My spring update

5 years 11 months ago #55003 by Jack R
Replied by Jack R on topic My spring update
Exsequor,

It is truly wonderful, and intimidating, that WE are the ones that make all the decisions about our care instead of having doctors tell us what will be done. Dealing with our insurers, over what they will cover is a different story.

Changing - and choosing - a new doctor is, for me a most unwelcomed task; I avoid it as far as possible. I expect extreme competence, availability and a team that listens, responds and reacts. If any part of my expectations are missing, I simply disappear and keep looking.

So, I currently have two urologists and have been waiting since late January for my upcoming initial appointment with one of the big guns at a NCI center. Uro #1 - who is really a GP - is close to me, only an hour and a half away, and readily available buy really limited in what she can offer at a rural clinic. Uro#2, 5 hours away, much longer in winter, is part of a large, hospital based practice, and offers an ALMOST full range of options; they have been great through BCG and chemo, and they know and have reached their limits. There is no way I would drop either #1 or #2 - they each provide good service to me, and they have no problem with me seeing both.

Along the way, I have seen three other urologists one time only, then moved on.

Like you, I reached again that point of having to decide on a new treater. I am basing my decision on the range of services available; uro#2 has nothing else to offer, but I will return as needed. Insurance coverage is, unfortunately, driving my selection of a new treater at the NCI level.

I made my selection, and hope the initial meeting goes well. Travelling 900 miles to the new doc is most unwelcome - just another of those annoyances, but it is what it is.

So, I will wind up with three treaters, each with something different to offer, and each great to have available. I hope your options of who to see works out well and provide you with the best possible care.

Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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5 years 11 months ago #54998 by exsequor
Replied by exsequor on topic My spring update
Jack!! Good to hear from you my man!

Haha..isn't it?? I think they should rename it bladder ANNOYANCE sometimes, then more then anything, lmao.


It really truly is annoying and (if you allow it) nerve wracking waiting for the next checkup, or to start the next treatment. Right you are!! Sadly enough lol.


Yes, I was getting that vibe off the bat, that especially with my scenario; the decision whether to intervene with treatment like BCG or simply watch and wait; is quite simply a not very simple one.

My biggest decision im weighing right now is which Urologist to see on this next cystscopy.

I have one schedule with DR shandra wilson in mid april.

I have one schedule with DR roseavear in mid May (the uro i've been seeing in the springs)


My sister, a nurse, says "If it's not broken don't fix it" - meaning I should just stick with Dr rosevear because dr wilson had good things to say about him, and he's done me pretty good so far. I mean through all this I've felt prety darn good and also had "good" pathology.

Annnnd a good part of my gut is telling me just to stick with him, and only switch to Dr Wilson if things get worse.

Buuuut another part of my gut and heart is telling me to go see Dr Shandra Wilson for this next cystscopy, and have her do a cystscopy for me for the first time, and essentially switch entirely over to her for my care. Most of this stems with how much more she talked with me / conversed with me / how much more "overall" knowledge I got from her during out first and only meet up, which was an hour consulation, that lasted more then the full hour.

I think I got more knowledge and insight from that, in that hour, then I have the entire time seeing Dr rosevear down here.

So part of my gut says, go with her, because shes the specialist's specialist, and because she handles sooo many more BC patients then Dr Rosevear (all she treats is BC - where as BC is only a smaller percentage of his overall patients).

But I just can't friggin decide. And I know no one can decide for me, which doesn't make it any easier :lol:.

But I got to make my mind up within the next week or two, because if I go with her, my cytscopy with her will be in mid April.

Again, she says she trusts him, and trusts my care with him. His care includes the gameplan I mentioned in this first post. Based on what I learned from her a few months ago, she would have a similar game plan, to my current uro, I just wonder if her larger expertise would be of significant benefit to me (whether it is spotting things that dr rosevear doesn't have the experience to notice; or whether it's a treatment method she's developed specifically for NMIBC/LG BC patients that perhaps my current uro doesn't know of or utilize.

I know the consensus on here is to go to a cancer center / a specific bladder cancer urologist. So based on that consensus alone, I should already be switching fully over to dr wilson.

Please someone give me some insight. This become a tough, very tough, decision for me to make.

Thanks all and much love

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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5 years 11 months ago #54991 by Jack R
Replied by Jack R on topic My spring update
Exsequor,

Annoyance. Very good way to describe the daily grind with BC. It seems like we are always waiting for the next checkup, or waiting to start treatment for recurring cancer.

The decision to "treat or watch"is complicated. So many descriptions of diagnosis, treatment and outcome from others on this board sometimes makes it seem that there are no hard and fast rules.

I am always happy to wait and see, as long as I an affirmative answer to my question, "will waiting increase the chance of the cancer becoming invasive".

It sounds like you are doing OK and making the best of this trip down BC road.

To you and the family,
Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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5 years 11 months ago #54986 by exsequor
My spring update was created by exsequor
So I haven't been on here in a while, been busy with my mind almost entirely else where. Work, family life (new daughter, my second, coming in August), travel (the snow storm at ameristar blackhawk the other night was incredible), and everything else.

So I got my TURB resuts back from my second TURB sometime about a month to a month and a half ago. It came back the same as the first TURB (low grade, NMI)

My doctor talked about this probably not going to be what ends up killing me, saying that I'll very likely die of a normal person death like getting hit by a car or having a heart attack. He said I am very lucky. He also said that he doesn't want me to feel like he is sugarcoating things, but that just he really thinks I am fortunate and have a good scenario.

He said my biggest issue, so far, will be the annoyance of having to deal with this disease. In may I'll have my third explorative cystcopy (and seventh time awake with scope in general; when having to remove my stents from my first TURB, my urologist had to go in three different times to fully get them both removed.. I consider that time to be three times lmao).

Then if it's like last time, I'll have several little few millimeter size tumors in there, and so they will schedule a TURB a couple weeks later. Rinse repeat. This is me predicting the future.

I am still trying to keep full hope that maybe this thing just won't come back. My urologist talked about him not wanting to use the big guns like BCG or a bladder chemotherapy without "getting to know the regrowth speed and size" more thoroughly to possibly get me to just yearly TURBs, even if it comes back every 4-6 months, according to him. Which is why he said this could be more of an annoyance then anything. He said each time these things come back, I have, statistically, a 15% more chance of it always coming back. Each time...it sounded like.

I am hopeful that it won't come back. In less pain then ever since this began. Plenty of energy. Was underweight pre-cancer diagnosis. I am 6'4" and I got down to 138 pounds before being diagnosed. I am not back up to not only a healthy weight, but the highest weight I've ever been, 178 pounds. I'd still like to gain 10-20 more pounds. But everyone has noticed that is close to me. My face and legs have gained the most. I have not been working out, but have been keeping my same high activity level I kept pre diagnosis.

Been eating healthier, but no where near perfect. However I do now juice every 1-2 weeks and I'll juice raw apples, carrots, beets, cucumber, kale, and more. It's very healthy being that it is naturally unpasteurized.

I also have been taking CBD Oil (77 % purity; no THC). orange flavor. My friend owns a lab, and I've always thought cannabis to be beneficial to warding against tumor growth. I think "smoking" it is the dilemma. I live in CO so cannabis is completely legal here for those 21 and older. Prior diagnosis I did smoke. Now I do not. I use a ceramic and glass vaprozing unit OR I use the CBD oil under the tongue. I am still waiting to find time to make the rick simpson oil.

Anyways, I want to hear from you guys. I hope all of you are well. I especially want to hear from someone who is dealing with a repeat occurence of a low grade, non muscle invasive bladder cancer like me, that so far, seems to come back in as soon as 3 months. As usual, thank you for the support & insight on here.

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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