Update on groin lump story

First it was there for 2 years.  Same size, same location.  4 doctors looked at it.

Then suddenly it grew huge, in the space of 2 weeks.

Then it bled for days, but was still there.

Saw my uro, said let's cut it out and check it for porocarcinoma

Surgery set, pre-op done.

In the 3 days before surgery, it simply disappeared.

Day before surgery, cancelled surgery.

The night that would have been post-surgery, it reappeared, same size as when uro saw it

Waited several days, intention to re-schedule surgery

Checked last night, not a trace or speck, as if it never existed.

Happy I don't appear to need the surgery at all, but I don't like mysteries that make no sense.

With the lumps recent events of coming and going, less inclined to think it was cancer.

Not going  to worry about it, if it comes back, will go back to uro, and will have him re-evaluate situation, if it needs to come out, then he can do it.

Not like I was itching for my first surgery of the year.

Meanwhile, the bladder spasms have entered a new phase, where all of them last 1-2 minutes a piece, no more short ones, going to hammer my oncologist to see where he is with the referral to Duke.

I lead such an interesting life, just wish it didn't involve things that hurt so much, I can think of better things to do.  I cringe now every time one of the spasms begins, because I know I will be left on the edge of total panic from level 10 pain.  The only saving grace is in my mind, I know it will eventually subside.

david

thanks Vickie. most people can't imagine having bladder spasms for going on 5 years now either, I have literally had thousands of them in this time. Never know when they are going to hit me, but boy, some will drop me to my knees. Feels like a firecracker exploded in my bladder, and you feel like you are going to die, but I always know in the back of my mind, that it will pass, and they always do. But a two minute one is the longest two minutes of my life.

there has to be an answer, there has to be a surgeon that is willing to take on such a lengthy and risky surgery, to rid me of this misery.

david

I now can see why my original urologist/surgeon left my bladder in place after my Urostomy surgery. He knew it would be risky. But his decision left me in a bad way. From my research, 95% of the time the bladder is removed during the surgery.

Also, the higher level surgeon I consulted with, said my surgeon should have left a Suprapubic port in place, so that my non-functional bladder could be accessed. This wasn't done either.

In this potential surgery, the risks are high. Death is a possibility, and having extreme damage to the rectal wall is great, this is what concerns the other surgeons. I wouldn't want to wake up in a recovery room and find out I had a colostomy was well as my Urostomy, rather not even wake up at that point.

Plus, none of the surgeons can guarantee that it would end the pain in that region, even the chance of making things worse. So far, there are no meds that work that can ease the spasms with my particular circumstances.

On the other hand, I am 60, and I do have advanced prostate cancer with severe chronic pain (aside from the spasms), I just can't imagine having to suffer with them for the rest of my life. It's a very discouraging no-win situation to be in.

Still waiting to see if a referral to this expert at Duke can be set up, and see if he would be willing to undertake the surgery. They are talking about an 8-10 hour surgery, and a min. of 2 weeks in the hospital, plus a long recovery time.

All this happened, because I was subjected to the faulty administration of salvage radiation for my prostate cancer in 2009. And the radiation didn't even remotely slow down the cancer, so all this damage was in vain.

Doesn't seem to be a real answer out there for me on this. I haven't given up hope, but its starting to seem like a hopeless situation.

david

David,

I remember awhile back you were prescribed the B and O suppositories.... at this point - with the frequency of the spasms - I would give them a try. Anything (within reason) is worth a try -- and it may work.

Having just had botox a few months ago (for migraines and cervical pain) -- I noticed that it is also used to treat bladder spasms. Let me see if I can find a link..... Has your doctor mentioned this?? Just another thing I would give a try....

Botox and Bladder Spasms:

www.newmobility.com/articleView.cfm?id=11987
www.medicinenet.com/bladder_spasms/page5.htm

Take care.... --Tina

David, I'm so sorry about all that pain you have to go through.
I hope the lump doesn't appear again.
Sending prayers and positive thoughts your way.
Stay strong!

UA

David, Botox is indeed used for bladder spasms. In your situation, though, I doubt it would be doable...here's why:

Botox needs to be injected into the muscle of the bladder. This is done in the clinic or operating room. First the bladder is flushed with a local anesthesia, via a catheter, which is allowed to thoroughly numb the bladder. Then a scope is passed up the urethra (urine channel) into the bladder. A small needle is placed through the scope and several injections are made into the bladder designed to spread Botox throughout the muscle of the bladder.

I've listed these meds a few times that I would think your Oncologist would want be trying to see if they help alone or in combination. Obviously nothing is going to take it all away, but added to the opiates you take, it could put a dent in the pain.

I haven't seen you mention any of these previously over the years and these are easily called into the Pharmacy where you don't have to wait for an appt.

Nerve pain meds are Lyrica, Cymbalta, Neurontin. As well as Elavil or other tricyclic meds.

Muscle relaxers are Flexeril, Robaxin, Skelaxin, Baclofen, Zanaflex and Soma.

All the ones I mentioned are very commonly used for nerve and muscle pain. It usually takes most of us a few tries to get a combination that is helpful.

I would be talking to your Dr. ASAP because just relying on the opiates as you know, is not working. Those other meds are specifically made for both of the types of pains you have which are spasms and nerve pain.

If you are having true 10 level pain throughout the day which is normally reserved for 1st degree burns and bones sticking out....then you need to be going to ER and coordinating with your Oncologist to add in other meds that could possible help some as you won't know until you try them.

In today's world of medicine, there shouldn't be a Dr. who is ok with letting his patient suffer this way every day. Same thing with taking so long to get you an appt. with Dr. Moul. It was back on the 29th of March that your Onco got you this name. For you to be having months in between even getting an appt. set up just isn't right.

Can you call and go ahead and set an appt. and that way your Oncologist just has to make the call or fax over the referral? You should already have a "package" of everything from your history to all surgeries/tests/treatments in order (as well as your Dr's office) from when you went to see Dr. K in Charleston to send to them.

Same thing with having an actual Board Certified Pain Management specialist who is knowledgeable about CRPS to at least make that diagnosis but who also is more up to date on all the treatments for chronic pain who can work with your Oncologist. I don't see what is taking your Oncologist so long to just find someone he trusts/respects and get an appt. for you.

It's one thing if everything was going well for you and you had a decent amount of pain relief we all wouldn't be pushing so hard. But I've been with my family members/friends who had terminal illnesses and chronic pain who all were able to at least live a good life each day and it is a shame to read week after week about you barely getting by and telling us of your extreme levels of pain.

We are all just concerned for you..

Sephie,

Without being repetitive, I am in a uniquely bad situation with my bladder, all kinds of things could be done if it could be access, but it can be accessed without major and risky open surgery, and just getting to it could complicate the situation even before it could be remedied.

david

Sephie:

No I think you are misunderstanding me. I take all information in stride, like a computer, I take data from all sources, then I sit around and process it. As you have given info/suggestions to me, I listen to all of them, then when I answer back - its nothing personal, I simply respond how an idea could be good, or give a good reason why it wouldn't , or respond with another reason or complication that I have.

On the botox suggestion, I was agreeing with you why it wouldn't work with me, wasn't arguing about it. The methods described certainly wouldn't work for me.

I think part of the problem with many of my HW posts, especially the ones directly about me, is that I tend to write in a very exact, detailed, and sometimes graphic way. That's the writer in me, I can best describe how I feel by writing it out as I do. Perhaps I should back off on the graphic nature of some of my posts. In those types, I am not venting, I am simply expressing how I really feel.

Of course I appreciate any help or suggestions, always have. And I hope those that I extend help to feel the same way.

As far as the spasms, I am 100% certain they are bladder only, have had too many of them, been experiencing them since November of 2008 right after my open RP surgery. It's possible too, that if my bladder neck wasn't totally scarred shut, that when the bladder squeezes or tries to, that it might be able to relieve some of the pressure, but it can't. Remember I had the failed surgery this past June, when my surgeon was unable to reach my bladder via my urethra? He could not get through safely, said it was one solid mass of scar material, and he was afraid of punching through my rectal wall.

Just unfortunate that there are so many "no" answers out there for me to find any relief. Even I have to feel, that it might just be a hopeless situation and I am just going to have to suck it up and suffer till I die.

david

All of those remaining options are being pursued, its just doesn't go as fast as one would hope in reality. I don't want to burn any bridges with my doctors by being a hostile patient. I am not their only problem child, and all their time and attention can't be focused on me, I understand that. Patience, is one virtue that I have learned to have a lot of over the years.

Reminds me, when someone asks you how you are doing, we both know in real life, they usually don't want to really know how you are doing, especially if they know you are dealing with something serious. So one ends up just having a polite conversation while avoiding the elephant in the room.

At HW, I have always been very open, both in my own situation, and when I am dispensing advice, help, or support to others. Just how I am in real life too. Just an open book, bad thing about that method, sometimes it can be more than the reader/listener wanted to hear. With me ,it tends to be all or nothing, not much of a middle ground with me.

David

Yes, to bring it back on topic. Now more than 2 weeks later, no sign of the lump returning, it is as if it never existed. Odd, considering it was at a constant size for 2 years, shortly before becoming large and bleeding. I feel pretty sure it must have been some kind of weird cyst,, not the characteristics of the cancerous lumps I have had in the past. None of them ever disappeared.

david

thanks and hugs, barb. hope you yourself are having a better day.

with the lumps associate with the porocarcinoma, they never shrunk or disappeared, though they did stay the same size for a year or two, like this mystery one did. my urologist did respond back to me since the op was cancelled, and said it puzzled him too ,because when he felt it for himself, he said it felt really solid and suspicious to him. Least for now I can scratch one problem off my long list of woes, as they say, like you, I am chocked full of issues.

david