Lots of issues going on, need support

prayers for you sorry im no help

Becky,

Looks like you have lots of things to weigh heavy on your mind, not to mention your current discomfort and worry that things are not working as they should. But, the good news is that the PET scan did not show any distant metastasis! How great is that?

Since you have a urethral tumor, it is not surprising that you continue to have urinary urges, since there are a lot of sensory nerves in there. I don't know if it would be appropriate in your case, but you can ask your doctor about a long-acting nerve block to help you with that problem. They can last a few weeks to up to 3-6 months. If this pain is considered to be a permanent problem, they can do an ablation procedure that permanently stops signals from that nerve. If you think you may regain use of your urethra in the future, ablation would not be a good choice (at least not yet). Anyway, something to discuss with your oncologist.

Regarding the supra-pubic catheter change; make sure to let them kow that you are having a lot of pain and discomfort with it. Ask for them to use a topical anesthetic gel for removal and reinsertion of the catheter. If the pain is deeper, they can use a local anesthetic injection. You might try calling or emailing your doctor in advance to find out what your options are. They could even give you some light sedation, such as Valium or Versed, but you'll need a driver. The main thing is for them to know there is that problem to deal with. Supra-pubic catheter changes generally should not be painful, but if there is skin excoriation around the tube, or they will be increasing the diameter of the catheter, plain lubricant may not be good enough.

Hope this helps.

Jan

Oh my! You're having to deal with an over abundance of issues. I'm so sorry you're experiencing all this. Please come here to rant and rant and rant! And to rave.

kathy

I have bladder issues due to IC so I understand that part oh to well!

Are you looking to just get relief for that or just asking if anyone can relate to any issues you are having? It is a lot so I feel for you :/

For bladder issues I had spinal nerve blocks done and it helped a lot, maye 30% decrease in pain, but you have to go frequently for it to be permanent.

Some people I know have Interstim devices and say they work.

I am so very sorry you are going thru this and send healing thoughts.

thank you all for your responses, I am going to talk to my dr about the ablation for my constant urge to urinate because my bladder is coming out permenant anyways, They are going to remove what they would during a hysterectomy and they are going to remove my bladder and even part or all of my vagina, not all of these places have cancer but my vagina has tons of tissue that is necrotic due to fibrous tissue, after i stopped radiation from my rectal cancer it started growing and it grew fast, the spot down at my uretha i thought it was just an infection or something, i had no idea it was reoccuring cancer, i have this really fould smelling fluid coming from inside my vagina or somewhere down there, I am also since my chemo noticing this dead tissue and the mass breaking apart and my dr said that is a great thing, he said it means the chemo is working and killing that mass, i notice if i keep myself very clean and keep a barrier cream down there, then it really helps, i just wish i could stop the constant feeling of having to urinate threw my uretha, i dont go out hardly because of this feeling and i dont like to go out because of the smell, i go to do my chemo the first day for 6 hours and then i get a pump to go home with, but sitting there is very embarrassing because of the odor that is so strong from me, i dont even want to go back, the nurses give me ativan in my port though so i sleep and i dont worry so much about it. so that helps, anyways after my 3rdchemo round, i get to have a pet scan to see what the chemo has done, I surely hope that its gone, that would be wonderful and i know god is going to make this happen, so that i can have my surgeries., anyways, i am going to ask the dr about all these ideas, my nurse did tell me that they would not be giving me anything to help with my supa pubic cath change,I am know freaking out, This is my first change and with all the spasms that i am having still, i just dont think its fair, maybe i can talk to the dr directly and just tell him if he doesnt help in someway then i will not be coming in to have it changed or something lol, that is how bad my anxiety has been over the thought of the change out, lol. I will keep all of you posted and if there is any advice from anyone about a way i can keep these urges to urinate from below down , please let me know,also the smell of the necrotic tissue and drainage, is there a product that works? sorry for the long post, thank you guys again, becky

I know it's easier said than done, but don't worry about any odors while you're doing chemo. I'm sure those medical people are used to it. If it's bothering you too much you could try dabbing a bit of Vick's Vap-O-Rub under your nose.

I agree with you, contact your doctor about the procedure. You shouldn't have to suffer even beyond what you're already going through.

You have a wonderful attitude and it will help you so much as you go through all of this.

kathy

Becky, I'm sorry you are having to deal with all of this and then also to have to jump through hoops to try and get the attention you need. I suppose the nurse was just saying that there was no sedation planned for your catheter change. But, I think if you speak to your doctor directly (or at least make sure he gets the message), there should be a reasonable solution for you. Tell him what you told us, that you are having a lot of pain anyway, and extreme anxiety about the catheter change. He should be able to at the very least use a topical anesthetic, and maybe even a little local anesthetic injection. I think it is even OK to tell him you are considering refusing the catheter change if you cannot have something for the pain.

I'm not sure what to do about the smell from the necrotic drainage, other than frequent changes of the drainage pad. Kathy is right that the nurses have smelled it all before, so don't worry about them.

Are they planning on building a ileal conduit urostomy if they are removing your bladder? Once all that necrotic tissue is removed, that will take care of the smell anyway. Definitely ask about the ablation for the sensory nerves, because that could probably be done prior to your surgery through pain management. They do a temporary block first to see if it works for you, then the permanent ablation of the nerves. They used to inject alcohol to destroy the nerves, but I don't know what they do now, maybe they use heat now (radiofrequency ablation).

Take care,

Jan

Becky,
You are one strong lady. It's your body and medical professionals forget that we don't all know the same as each other. You need to tell everyone how this is affecting you and that how bad the anxiety and the urges are. Jan's advice is awesome.

Kathy is right about putting some Vicks under your nose or rub it into the top of your chest. This sounds so unpleasant. I hope it ends soon. Do you know when you will have the surgery yet?

Give them hell if you have to!

Oh Becky,
I am so sorry that you have to live through this...just not fair...I know how scary and frightening thing can be when there is a sword hanging over your head and you don't know which way to turn...for the smell, I have found that 'we' smell things more than other do...usually we are oversensitive about it while the rest of the world doesn't even realise it...So don't allow that to stop you from living...I was diagnosised with vaginal cancer when I was 23 and went through the gamut...including the laser abalation of the vaginal tissues and that smelt awful...for months I thought that I could smell burnt flesh and rotting tissues...aparently I was the only one.
As for the fear and anxiety about the cath change...they used to put in and take out hemovacs from my stomach pre/post op and I would panic like you are...until I realised that what I was feeling was surface pain and burning but I felt practically nothing when they changed my cath (I have a nify star shaped scar on my abdomen where it was stitched in...it was the stitches that hurt.)
Ask your doc for some sort of anxiety meds, if ever you need them it is now...you need sleep, rest, laughter with good friends and some happiness...so isolating yourself from people is counter productive...keep those that you like and love close right now...you need the support.
Hugs and hopes that the cath change is painless...
Shaorn