Checking on those two things on the lungs

One thing I really like about UAB is that they have a patient portal, and you can email your physician a question at any time.  They promise a business day response, and the two times I've used it, they respond.

I decided to ask about those two things on my lungs from the latest CT scan as I recall before there was only one.  So sent this late on a Friday, so they got it on Monday, and I got my response this morning:
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To: Sonpavde, Guru - Hematology/ Oncology (Patient Portal - Hematology/Oncology)

Sent: 08/01/2015 01:42 p.m. CDT

Subject: CT Scan
Thank you for your message. It has been successfully sent to the appropriate care team.
Dr. Sonpavde,
Something has been on my mind since my visit Thursday. The Resident, I believe that is what he was that went over my CT Scan results, said that there were two nodules on my lung but nothing to worry about because they were there before. I do not have access to the CT Scan report when I received the PET scan but I seem to recall only 1 small mass on my lung; The latest CT Scan shows two, both that appears to be larger than the original mass identified with the PET scan.

Can you check this for me? I don’t have access to the reports using this online portal. Many thanks, Greg Loughlin 251.767.0985

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He replied:

From: Sonpavde, Guru P MD
To: Patient Portal - Hematology/Oncology;
Cc: Subramaniam, Sandy;
Sent: 8/4/2015 09:56:25
Subject: RE: Sonpavde, Guru - Hematology/ Oncology : CT Scan   

This is the CT chest report and I would monitor but not change therapy now- changes at this size are not interpretable- unlikely cancer in my opinion:

Tiny 6 x 5 mm subpleural left lower lobe triangular shaped nodule, very likely a benign intrapulmonary lymph node. This does appear increased slightly in size in comparison with the outside diagnostic chest CT, probably due to differences in slice thickness but CT surveillance is suggested in this patient with known malignancy.No other potential intrathoracic metastatic disease.

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I really like this quick, matter of fact communication between my doctor and me.

It didn't have to come to this

I am shivering as I write this due to one of the, thankfully infrequent, waves of nausea that has overcome me for a minute.  But it goes away.  The frustrating thing is, as I learned this past Thursday, it didn't have to be this way.

Thursday I went in for my CT Scan to see how my cancer was responding to chemo.  A resident was brought in to compare this scan with the previous to see if the cancer had spread.  He stated everywhere  looked good, no new growth.  He pointed out that there were two lesions on my lung, they were noted there before, hadn't grown, and didn't show metabolic activity so they were probably just  cysts.  So that's all good news, except I distinctly recall one cyst on my lung not two.  I didn't really follow up on that because I was totally shocked by the next revelation.

If you have read my blog you recall I had a biopsy done on by bladder in December 2014.  That biopsy came back negative for cancer; just "cell material and fibrin".  Based on this cancer was off the table and that area of my bladder was labeled "Chronic Inflammation Disease".  I kept going back  to my doctor with the same symptoms and finally, 5 months after the first biopsy he decide to do another.  Both biopsies my physician noted a pinkish area with a white (probably stone material) in the middle.  The first biopsy had around a 2mm specimen and the second over 1.5 X 3 CM specimen, much larger the second time.

The second biopsy came back with Muscle Invading TCC Hi Grade.  A dangerous situation.  I had always assumed the physician just didn't get a large enough sample the first time.  Obviously there was cancer there so how did he miss is it when collecting the specimen?

Well, he didn't miss it.  I had the original slides from the first biopsy sent to UAB Hospital Lab to re-examine those slides.  The UAB lab report, on the slides that Mobile Infirmary lab said was clear of cancer, stated that "Most of the lesions represent NON-INVASIVE, high-grade papillary urothelial carcinoma".  Basically the slides in December showed a dangerous cancer caught early that had not yet invaded the muscle layer of the bladder.  Papillary cancers look like "Pimples" growing inward from the bladder wall.  Basically, pink with a white head.

All literature says treatment must begin within 3 months of diagnoses or risk of death is much greater.  With a non-invasive diagnoses in December, I could have had that area resected with margins via a procedure known as a TUR and then BCG treatments.  I would not have had to have my bladder removed, my prostate removed, and a urinary diversion performed and this awful Chemo.  Treatment with non-invasive cancer has a 96% 5-year survival rate.  Treatment with Muscle Invasive like I have now, depending on final bladder pathology, the 5-year survival is anywhere from 46% to 69%.

That's the difference 5 months delay in treatment makes.

Anyway, that's the shocker for me but I realize I cannot focus on that because as it is I have to deal with the reality of where  I am at and not where I could have been.  I'll pick my head back up and keep fighting this thing.