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An Update Following My Adrenalectomy

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Hi. Sorry I've been away without stopping by for a few weeks. I started back to work yesterday after 7 weeks of disability after my adrenalectomy. I can't recall if I checked in to say my adrenal tumor tested positive as RCC, but it did. I've just been trying not to make cancer the center of my life.

I had a hard time healing from the adrenalectomy. There were 7 incisions. I had an allergic reaction to the surgical glue used to hold the outer skin together. This glue got in the wounds. I had swelling, itching and redness for weeks and it seemed to drastically slow the healing time. I still have one wound that is open, and a few others that aren't 100% healed.

Yesterday I went in for follow-up baseline scans, a CT and an MRI with contrast of my brain. Very odd. The MRI contrast caused my incision sites to all flare up. They turned red, got swollen, and very itchy. The nurse called the radiologist to come have a look and he said it appeared I was having an allergic reaction to the gadolinium. They said it wasn't life threatening and the radiologist thought this shouldn't keep me from having the contrast again in the future. In fact, it cleared up over the next few hours.  I'll have the results of the scans tomorrow when I see my oncologist. I'm hoping for NED again.

My oncologist is wanting me to do another 50/50 trial. It's placebo vs pazopanib after a resection of RCC. I've decided not to do this study, but the oncologist is pushing me a little. I'll find out tomorrow. My thinking is if the placebo vs sunitinib vs sorafenib adjuvant trial showed no results, I can't imagine why pazopanib would work in an adjuvant setting. His pushiness I find a little uncomfortable. I think drug trials should be a volunteer thing and a patient should have the decision squarely in their hands. If he's very pushy with it, I'm planning to seek a second opinion. I'm probably going to be looking for a second opinion anyways. I'm not 100% comfortable with my relationship with my doctor. I may be extra sensitive or critical, still I'd rather feel really good about my choice.

Everything is going fairly well. I'm doing my best to stay up beat. I'm worried about going to work. I tire easily and I'm battling a nausea that is there much of the time. The docs tell me that nausea can be caused by 1000 things and it can be hard to pin down without other symptoms. I've actually been having this ever since my nephrectomy 2 1/2 years ago, but it seems to be worse and more persistent recently.

Missed seeing you all. I'll have to see if I can catch up on reading to see how everyone is doing.

Best wishes,

Todd

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

But I think you should stop getting allergic to stuff! Good luck going back to work

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Wow! Todd~You have been through a lot.

Sorry for all you have been going through.

Yes, WE missed you!!

So.. I am sending you a nice warm, HUG!!!!!!!

Warmly, Jan

 

Allochka's picture
Allochka
Posts: 870
Joined: Nov 2014

you've had a hard work to recovery... If wound is not healing, can they put some kind of staples into it to help it heal?

Hold on and let us know your tomorrow's results!

 

APny's picture
APny
Posts: 1948
Joined: Mar 2014

Hoping your brain scans come back clear. Also that the nausea subsides. As for your doctor, if you're not comfortable with him definintely look into another one. No, you shouldn't be pushed into drug trials; it should be your decision. Discussing it with an impartial third person would probably help you make the decision. Wishing you teh very best.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Todd,

I am so sorry that you have had quite a bit to deal with. Glad to see your post though! We DID miss you! I hope that you feel better soon. I wonder if it is your body reacting to healing from the surgery.

Hoping that you get some good feed back about meds, so that you can make the best decision.

Hugs,

Jojo

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Another challenge, huh, Todd? It starts to get old but it is also the way some of us live. I like your thoughts on the trial. I think you know enough to choose what is right for you. Don't let them push you. Is their motivation the study or you?

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

The doc did mention this was "his" study. I'm getting a second opinion from an independent oncologist (RCC specialist also) on Monday.

I really doubt taking pazopanib now will help me based on the sorafenib/sunitinib/placebo adjuvant trial that was just released. I have no plans to take this drug for a year with this evidence in hand.

Thanks Fox. Glad to see you posting again regularly.

Todd

I am alive
Posts: 316
Joined: Jul 2012

If you don't feel 100% comfortable with your doc, go get another opinion. We have to feel good about our oncs - there are too many other things going on in our lives to worry about. A second opinion - or even a third -  might make you feel more comfortable with your original doc and his/her advice. Bottom line: can't hurt.

As for returning to work, you might like getting back into the swing of things, nausea and other side effects be damned.  Hope that's the case, anyway. You've been thru enough crapola. Sending you warm wishes & a hug.

jason.2835
Posts: 337
Joined: Nov 2014

Todd,

Very strange; I also had a reaction to the glue this time though I did not the first time...  I saw my cancer doc after I had the cholecystectomy but before I had the follow up for the second surgery and the lap sites were red, itchy, swollen.  He was surprised because not only did I have both surgeries at the same hospital but both surgeons work in the same OR area.  

He likened it something like poison ivy; it gets worse each time. They also used these big, thick white strips that covered the open incision and there was a reaction to the glue on those (they took those off before I left the hospital).  So that could have been what activated the allergy.  

Who knows.  Allergies are weird.  I do have sensitive skin, but the first surgery I literally had zero problems with allergic reactions.  This time, I have rashes, redness... It's almost 3 weeks and it's finally starting to calm down, though.  Going back to work Monday.  Going to take it REAL slow.  I might be crazy but there is no short term disability here in PA so I need the money...

Hope your scans all reveal NED.

- Jay  

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

My scans were all good. No brain mets. No others.

Still left the office feeling dirty. The oncologist is pushing "his" study talking about how high risk I am. He practically said he's going to be seeing me in the next couple of years with mets and they are very unlikely to be operable this next time, and this is my only chance.

He quoted me a 2/3 probability of recurrence at 3 years and said the next mets are "very unlikely" to be operable.

This has me bummed out a little. He didn't say "get your things in order", but it seriously has me questioning whether I want to be working or not. I can afford to live 5 years maybe without working. Maybe even 10 if I'm careful. But beyond that, I'd have to go back to work and I'd be broke/no retirement.

So it's really hard to decide what to do.

Thanks everyone for your supportive posts. I really appreciate it.

Todd

jason.2835
Posts: 337
Joined: Nov 2014

Todd,

I think me and you are very similar in our beliefs about doctors.  Doctors have to be on your side.  Period.  He doesn't have a crystal ball any more than you do.  To tell you stuff like that is just embarrassing to the profession.  He's pushing you to do the trial, but what if you get placebo?  So how exactly would that help you?  I don't know; I have to admit I'm embarrasingly under-educated with regards to trials.

Bummed you out a little?  Ya think?!?  The hardest thing about this battle, for ALL OF US, is the fear that it will someday return.  I would NEVER want my doctor to lie to me or pour honey in my ear.  I want him to be straight with me regarding my chances.  Thankfully he is optimistic.  But your doctor, sorry for the language, is an A$$HOLE.  I'm no doctor, but from what I've read the ONE hallmark that you CAN hang your hat on with RCC is that it's UNPREDICTABLE.  How the hell does HE know whether mets that show up in THREE YEARS are going to be inoperable?!?  Maybe his real name is Doctor Emmett Brown and his car is a Delorean and travels through time.  Maybe you should ask him if he's visited the future and he's just here to warn you and guide you to the right path.  If a kid on a hoverboard shows up....  I mean, REALLY.  

In your case, you are NED at the moment.  You have no cancer.  He doesn't know what's going to happen any more than you do.  I highly recommend that you return to your life at your earliest opportunity.  If you love what you do in your job, go back to it.  LIVE.  

All that being said, with the trial, I think you need to throw out his recommendation and think about it pragmatically.  What would it hurt TO do the trial?  Are there crappy side effects?  If the benefits of DOING the trial outweigh the negatives, then screw what he says, do it.  However, if you don't think it's right for you, don't.  Just don't be bullied into it by Doc Brown.

- Jay  

a_oaklee
Posts: 440
Joined: Nov 2013

HI Todd.  Glad to hear that you are finally out and about and on the mend.  Its too bad that your oncologist is saying those things to you.  He doesn't know anymore than you know the future.  Maybe it is time to find a new oncologist.  So I wanted to write to you about the nausea.  I can't believe it that for 3 years my husband had fatigue and nausea, and finally the oncologist says we should check your cortisol levels.  Because he only has one adrenal gland it could be low, and the symptoms would be nausea and fatigue.  Well, his level was low, and now has a prescription.  he still has fatigue, but no more nausea!   What about you?  have you had a blood test to check the hormone levels?  

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Hi. Thanks. No. They haven't checked hormone levels. I was trying to find an endocrinologist for a checkup. The ones around me are very busy with diabetic patients. I had trouble getting in. I'll try again. You might think it would be standard to check that after removing an adrenal gland? I'll get it checked. I've had an inguinal hernia before and I know they can come back even after surgery. I need to check that as well. Nausea is the worst symptom for me. 

Thanks and best wishes. 

Todd

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

I'm very happy for your CT result. Congratulations and may you be NED in all future CT reports. I had nausea occasionally for almost four years, it was terrible feeling, all blood works and other tests were perfect so none of medicine team took it seriously. it got worse in last couple of months before the diagnosis and made me feel miserable, right after the surgery it ended, since almost 7 months ago i'm lucky not to have it anymore. I hope you feel better and it turns out to be nothing important. How could an oncologist know when and what type of met a patient will have? as far as I know they really don't know that much, wish they did, because that would help patients but they DON'T KNOW.

Forough

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

He's very pleasant and smiles a lot. But seems to expect the worst. 

I'm seeing another on Monday. They both do research on rcc. Both specialize in kidney cancer. 

Thanks.  Best to you. 

Todd

APny's picture
APny
Posts: 1948
Joined: Mar 2014

I'm glad you're seeing another oncologist. This way you'll get completely unbiased opinion and/or advice. The doc doing the clinical trial is not going to be able to remain unbiased even if he tried. And I agree with everyone; unless he has a crystal ball he can't say when you'll get mets and whether they'll be operable or not.

Allochka's picture
Allochka
Posts: 870
Joined: Nov 2014

Glad to hear about good scans! And abouts doctor's negativism - this is the worst thing you can face in your treatment. Doctor must be realistic, but never negative. He could have told you - "ok, probability of recurrence is rather high, but we will deal with it. You must go on living normal life".  

I've read an article once about hematologist doctor my mom knows. This hematologist appeared to be a really great specialist, treating lymphomas, leukemias, serious stuff. The article quoted an interview with her patient, who had stage 4 lymphoma and some docs told him he is doomed. The hematologist I'm talking about, my mom's friend, on the contrary has told this guy " I WILL get you cured, will you help me with this?" He believed her and is now in remission for several years! 

Doctors are those who frame our attitude, because we trust their knowledge. They inspire us to fight or give up. Let's choose those who make us fight and win!

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Your oncologist isn't just pushing you a little...he is pushing you A LOT! And using scare tactics. I find this highly unprofessional. I am very curious to see what the other oncologist says.

Todd, what this doctor has told you has you thinking about quitting work, changing your life....just because he is pushing for this study.  Tread carefully, and don't take everything to heart. This guy is sketchy.

Please keep us posted!

Hugs

Jojo

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