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What to expect

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

I’m hoping you can share with me what to expect. My husband had esophageal cancer last year. Which he had removed and has been doing very well. But, he had low potassium that they have been trying to diagnose. In an effort to find the cause of the low potassium they did a CT with contrast to look at his adrenal gland. The doctor called and said they found two spots on his kidneys (one on each kidney) and one on his adrenal gland. The doctor did not seem as concerned about the spot on the adrenal gland as the spots on his kidneys. The largest is just 2 x 2 cm, the other is 1.5 x 2 or so. His is getting a referral to an urologist next week. My question is how do they determine if it is malignant or benign? His scan report said it could be either. What could we expect to find out at the first appointment? We are taking the doctor both scans he has had in the past month and half. The first one was a CT/PET without contrast (a year post surgery check for the EC cancer) and nothing was found.

Thank you for your input.

icemantoo's picture
icemantoo
Posts: 1629
Joined: Jan 2010

Birdequeen,

You would think after what your husband went thru that he had enough already. As for the spots on the kidneys at 2cm and 1.5 cm they are on the much smaller side of what most of us here have faced. The problem is that he has it on both kidneys. Over the last few years thay have developed both a cyro technique and a radio frequency technique to zap these little buggars. Hopefully that will do the trick. The next step is a partial nephrectomy (partial removal of the kidney). I for one had a full nephrectomy 9 and 1/2 years ago for a 4.2 cm tumor and am doing fine. As for whether they are benign or not most of these little buggars on the kidney either are cancerous or will become cancerous once they reach 2 cm or so. So what. The good part of the procedures and surgery I was speaking of is that they get rid of the Cancer. No treatments. No Chemo. No Medicine. As for the spot on the adrenal gland Kidney Cancer does not usually spread there unless you are dealing with larger tumors. So I hope your doctor is right that that spot is not a concern. If we were only concerned with a single 2cm tumor confined to the kidney, the cure rate is close to 100%. Keep us posted. We are here to support you.

Best wishes,

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

What a rapid and helpful reply iceman - you sure make it your business to stay on top of things and keep up-to-date!

Bq, if your husband is in his forties or early fifties I agree with iceman that he's not been too lucky except that the kidney lesions have been spotted earlier than usually happens which greatly improves his chances of a complete cure. We'll all be hoping the story turns out well and will be interested to learn what the experts advise.

You're already aware of the point iceman makes about recent progress and thank you so much for flagging up the staggering story of the amazing Angela Zhang. It's so wonderful that I'm sure everyone on this thread also will be glad to see it:

http://www.cbsnews.com/8301-18563_162-57358994/calif-hs-student-devises-possible-cancer-cure/?tag=pop;stories

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

TW,

TW is for Texas_Wedge and not tiger woods...right?

Next expert meeting is Thursday evening. I will give an update after we know more.

I have always believed that a cure will be found for all cancers. It just can't happen soon enough! That would give lots of us the opportunity to shoot our age or better :). I need to get a bit older to do that on 18 but I got it down for 9.....hahaha.

Thanks for welcoming a "caregiver" on your thread.

Take Care,
Lee Ann

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Icemantoo,

Thank you so much for sharing your knowledge. I was going cross eyed reading all the web sites. Yes, he has had enough already. The cyro and radio frequency sound promising. I read some of the surgery recovery post here and I'm sure that is not something he is ready to go through (again this year) but if there is a cure rate that high, I'm sure he will find the courage. Of course that would apply only if this is not Mets of his EC, neither of us are ready to face that. EC does spread to kidneys but typically not first and there have been a few cases of it spreading to the adrenal gland, but not often. Either way it would be a pretty unusual place for it to show up next. So as strange as it may sound I guess we are hoping it is RCC. That would give him the best chance at survival. Again thank you for your input. Its nice to hear from someone that has been there.

Lee Ann

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Icemantoo,

Can you elaborate on "the problem is that he has it on both kidneys"? How might that complicate things?

Thursday, when he goes to the urologist, can not get here soon enough.

Thank you again,
Lee Ann

icemantoo's picture
icemantoo
Posts: 1629
Joined: Jan 2010

Lee Ann,

I am not a Doctor. Only a RCC survivor. I feel uncomfortable trying to answer a question that does not bear on my own personal experience. With that caveat here goes. Most of us have 2 kidneys and can live with one. The traditional cure for Kidney Cancer is a Nephrectomy or partial Nepherectomy. Obviously the option of removing both kidneys is not on the table. Nor as I understand will they tackle the problems with more than one kidney at a time. Better to have a 4 cm tumor on one kidney. Sorry I can not sugar coat this answer any better. Hopefully the Urologist can.

Best wishes'

Icemantoo

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Thank you, I did not mean to put you in an uncomfortable place. No worries, I understand all replies here are from survivors and not doctors. No need to sugar coat for me either. I have always lived by the saying....expect the worst, pray for the best and nothing in between will surprise you! I think I have been subconcesly preparing myself for the worst and praying like crazy.

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

I was thinking the same thing. The fact that the spots are on both kidneys and still very small makes your husband a great candidate for cryoablation -- where they just freeze-kill the suckers. That way, both kidneys are spared as much as possible. That's the whole idea behind cryoablation--it doesn't diminish the kidney. But it will all depend on the location of the tumors.

My tumor was just over 2 cm by the time we cryoablated it. And while for unrelated reasons I had to have open surgery to do it, most cryoablation is done laproscopically, which means an easier recovery. If you find your way to a big teaching hospital, this is very do-able.

But what you can expect first is probably another ct scan, this time with contrast. Kidney tumors do not biopsy reliably, and since most spots are cancerous, they go ahead and treat them as if they are cancerous, unless the ct scan shows it has significantly shrunk in size, suggesting it was probably a cyst or something else benign.

With lesions this small, the treatment for this is likely to be a thousand times easier than treating the EC.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Thank you Jamie. Hope you are doing well now after your surgery.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

birdiequeen,

There is a thread here titled Bilateral RCC that was started by growler9, just thought it might be of interest to you.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Seems the fact that it is in both kidneys, is the problem. They are going to do a biopsy to see, first if it is cancer and second, which type of cancer it is. Given his history with esophageal cancer, it may be a re-occurrence, which would be the worst case scenario here. So we are waiting, again.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

The biopsy was inconclusive. They did say it was not related to his Esophageal Cancer, so that is fantastic news. He will be having another biopsy, if the insurance will approve the specific Dr. he wants to do the second biopsy. So we are in a wait and see mode again, but much relieved to here it is not re-occurrence. Thank you for your support. It's nice to have a place to go and read others experiences.

icemantoo's picture
icemantoo
Posts: 1629
Joined: Jan 2010

birdeiqueen,

You and your husband have my support during this journey. Hopefuly these issues can be resolved in a favorable way.

Best wishes,

icemantoo

rae_rae's picture
rae_rae
Posts: 273
Joined: Oct 2010

Glad it was not a recurrence. Keep us posted- we are all here for you!

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

Good Luck Birdie Queen to you and your husband. We have a lot of that that we share around here.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

New Biopsy this Thursday.

Thanks for the support!

Fishknees
Posts: 73
Joined: Mar 2012

I hope everything turns out well today. Please keep us posted.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

They did a frozen section and ran it up to path. First attempt was non-diagnostic (scar tissue). They gave him contrast then Dr repositioned and took three more samples. He then put an air bobble at the spot where he took the samples, rescanned and he said it was right in the middle of the mass. He feels confident he got a good sample. But if not I know he tried very hard and it may not be possible due to the small size. Hopefully we will know something by Tuesday next week. If it was not for his previous cancer, I don’t think we would be doing a biopsy, he would just do the surgery.

Thank you for your inquiry. Fishknees, I know you are concerned about your upcoming surgery. I have not had cancer and don’t know your fear but try not to waste time on fear, it robs you of the here and now. Educate yourself, make informed decisions then turn the rest over to faith. Learning to let go of what is impossible for me to control has been the most important lesson I have learned from my husband’s cancer. I sleep much better now because of it, which helps me make better decisions on the things in my control.

Fishknees
Posts: 73
Joined: Mar 2012

Birdie:
Thank you for the advice about not having fear. If I could change it I would; but, I just can't. I have tried everything. Medical area is my weak spot. Otherwise I am not fearful of anything. At 62 I think I am not going to change. I never let go of all the control because I always feel there is something I can do.

I hope you have a good outcome with his diagnostic procedure. At least you will know tomorrow.

Sorry I did not see this post sooner. Thank you for thinking of me.

I pray that his outcome is a good one.

Have a great day!
Fishie

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Finally we have results. It is RCC, low grade, clear cell. Really the best we could have hoped for. They are looking at doing an open partial. After the first biopsy they said it was not related to his esophageal cancer but neither of us felt good about that since they couldn't say what it was. But now it appears to be RCC, so instead of a 3% survival rate it’s more like 98% to 100%. Granted you have to wonder why two different types of cancer in less than two years? Not out of the woods yet but much relieved. We have a few conflicts to deal with. The doctor we are seeing doesn’t do surgeries where our insurance coverage is. So we'll will have to work to get that approved. Plus my husband has used up most of his sick leave with his surgery last year. But both those are manageable.

icemantoo's picture
icemantoo
Posts: 1629
Joined: Jan 2010

birdequeen,

Given your husband's journey so far it is nice to hear that a diagnosis of RCC is good news in relation to what it could have been. The surgery should be a piece of cake after what he has gone thru.

Those of us in or about to become members of our club should realize that as bad as hearing the words RCC there are a lot worse things that could happen and we should be thankful that having a curable case of RCC is what many others wish is all they had.

Keep lifes' blessings in perspective.

Icemantoo

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Tomorrow is the first open partial. Keeping my hopes high that it will be a piece of cake compared to what he has been thru. Not sure I'm ready but here we go.

icemantoo's picture
icemantoo
Posts: 1629
Joined: Jan 2010

birdiequeen,

Things should go well today. An open partial, while routine is still major surgery and there will be some downtime. Let us here from you after a few days.

Icemantoo

matchframe
Posts: 58
Joined: May 2012

I had an open partial last September. The recovery is a little slow, but well worth it. I was in the hospital for 5 days and off of work for six weeks.

I will be praying all goes well!!

Bill

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Surgery went well, no complications so far, will keep our fingers crossed that continues. Thank you for your replies, it helps to know there are people who have walked this path before and understand.

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

Yea! BQ!!!!!

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