or cystectomy).

I am a worry wart about where else could it be from a metastatic issue. The folks on this site and your Docs will tell you first things first. Get the Bladder Cancer on the run and depending upon its stage and grade they will then decide if you need to do more scans or blood work to check out the other areas of the abdomen or rest of the body.

This is a journey, one that you two will face head on with lots of good support systems. Family, friends and professionals. We even went to see a nutirtionist to make sure my husband is on the right diet and suppliments that the specialized cancer nutritionist and our docs agree upon.

If you need some names for second opinions this forum will also help you. Tell us where you live and we can give you some suggestions.

Last but not least, know that he can beat this thing and that the therapies are not too hard to take.

You are in my thoughts and prayers,

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15 years 3 weeks ago #2034 by Mike
Hi,,funny family - at least they are relaxing a bit - I KNOW just how scarey a C diagnosis is.

But Bubbles and her guy  :o

There she is doing a Woodstock with her bong and her Carol King hairstyle whilst her husband has IVF placement: In Vitro Fertilisation  8-) obviously a VEEEEERY liberated chap - perhaps better not to clarify where the placement is!  ;)

At least there seems to be a move away from panic mode and the bladder cancer seems less daunting than it sounded at first - had me worried, an entire coral reef :-?

Just think - less than a week and the bladder cancer will have been dealt with and your husband will be on regular check UPs! then he will be better off than 99.99% of the population as he will know the condition of the inside of his bladder!

Greg L-W.

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15 years 3 weeks ago #2032 by Mike

The bong reference made me need for an apology. ;D

I have found that research and awknowledgement of MRSA is much advanced in the UK. Either that or the health care system is such that admitting outbreaks does not bankrupt hospitals and finger pointing.

As for the clotting, they did not follow an order for Heparin while he was inpatient the first time (for the initial MRSA and I & D surgery).......All tests showed that there is not a conclusive condition that caused the clots. They are concluding reduced activity after surgery. Hubby usually works hard and physical about 12 hours a day. We are weening down the PT INR for the surgery on Friday. he is having IVF placement on Wednesday.

Thnaks again for sharing. I'll be back for updating and more advice I'm sure!

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