Update on my sarcoma

[Ms. Toad]

I'm now 2 years NED (No evidence of disease). That means my risk of metastatic cancer is low enough that I only need CT scans/X-rays every 6 months (instead of every 3 months).

I've gone from an indeterminate prognosis (somewhere between 50% and 80% survival at 5 years - not enough similar cases to be more specific) to a 97% survival rate at 5 years (based on tumor type, lack of local recurrence, size and grade of tumor, and number of months since the initial surgery).

Yay!

My breast cancer risk is also quite manageable. There's a 4% chance of local recurrence (based on additional genetic testing). So 7 years out I'm back to routine annual mammograms, with no additional treatment or screening.

Double yay!

And - just in case you haven't seen the meme going around about scanxiety:

People often don't realize there is a difference between general anxiety and scanxiety. For those of us with scanxiety, it's not about what might happen. It's about what did happen. It's not so much about worrying as it is about remembering.

Doctors find my concern about small risks perplexing. Although (thankfully) I don't have scanxiety, my worry about what seems to them to be minimal risks isn't irrational worry about what might happen - it is very much about remembering all of the minuscule risks which have materialized for my daughter and I. My daughter's diagnosis at age 4 with an adult disease. Her subsequent diagnosis with a very rare disease. My own diagnosis with a rare cancer (1% of all cancers is a sarcoma, and within that there are 50-100 sub-types).

[woodsprite]

1. So happy to hear about your NED status!

I’m working on 18 mo NED from my unusual recurrence after 15 yrs, so I’m still on the every 3 mo course for awhile.

I have definitely experienced scanxiety. My first go around I hadn’t realized how much it affected me until I actually broke down when I received the all clear letter after my last 5yr appt. This go round I’m all too aware and just go from one appt to the next. My friend calls it a cancer patient’s version of PTSD. She thought her mom was making it up.

Sending best wishes and prayers your way!!!

[Ms. Toad]

4. I've been telling my friends I'm NED . . . for the next 3 months.

I'm now shifting for NED for the next 6 months. But it is definitely PTSD, and appointment to appointment. Good luck for your next 3 months.

I've heard of sarcoma popping up after years - even decades - so I don't expect I'll ever think of myself as cured. Simply NED until the next time we revisit the question. I've got a very small bump in the same layer of tissue as the original sarcoma - completly different body part, near surgery for another issue - so I suspect it is a surgical remnant . . . but you never know.

[Lifeafter70]

2. That is great news

I love news like this. Having a son with a rare cancer I understand all too well about anxiety related to scans.

[Ms. Toad]

5. Best of luck to your son!

It's a lot harder when it is a child.

My daughter has a rare disease, which puts her at risk for a half-dozen cancers. She has scans every 6 months both to check for disease progression and for signs of the rare cancers (cholangiocarcinoma and pancreatic cancer) which often aren't symptomatic until it is too late to treat them. Much harder on me than my own scans.

[Lifeafter70]

6. Thanks.

Unfortunately he found out last year that his cancer had a recurrence involving his skull base and two "named nerves" as well as his left orbital nerve. He went through gamma knife last October. The good news was there was no new progression of his lesions in his last scans. So it should give him a couple of years maybe more. . Adenoid Cystic Carcinoma is rare like yours and not much research or treatment for it. But he is positive about living life to the fullest and takes it one day at a time.

[Lifeafter70]

8. Hope your daughter stays cancer free

Will keep you both in my thoughts for healing vibes. Yes it is harder when its your child.

[Lifeafter70]

3. That is great news

I love news like this. Having a son with a rare cancer I understand all too well about anxiety related to scans.

Sorry double post but its still great news

[LetMyPeopleVote]

7. That is great news

[PortTack]

9. Good news..stay well!!

[KS Toronado]

10. You live close to a industrial waste clean up site?

Cancer & disease in your town higher than national average?

[Ms. Toad]

13. The breast cancer is heredity

Even though they can't find the gene. 5 breast cancers in 4 generations (my mom got 2). All post-menopausal, all relatively benign.

Sarcoma is too rare to have good risk factors identified, but one they have identified is herbicides. I grew up in the middle of cornfields, with normal-for-the-time/area use of herbicides.

[KS Toronado]

16. Read a few years back

that countries that used a lot of Round-Up had the highest rates of Autism, and those that prohibited it's
use had the fewest cases. But add in "money in politics" and Congress did nothing, what a shame.
Damn pro-lifers in Congress don't even care about healthy babies.

[Ms. Toad]

17. My family used fewer chemicals than average,

Rotated crops, etc. But family farming isn't a place that has tons of time or money to do things right.

He was the first in the state to do controlled burning to control unwanted pasture greenery. He also tried goats to rid the pasture of noxious weeds, and replanted the pasture across from our house in native plants. After he retired (and had time to "play", he sectioned off the pasture land to rotate grazing (which forces the cattle to eat everything, not just the things they like best) - doubled the efficiency of that piece of pastureland.

But as a family farmer there's only so far you can go and survive. So sometimes it's not just money in politics, but the economic reality of life as a farmer.

[yonder]

11. This is great news for yourself, family and friends

ALONG WITH many folks on this board. I've always valued your intelligent, knowledgeable and thoughtful posts and look forward to many more years of the same.

I can imagine the weight that has been lifted with these latest results, scanxiety or not. We've been dealing with things on our end also and have come to really appreciate the value of hope.

Here's to more continued good news!

[Ms. Toad]

14. Thanks!

[Karadeniz]

12. Way to go... Bravo!!!

[Ms. Toad]

15. Thanks! n/t

[murielm99]

18. This is wonderful news,

a Valentine's Day gift!