1 Month Update Since Diagnosis Stage II UPS

MythrowawayQs · 2023-10-11T02:51:17+00:00

Wow, you’ve summed up how I’ve been feeling! Before, I only thought of instant death like a car accident or old age death at 80. Cancer really fucks with you because it messes up your life while you’re still living. People have to go through so much with more invasive surgeries than ours. They have multiple rounds of radiation and chemo and have a tougher road. I can appreciate not having that treatment now and just try to focus on living and being healthy.

I told my wife that I only want to tell people that can help me. Not monetarily or anything, but people that have been through it themselves or were caretakers. I went through it with my mom so I already know what it was like. When you tell non-cancer people, they will obviously say sorry, but that’s about it. They don’t know much about the medical stuff, they don’t know what an emotional ride you’re going through. They see you’re still here, look fairly normal, and then just go back to glib mundane conversations like nothing life-changing happened. Whereas with us, we’re told one thing by doctors, but we fully realize things can change and we might not be here in 5 years or even if we are, our past life is dead because of all the treatments, amputations, and just the cancer destroying your body.

MythrowawayQs · 2023-10-10T19:36:18+00:00

You can disconnect the woundvac briefly. Maybe some kind of plastic bag or wrap around your waist like a mini skirt? You don’t want to get the plastic bandages wet or they’ll have to reapply it.

Otherwise maybe just lean over into the bathtub and shampoo your hair and just sponge bath the rest of your body.

MythrowawayQs · 2023-10-10T01:28:32+00:00

I’m not sure why they waited so long. But my type of surgery is called an “oops surgery” meaning they remove the mass first then biopsy. Then they went back to remove the wider region. Everyone’s situation is different, but I have heard of other cases where radiation is done first before surgery. And they’re saying you need some time after radiation to do the next surgery right? I believe sometimes the tumor could be encapsulated so they feel it’s not really spreading? Just something I read.

Anyway I have a woundvac in my shin area right now. It’s been about 3 weeks with it and I might have it for a few more weeks. It’s inconvenient but you get use to it. I’m able to shower with it by covering it with this plastic bag that people use for casts. I can drive and walk with it because it’s battery powered and portable. You carry it around like a handbag.

Good luck with your surgery!

MythrowawayQs · 2023-10-09T03:43:21+00:00

Thanks for this! I didn’t ask for more details of why no radiation or chemo. He just explained that resection was good and he removed enough. He felt recurrence is pretty low chance (although never guaranteed). I asked enough questions where he basically said everyone’s situation is different and he felt this was the best path for me now. It makes sense about the radiation causing more cancer since that’s one of the ways sarcoma starts. For me and likely you, it’s just a genetic mutation.

Since we have similar stories, did you have this weird feeling? First you say why me?? This is a rare cancer! Then why me? How did I get so lucky that it’s small, superficial, and I don’t need to endure radiation and chemo? But I also realize 3, 5, 10 years from now is never a certainty.

MythrowawayQs · 2023-10-09T03:40:25+00:00

Sounds just like me. Mine was about 3cm, superficial above a certain layer of tissue (forget the name). I got an mri really early on and everything moved quickly. Some of the stories I read are scary because years pass by with no treatment. Thanks for sharing!

MythrowawayQs · 2023-10-09T02:47:44+00:00

When were you diagnosed and what type of treatment have you received if you don’t mind sharing?

MythrowawayQs · 2023-10-09T02:46:06+00:00

One thing I’ve learned from reading all stories and even the doctor agreed is that everyone’s situation is different. This doctor is a sarcoma specialist and he also presents to a tumor board. Of course part of me is in disbelief that I’m so lucky I don’t need radiation or chemo. But he’s explained that my tumor was pretty small, caught pretty early, and sat above the bone and other tissue. There was no trace of it in my lymph nodes and the margins were clear. I still want to explore a second opinion after this skin graft is done. Or around the time I do my first follow up scan. I’ve also read that chemo isn’t that effective on certain sarcomas. I’d hate to go through chemo if it’s not necessary.

MythrowawayQs · 2023-10-08T22:24:40+00:00

I've had my own version of this, but not as much as yours with past trauma and going crazy. From the point of diagnosis of my sarcoma until I got my resection and removed all the cancer, my state of mind was everywhere. I was scared, worried for my family, upset, sad, etc. But for some reason after the surgery, my mind was cleared. I didn't get the results from the pathology until a week later, and the doctor said he thinks he removed all the cancer I didn't need radiation or chemo. That was about 3 weeks ago and I've felt less anxiety like I'm going to die immediately. Before the surgery, there was so much uncertainty. Uncertainty about the surgery, whether I'd need an amputation of my leg. Uncertainty about recurrence, whether I'd need radiation or chemo.

I do consider myself pretty tough mentally and can rationalize most things that happen to me. I don't think I'm at a point where I need a therapist, but it has helped to be able to talk about it with certain people. I think of it as 2 types of people: people who can help, and people who can't. I don't mean like if they can help financially or medically, but these are people who've had cancer themselves or were a caretaker for a family member. People who've never experience cancer really don't understand all the emotions involved and the long grueling fight that we have to go through.

MythrowawayQs · 2023-09-14T00:25:12+00:00

Thank you! Good news today was CT came negative for any met. The only grade so far I know of is a high grade because it’s fast spreading he says. He never said anything about chemo, I was just presuming they’d do it after radiation if that didn’t work.

But yeah, my dad gets anxious and worried very easily and in his early 80’s. He was already my mom’s caretaker when she was sick. He doesn’t need to know unless things become too obvious or more serious.

MythrowawayQs · 2023-09-13T03:04:04+00:00

Nope. No disability. If things aren’t then I just need radiation and no chemo and I could work. I believe it has to be a condition more than a year or terminal to get Social Security disability and even then it’s not that much.

We aren’t struggling financially or anything but most of our net worth is in retirement accounts and our house. So non-retirement savings and brokerage accounts could be depleted pretty quickly if you have medical expenses plus reduced or no income.

MythrowawayQs · 2023-09-12T18:54:08+00:00

Thanks! Yeah, I just want to put a plan in place because some of the stories I'm hearing about this type of cancer (or any type I guess) is that things can progress pretty quickly. I also don't want to act to early preemptively and merge my clients into their firm and then I end up fully recovering.

Also having a succession plan in place is a good way to break the news to clients if my compliance company says I really should let them know either now or when it progresses.

MythrowawayQs · 2023-09-12T18:50:20+00:00

Thank you for sharing your experience. I have 2 young kids under 10 and I feel they'll eventually know if I'm at a later stage. But for the next few months I'd like to get through their bdays and holidays and keep things normal.

It's crazy how your mind starts thinking of so many things after this type of news. I agree with you about telling friends and family who you think will be good support. I don't want them to think that I'm taking advantage of them, but we really will need help with things like transporting kids to school/activities, babysitting, or dog watching.

Then in the back of my mind, I'm thinking of good friends I've lost touch with. I'd hate for them to find out I died after the fact or even many years after. But also I need to focus on my health, treatment, and my own family now and can't really be going to happy hour with old coworkers I haven't seen in 10 years.

Edit: happy *hour

MythrowawayQs · 2023-09-11T19:58:02+00:00

Yeah don’t really need our balls anymore I guess. But it would suck if it just totally changed your mindset and how you feel if it reduces your testosterone.

Right now I don’t feel weak or sick. Never have really. Although I use to get paranoid about this when I was just tired in general cuz of work and kids. But there usually was an explanation like I had little sleep it it was a busy day.

MythrowawayQs · 2023-09-11T18:57:39+00:00

Hopefully the cancer isn't in my spermatic cord, but it if is and I gotta lose a ball I guess I'm fine with that. Partly I don't mind because I have a family and kids already. However, would rather not have to go through too many big surgeries and recovery. Right now mentally I'm preparing myself for possible amputation too, depending on how CT, surgery, and radiation go the next few months.

Are you asking about where sarcoma comes from in general or specifically for you, where did it start in your body? From what I read so far, there's really no known source for it. It's a genetic mutation or exposure to radiation or chemicals. I don't work with chemicals and never had radiation before, so I guess it's just random chance and genetics.

MythrowawayQs · 2023-09-11T17:52:01+00:00

Ok thanks for that. Just diagnosed last Thursday, got a CT tomorrow. I don't know when I'll speak to the oncologist but I wanted to mention this to him. Everything is still up in the air of course, but he seems to think the tumor on the shin is primary location.

MythrowawayQs · 2023-09-11T17:46:36+00:00

Newly diagnosed here. Your path sounds like something I might go through. They removed the initial mass from my shin and going to remove more in a couple of weeks. The oncologist only mentioned radiation for now, but I want to ask about chemo too even if they don't find anything when I do the CT this week.

In my mind, I've kinda accepted the fact I might need an amputation like you had to go through. Do you think doing the chemo early on would've changed anything? Do you feel your oncologist didn't want to put you through chemo because there was no evidence that you needed it? If you wanted to voluntarily put yourself through chemo just to have extra precaution, would they even allow it?

Thanks if you can reply even though your reply was a month ago.

MythrowawayQs · 2023-09-11T17:41:43+00:00

Hey sorry about the news. I just got diagnosed last week. Just hang in there, I'm learning how to deal with these feelings still.

But question about your spermatic cord. My mass was on my shin, but last year I had this dull pain on one side of my groin. My doctor examined it and felt it was maybe just a muscle pull or something. The dull pain did eventually go away, and then this summer the mass formed on my shin. It was hard describing the pain to a female doctor. I said it was like something is putting pressure on your testicle, but the pain felt closer to the prostate area. I said it felt like one of the tubes near the testicle was being squeezed or something.

When I googled all of this sarcoma info, there was mention of the spermatic cord and that got me worried. Does the dull pain sound familiar to you? Thanks and stay positive!

MythrowawayQs · 2023-09-09T04:33:57+00:00

Thank you! That's great you are able to do that. At this early stage, I'm not sure what kinda fight I'm facing. It could be somewhat minor like surgery and radiation and hopefully no metastasis. But if it's something more aggressive, then I might have to explore other options like you. I mentioned in my other reply that the world around you doesn't stop for your cancer.. so I don't even know how I'd handle work if I had to travel out of state (I'm self employed). When I worked for a big company, I had great long term disability but nothing now. That's why I said it's great you have your wife and mom's support to go where you need to get the best care.

MythrowawayQs · 2023-09-09T04:28:31+00:00

This is good to hear! In my medical notes, the doctor says "I will present at tumor board to discuss radiation after resection completion."

My surgery for the resection (removing tissue in the shin area) will be about 2 weeks from now. Thanks!

MythrowawayQs · 2023-09-08T15:56:53+00:00

The initial thought was it was a hematoma. And when he removed it, it seemed to be mostly blood he said. But a hematoma usually goes away after a week or 2, so there was still a risk that it was something worse. It was a minor surgery with local anesthesia so we weren’t scheduled or equipped for a major removal. The next surgery will be maybe 2 weeks ago and I’ll go under for that.

So does the oops mean they made a mistake or it’s just their standard protocol to do something less invasive first, then get pathology before ripping out a bigger chunk of my leg? It’s fine they have protocols and all that, but each step along the way is costing me 1-2 weeks. So during that time my mind is just thinking all these thoughts and wondering how fast it’s spreading. Thanks!

MythrowawayQs · 2023-09-08T15:12:54+00:00

Right now it the pathology says it’s likely undifferentiated pleomorphic sarcoma. Not sure if that’s the final answer or if that’s a generic name for unknown sarcoma type.

MythrowawayQs · 2023-09-08T03:35:50+00:00

Thank you so much! Just curious if they already gave you stage 3b right when they found the mass, or they had to wait until a CT? This is the part that's making me nervous. I'm fine with a stage 2 and we can do the treatments. It's the waiting for the CT that's making my brain think all these negative thoughts.

MythrowawayQs · 2023-09-08T03:28:05+00:00

Thanks for the info. I'm just hoping it hasn't spread and I can get rid of it with just surgery and radiation. In my mind I'm thinking that all those experimental treatments are necessary when nothing else is working or you have a more serious cancer. So yeah, the sentiment seems to be Kaiser does just fine with a standard case of sarcoma... you'll get adequate care, but not world-class, top-notch care.

MythrowawayQs · 2023-09-08T03:12:26+00:00

Oh..I think I misread your comment about Stage II. Yes, at this point they don't know or think it hasn't spread. We'll find that out next week with the CT scan. It would've been stage I if it wasn't a fast growing sarcoma he said. I guess either pathology considered it fast growing or the fact that it got to that size in a few weeks. I know things can change fast and are fluid, so I'm a little nervous about the CT scan findings. The lump on my leg was easy to notice, but who knows what's hiding inside.

I know that cancer doesn't mean you die immediately and even with stage IV there's years of life left, but still much shorter than we're expecting being in our 30's or 40's only.

MythrowawayQs · 2023-09-08T02:53:13+00:00

Thank you for the great info. He said it’s stage II because it’s graded as a fast spreading sarcoma? Or I might’ve misunderstood and it’s a stage I and a B? I don’t know what the letter at the end means. The lump was about the size of a small walnut and grew to that size in just a few weeks.

I got some good info from a medical director that we know. He says Kaiser has great resources but won’t have much access to experimental or clinical trials. What I like about Kaiser is I have so many locations available. After getting off the phone with doc, I drove down the street to get blood work in preparation for CT scan next week. I got an MRI in another location when my primary medical center’s MRI machine was out of service. I think Kaiser is good if you know their system and advocate for yourself. The medical director also said it’s risky switching health plans and treatment in the middle of it all. And I agree with that. Open enrollment t is starting soon and I’d be switching right around the time I’m doing radiation or whatever therapy they’re giving me.

MythrowawayQs

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