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Question about peripheral neoropathy and doctors responsibility

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Posted 7/9/2018 9:08 PM (GMT 0)
Hi all,

The last time I saw my Onc I told him about numbness and tingling in my toes and hand.

He said it wasn't his area. Whatever that means.

I might be wrong as I am frequently, but as I didn't have these symptoms before treatment for PCa, I attributed this tingling and numbness to treatment as apparently it is a SE of HT.

But are symptoms caused by treatment or for that matter the cancer the concern of the Oncologist?

I am not bashing him, as if it's not his responsibility I will simply go to my PCP.
Posted 7/9/2018 9:16 PM (GMT 0)
If you have had chemo, it is a well-known SE and it is certainly his area. If not, it may be the result of diabetes, CV disease, or some neurological disorder. These things crop up as we age. You may want to see a neurologist.
Posted 7/9/2018 9:35 PM (GMT 0)
At the least you should have been referred to a neurologist or other doc who could evaluate.

I had numbness in my toes after RT. Turns out I needed arch supports in my shoes - not related to PC.

Are you sure the numbness is caused by treatment?

You PCP can help you figure out which kind of doc you need to see.
Andrew
Posted 7/9/2018 9:39 PM (GMT 0)
Don't have diabetes, nor am I pre-diabetic and I have not had chemo.
And it didn't show up until started taking Eligard.

"numbness or tingling of the hands or feet"

Is listed, albeit a rare side effect of both Lupron and Eligard.

CV disease, if so it hasn't been diagnosed.

I guess I'm asking, shouldn't someone's Onco talk about it as it is a possible side effect.

I'm just disappointed that I got blown off so easily.
Posted 7/9/2018 9:45 PM (GMT 0)
It is disappointing that a doctor who prescribes a drug, is unwilling to discuss it's side effects or help manage those side effects. I'm assuming that your oncologist is administering the Lupron and Eligard.

A doctor who gives a drug should discuss side effects and help manage them - at the least, make a referral to the specialist who can help.

Yes, your Onco could have been more helpful.
Andrew
Posted 7/9/2018 10:06 PM (GMT 0)
It is a rare side effect of Lupron, but a common side effect of a lot of other ailments. You should eliminate the more probable causes first. Just because it began soon after ADT, does not mean it was caused by it.
Posted 7/10/2018 1:55 AM (GMT 0)
FWIW, my SIL developed neuropathy after chemo (similar regimen to what most have here for PCa) and her MO pretty much dismissed treating it or even counseling her about it. OTOH, I know other guys that have chemo for PCa and their MOs actively worked to try and prevent it (ice gloves and ice boots), so I think there's certainly a varied response in how MOs deal with it. In my opinion, it certainly should be something the MO attempts to treat, rather than just thinking of it as collateral damage from the chemo...
Posted 7/10/2018 4:22 AM (GMT 0)
Like Tall said, it is a rare side effect of hormone therapy but it is a frequent side effect of other conditions that are more common. It may or may not be a side effect of something your oncologist did but even if it is that doesn't make him the best doctor to treat the problem, or even to evaluate it.
Posted 7/10/2018 1:00 PM (GMT 0)
Again, shouldn't he at least queried me a little bit???

Didn't even say well check that out with your PCP. Nope, just "I don't think that's my area."

As for other causes, that may well be, but the ones TA listed I don't have. And the numbness and tingling all started when I started Eligard last year.

I guess my problem is that I'm an I/T guy for the last thirty years. We in general look at system problems and then question any recent changes as they are generally (not all) causative.
Posted 7/10/2018 3:01 PM (GMT 0)
Same for me - I've had tingling / tightness / pain in my hands and feet - just behind the knuckle from about two weeks after my first Lupron shot.

Neuropathy of the hands and feet is a documented, if uncommon side effect of Lupron, and I would suspect Eligard as well.

MO looked at me and shrugged - "that's not very common" end of discussion. It sucks, but I guess I just have to suck it up and live with it for another 18 months or so (I'm 6 months into 18 months of Lupron).

Rob
Posted 7/10/2018 5:30 PM (GMT 0)

alephnull said...

....
I guess my problem is that I'm an I/T guy for the last thirty years. We in general look at system problems and then question any recent changes as they are generally (not all) causative.

I was in that business as well, since 1967. We were generalists with specific skills because of the way IT evolved. If things went off the rails, we suffered as well. Different world, different mindset.

My Onco has told me in a straightforward manner that he does not / will not deal with a number of SEs that are borderline as to potential cause. Reason is that his practice does not treat those things (even if they find them), and will not because of their medical malpractice insurance policies. He sends me back to the GP, which is fine with me. They are both good at what they do. I live with it. It is the world we live in.
Posted 7/11/2018 1:19 PM (GMT 0)

142 said...

alephnull said...

....
I guess my problem is that I'm an I/T guy for the last thirty years. We in general look at system problems and then question any recent changes as they are generally (not all) causative.

I was in that business as well, since 1967. We were generalists with specific skills because of the way IT evolved. If things went off the rails, we suffered as well.....


Small world, I was a salaried staff guy in AT&T corporate IT for most of my career. As a generalist I wasn't an endangered species due to technology changes.

Anyway, I recently had an appointment with a VA neurologist about my low back pain and when he was evaluating me he discovered my left leg didn't have the strength of my right leg (I was also complaining about not picking up my feet when walking). He said I had neuropathy in my left leg due to a spinal disc pushing in the spinal cord sheath. I think he was ready to consider surgery but I'm not letting anybody near my back with any kind of surgical instrument until things are really bad.
Posted 7/14/2018 4:25 AM (GMT 0)

alephnull said...
Don't have diabetes, nor am I pre-diabetic and I have not had chemo.
And it didn't show up until started taking Eligard.

"numbness or tingling of the hands or feet"

Is listed, albeit a rare side effect of both Lupron and Eligard.

CV disease, if so it hasn't been diagnosed.

I guess I'm asking, shouldn't someone's Onco talk about it as it is a possible side effect.

I'm just disappointed that I got blown off so easily.

Should he discuss it(possible SEs of his treatments) with you and give you some ideas or referrals? HECK YES!
Posted 7/14/2018 2:37 PM (GMT 0)
Aleph, I would feel the same way. From what you say, it sounds like a total blowoff, and it would make me feel,like I’m just a number to my onc, wh9ch isn’t a great feeling.

But if you are confident in his ability to treat, not much you can do but just move on. I wouldn’t bother with a pcp on this unless you need a referral for insurance. I’d just go straight to a neurologist. Maybe ask the onc for a referral to one.
Posted 7/14/2018 4:36 PM (GMT 0)
alephnull

I got numbness in my hands and feet after chemo. It got real bad about 8 months after chemo in my right hand. I was told to see my Family Doctor who got me into a neurologist. I did feel like I was being blown off at that time. The Neurologist found some of my numbness is from the chemo, but right hand is from a severe case of Carpal Tunnel. Who knew I am retired and did not expect that, well i have taken a steroid shot for now and will get a surgeon to repair my hand shortly.
Posted 7/14/2018 5:39 PM (GMT 0)
I have neuropathy in hands and feet which started during chemo. Also have ringing in my left ear . When I mentioned it to my MO he looked at me and said "ya....sorry about that". I just looked at him for a second and thought "wow...is that it" then I let it go. I initially thought he was just blowing me off then figured that it was something that comes with the territory of having chemo, much like the SE's from all the other treatments I was having. I like my MO and trust him and if there was anything he thought could be done then he would have said something more.

The fact is.....I realize that I have made the choice to have these very extreme and harsh treatments in order to hopefully cure or at least hold off cancer. I knew going in that things were not going to be easy and that there are things in my life that just aren't going to be the same anymore. I realize that there are many different SE's that can come with any one of these treatments and that not everyone experiences the same one's. I could list numerous SE's that I have that most others don't have.

Every Dr. is also different and some have very good bed side manner and others don't. Some give lots of info ....others don't. That is why I do my research and why I come here.... for others experience in order to help me through this process.


Cancer treatment sucks...I will have things that will effect me probably for the rest of my life. I hope that some will eventually fade and get better, maybe they won't.
I will do everything that I can to fight this beast off.....with my Dx, it will kill me if I don't. That also means that there are times I get tired of having these things to deal with and sometimes I have to vent or get them off my chest.(another reason I come here)


Alph, I know how you feel. It sucks when a doc seems to just blow you off. I have had to go to other specialist for some of my SE's. Other SE's ...I just deal with. Just another part of what we have to deal with in this battle I guesss.....


Battle On Brothers!
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