Friday, June 14, 2013

The verdict is in ~ Intravesical chemotherapy starts 06/22

We went to Cancer Treatment Centers of America this morning (7 am through 3:30 pm appointments). We saw the oncologist, urologist, Survivorship review, etc.

When comparing her cancer to other cancers in order of treatment options, Bladder cancer is a tough nut to crack. Because Penny has had bad Urinary Tract Infections for her entire life, her bladder is not what one would call.... fully viable (her immune system is constantly "engaged" regarding an issue with her regarding infections). Her left ureter and left ureter opening in her bladder is problematic (and the tumors keep popping up right next to that opening). The fact it is "High Grade" and continues to be so every time a tumor is removed every 3 months, Penny is looking at the small "chance" of the cancer spreading outside the bladder via the ureter, kidney, or lymph node if these cancers keep coming back. If her bladder was healthier, we wouldn't be as worried about it.

After discussing multiple options with the Urologist (BCG, Mitomycin, Bladder removal) and going over the Lab results/pathology... Penny readied herself to go with Mitomycin. We then saw the Oncologist, and we discussed the pro and cons of all the options. Then we started getting scared as the reality of what Penny has was emphasized.

A natural reaction (and unexpected, as we thought we had discussed everything and were prepared for the discussion). We weren't, there is nothing that can prepare you for a punch in the gut..... and that is, she will have cancer in some shape or form as long as her bladder remains in her body. So, at some point... the odds are that Penny will most likely / eventually have to have her bladder removed (and a neo-bladder created out of a small amount of intestine). This is surgery that is far beyond a mastectomy, this is major surgery affecting multiple organs (and Penny does not do well under such surgical conditions).

So, because of the fact that Penny's cancer is not within the lining... we are trying one more time and instead of 6 weeks of BCG, she will go the route of chemotherapy (Mitomycin) once every Friday for the next 6 weeks starting on 06/22. Once finished, she will undergo another cystoscopy in the beginning of September to determine the state of her bladder (and if the chemo is successful).

During lunch (when we had a 2 hour window), we went to Illinois Beach State Park to enjoy a walk along the beach and enjoying the shore/waves. We then met to the Osteopath and Penny was "adjusted" to the point that much of her pain subsided.... a miraculous endeavor.

We then went home immediately to discuss these issues with Travis.  

Tuesday, June 11, 2013

Our fundraising page is now being featured on the main webpage.

Everyone, an incredible thing happened a couple of hours ago. Our fundraising page is now being featured on the main GiveForward webpage (one of 5 fundraisers given that space for more exposure). They did this after interacting with us today regarding the news that Penny's cancer recurred again and the pathology report indicated the cancer is "High Grade" (and our fundraising coach was so concerned, they even introduced us to a medical bill consolidation/mediation company and that company waived their normal $200 fee to take our case given how difficult it is to deal with so many providers and the insurance company management of the billing/payments).

So our fundraiser will be getting more exposure.

The blessings continue despite adversity.....

The pathology report has been made accessible to us ~ it is High Grade "papillary urothelial carcinoma".

The news is mixed (good news and not so good news) - the pathology report shows that the tumor was high grade, but that the cancer has not invaded the muscle tissue within the bladder wall.

In 2004 the World Health Organization developed a new grading system for early bladder cancer, which is increasingly being used. This system divides bladder cancers into the following groups
  • Urothelial papilloma – non cancerous (benign) tumor
  • Papillary urothelial neoplasm of low malignant potential (PUNLMP) – very slow growing and unlikely to spread
  • Low grade papillary urothelial carcinoma – slow growing and unlikely to spread
  • High grade papillary urothelial carcinoma – more quickly growing and more likely to spread
According to Penny's pathology report, she is in the 4th group.   :-(

Here is a diagram of a Bladder (and the different types of non invasive and invasive cancers):

Here is the pathology report below:

4 Specimen(s) Received  - Diagnosis

A: Bladder tumor
  • Note: The TUR specimen shows a high grade papillary urothelial carcinoma. It's very difficult to evaluate stromal invasion due to cauterized artifact.  Fragments of muscularis propria are present, and there is no evidence of invasion.
  • Gross description: Specimen part A labeled "Bladder Tumor" is received in formalin and consists of more than 15 pieces of pink-tan soft tissue ranging from 0.1 to 0.8 cm in diameter, aggregating 2.5 x 2 x 0.3 cm. All are submitted in cassette A1.
B: Bladder biopsy posterior wall
  • Note: Nothing to note
  • Gross description: Specimen part B labeled "Bladder Biopsy Posterior Wall" is received in formalin on a Telfa pad and consists of a single piece of pink-tan soft tissue measuring 0.2 x 0.2 x 0.1 cm. The entire specimen is submitted in cassette B1.
C: Bladder biopsy right wall
  • Note: Nothing to note.
  • Gross description: Specimen part C labeled "Bladder Biopsy Right Wall" is received in formalin on a Telfa pad and consists of a single piece of pink-pale tan soft tissue measuring
    0.3 x 0.1 x 0.1 cm. The entire specimen is submitted in cassette C1.
D: Bladder biopsy left wall
  • Note: The biopsy reveals rare enlarged cells on the mucosal surface. There is no evidence of malignancy, confirmed by immunohistochemical stains of CK7, CK20 and Ki-67.
  • Gross description: Specimen part D labeled "Bladder Biopsy Left" is received in formalin on a Telfa pad and consists of a single piece of pink-pale tan soft tissue measuring 0.2 x 0.2 x 0.1 cm. The entire specimen is submitted in cassette D1.
Specimens Taken: 5/31/2013
Specimens Received by Lab: 5/31/2013
Specimens Lab Pathology Report: 6/4/2013
As you can tell, we'll have much to talk about with the Urologist and Oncologist this Friday. As the tumor keeps reoccurring at the entrance of the Ureter going into the left Kidney (5 out of the last 6 Cystoscopies), we may have to get more aggressive in our treatment plan. The thing is, Cancer Treatment Center of America believes the previous pathology (their interpretation) was that her previous biopsies should have noted the cancer as being "High Grade", not "Low Grade" based on their review of the specimen stains done previously. So we are pretty upset as our treatment plan may have been different during the previous 18 months of treatment.

~ Steinar

Monday, June 10, 2013

I received a denial from the VA that makes no sense.

I received a letter from the VA on Saturday (a "denial" regarding "Decision on Waiver"). I haven't a clue what this decision is about as it states:
  • "Dear Veteran - your request for a waiver of your co-payment debt has been thoroughly reviewed and denied based on one or more of the following reason(s): There is no current balance on your account".

So this appears to be a cart before the horse decision by the VA (as far as I know, I haven't had a decision yet from the VA regarding my hardship request for VA healthcare, so how can they then make a decision regarding copayments or copayment debt that isn't there as I have not yet been approved for VA healthcare)? I am thoroughly confused at this point (and I am usually pretty good at keeping track of what is going on around me).
If anyone has any insight regarding this, please go ahead and comment to bring me up to speed. :)
In the interim, we are scheduled for this Friday to meet with Cancer Treatment Center of America regarding the pathology report from Penny's surgery 2 Fridays ago (Oncologist, Urologist, and the supporting specialties). We wish we could move the meeting up, but they have many patients to work with so we will do our best to remain patient.