I wish you the best. Hang in there.

I did get an order for a CT scan and will get it done as soon as our local scan center can schedule me.

Death by Prostate Cancer? Old men, shut up and die.

recommended course of action was for doctors not to order PSA tests because it was supposedly upsetting too many men who it turned out didn't have prostate cancer. Idiotic policy!

It was only a few years ago that the recommendation was updated to prioritize early detection over not worrying some men who ended up not having it.

I have breast cancer (I am the 5th breast cancer in 4 generations). I hate Pinktober - and both the commercialization of breast cancer - AND - the boost which makes breast cancer, and no other cancers, a national tragedy. (None of my ancestors with breast cancer have died from it, and my mother (the one with two distinct kinds of breast cancer) is 92 with no evidence of disease - a status I share).

I also have sarcoma - a much more aggressive cancer, with a (general) fatality rate near 50%. (My personal stats indicate I have a very good chance of dying with - but not from - sarcoma.)

So neither of these are pity parties for me - but I have been through both.

Let me tell you three of the differences:

1. Reconstructive surgery

I had a small lump in my right breast. Removing it and the surrounding tissue left a scar visible to my spouse and no one else - even when I wear a swimsuit. The surgeon's skill in sculpting as she removed it meant there is no visible profile distinction between my breasts. Despite this, had I chosen to - I could have had reconstructive surgery on BOTH breasts - including augmentation to whatever size I wanted to be - and insurance would have had to cover it as medically necessary.

I had a similar sized sarcoma tumor on my right forearm. The surgical site is visible to everyone (not just my spouse) unless I choose to wear long sleeves all the time. I have a second rectangular scar on my thigh where they took the skin for the necessary skin graft. Again, visible to everyone (although less so, except when I am wearing a swim suit). To ensure the aggressive cancer did not regrow locally and spread, they had to remove all of the fat, and a little of the muscle, for a full cm around the tumor - and close it with a skin graft. That makes the scar very visible. If I want reconstructive surgery on my much more disfigured arm - visible to everyone - it is considered cosmetic (and I must pay for it entirely out of pocket).



The difference: The breast cancer lobby which obtained a "medically necessary" classification for cosmetic surgery in the wake of breast cancer, but not for cosmetic surgery in the wake of disfiguring surgery for any other cancer. And - as a bonus tied to sexualization of women's bodies - insurance is not required to cover what is known as aesthetic flat closure following breast cancer - surgery which rebuilds the chest wall so that complete removal of breasts is flat but aesthetically pleasing without requiring the creation of a fake breast.

2. Treatment

There's a whole lot more funding to find a cure for this national tragedy of breast cancer. Rapid advances are being made on a regular basis into the diagnosis, treatment, and cure for breast cancer. Sarcoma? Not so much. Admittedly, this is not only due to the additional funding breast cancer gets because it is "sexy" (not limited to the body part impacted, but to the glamour associated with having lots of celebrity endorsements, pinktober, etc) but also because there are a lot more patients with breast cancer. Rare disesases need more funding relative to the number impacted by the disease - not less - because treating our diseases will never be profitable to those doing the research.

3. Extras

A breast cancer diagnosis comes with lots of free goodies to make our journey more comfortable. Jewelry, massages, counseling, alternative medicine freebies. In-person support groups for yourself, friends, and family. People donate stuff to help the visible diseases.

A sarcoma diagnosis comes with none of this. 3.5 years post-diagnosis (end of the month) I will meet the first group of people I have met in person with the same disease I have. I have never been offered anything free-of-charge to make my journey easier. (And - I wouldn't have even though to have expected it - but for my experience with breast cancer.)

I see the same thing repeated with insulin. My daughter's annual billed care for her medical care tops $200,000 each and every year. About half of that is medication. Insulin has a "sexy" story tied to it - even though it is true only in rough outlines. (The insulin closest to the patented insulin (donated to the public) is still available very cheaply. The insulin with an exorbitant price tag is not - and never was - covered by the patent. It is entirely different. But most people believe that drug companies are profiting off of a patent dedicated to the public - leading to a cap on monthly insulin expenses. But not to a cap on medication for others with chronic illnesses that don't have the PR of insulin. I just had this conversation with my money guy - whose wife has T1 diabetes. He had no idea he was talking to someone whose daughter's drug costs far exceeded his wife's - who got no relief from the capping of his wife's expenses (and, in reality, was probably hurt by it - anytime a big player's voice is silenced (by being appeased) it means that voice is no longer raised for the general problem - since they no longer have the personal need to speak up - making it harder to craft general solutions - as opposed to one-off ones like those crafted for breast cancer and insulin-dependent diabetics.)

Obviously - the special treatment of some diseases at the expense of others is a sore point for me.

I have cystic fibrosis and was on my deathbed five years ago until a literal miracle drug came out called Trikafta. It’s ridiculously expensive ($29,000 monthly) but luckily I’m on Medicare and Medicaid so I don’t pay anything. But yeah, this drug should’ve been out decades ago but so little research money is available for cystic fibrosis due to the fact that it’s fairly rare. The CFF (cf foundation) is great but there’s only so much they can do.

... to Russ' family and friends. I am a very fortunate survivor of prostate cancer. Back in 2008, my primary care physician noticed a slightly elevated PSA, and a biopsy revealed the cancer in its very early stages. Because it was discovered so early, I was able to opt for less invasive treatment. Getting one's nether regions bombarded with radiation 5 days a week for 6 months still has permanent side effects, though.

I hope your husband pulls through, and, though it sounds hollow as I read it, I sincerely wish him the best of luck. He's already very lucky to have your devoted support. And you deserve support as well, even if it's only a sympathetic ear.

Sorry you had to go through the difficult treatment, but happy it worked.

Thanks for your kind words. 💜

My husband's prostate cancer should have been found well before it was, but our PCP at the time wasn't the greatest and was too distracted by the conversion of his practice to a "concierge" one.

Thank goodness though, because we refused to pay a couple thousand each just for the privelege of seeing him and so had to find a new PCP. Upon seeing my husband's elevated PSA, he immediately "strongly suggested" he see a urologist. That led to the biopsy & diagnosis.

The cancer had already had time to wreak havoc. A year or so earlier and the surgery could easily have been a cure.

Very sad news though about the excellent "new" PCP. I think He has become ill himself. We received a letter from him last week in which he apologized for the fact that he is just too tired to continue treating patients. He's only about 50. We suspect some sort of cancer, but he didn't say.

I broke down & cried. By the letter itself you could tell what a fantastic person he is. Meanwhile, some very awful people are not ill. Sometimes this world makes very little sense.

... I'm here with an ear. Letting it all out can be cathartic. You can message me privately if you want.

I don't have much time to spend on DU these days so I miss a lot!