posted on October 11, 2000 10:04:48 PM new
I'm wondering if anyone has any insight into this particular cancer. Last week my husband went to the doctor with what, he thought, might be a kidney stone. A zillion tests and cat scans later we find out he has what they call kidney cancer in layman's terms. He has a hard ball size tumor in his left kidney, spots too deep into his liver for them to check during surgery, and also spots on his bladder which will be checked out the 17th when he goes in for surgery to have his kidney removed. Doctor doesn't seems real positive to me, and isn't sharing information easily. It's like I have to drag answers out of him, and then he looks at my husband and says "she's asking these questions, do you really want to know?" I'm really frightened right now. If anyone has experience with this can you share?
Thanks,
Kate
posted on October 11, 2000 10:21:01 PM newKtsclutter I'm very sorry to hear that you're going through this.
I'd like to share something with you but would prefer to by private email.
If you would email me please I'll respond. I don't mean to make you uncomfortable if you'd rather not - I'm just not comfortable myself sharing this information on a public board. You can reach me through my auctionwatch email address.
posted on October 11, 2000 10:34:21 PM newktsclutter: I'm so sorry to hear about your husband. Have no personal experience, but here are two sites that may be of help to you:
posted on October 12, 2000 12:18:40 AM newkrs: while no personal experience with this particular cancer, I did go through lung (& brain cancer) with my mother. I had no intentions of frightening her "unnecessarily" or otherwise, but I did learn from my own experience that full knowledge in the case of cancer allows a person to deal with it better than just blindly accepting the fact of its existence. And, actually, the sites I gave do state that if caught before it metastisizes this form of cancer has a good recovery rate.
ktsclutter: I am sorry if I, as KRS intimates, frightened you more than you already are. But please don't just let the doctor get away with not giving you all the information on your husband's illness that you want to have. Find out the various treatments there are for it. Ask why & why not things are being done a certain way. Doctors are not gods. Ask for second opinions, too. And try looking for message boards or chat rooms on the Net where you can speak to others who are going through what you are now. Arm yourself with knowledge
posted on October 12, 2000 12:42:45 AM new
OK, but those sites are so general that they really offer little except a sense of how overwhelming the thing can be.
ktsclutter,
From the sound of it the doctors are not giving much because they don't yet know much.
Think of them as mechanics who have to take time to diagnose your car before they can tell you what it needs.
Go armed with every bit of information you can find. The net is chock full of the latest stuff on about anything medical, and you can know the newest things before your doctors get it in the mail. You can't ask informed questions unless you are informed.
posted on October 12, 2000 05:52:16 AM new
{{{{{Kate}}}}} (Gentle, supportive hugs being sent your way.) Such heartbreaking news. The next few months are going to be very difficult for all of you. I agree that you need to get all the support and information you can.
When you said you ask the questions, but the doctor asks your husband if HE wants the answers, I think that's very common. A lot of doctors only answer the patients questions as they are asked, not giving full information up front. Some feel when the patient is ready to grasp the answers, the questions will be asked. Maybe his/her concern is that since it's you asking the questions, your husband may not yet be ready for the answers. Having scheduled OBGYN oncology surgerys, I've seen it a lot. It always amazed me what the patients didn't hear the doctor say. They're just in shock, and sometimes it's too much for the brain to comprehend all at once.
Discuss with your husband, whether or not he is ready to hear exactly what the prognosis is. If he is ready to hear all the answers, then inform the doctor of that. I'd bet he'll be more willing to share his knowledge of your husbands case.
I totally agree with Bunnicula, that you should always ask questions, and get a second opinion. The answers you will receive (through researching, asking questions, having as much knowledge as possible) will be needed to make decisions about your husbands treatment.
Like a lot of others, cancer has touched my family. My mother (cancer of the color which metastised) and my younger sister (bone cancer - leg amputation - alive 30 years later). Even though people here may not be familiar with this particular type of cancer, we have been though the terrifying cancer experience and our hearts go out to you and yours.
Stay hopeful and optimistic, but be informed. Please feel free to email me too, if you want to talk. [email protected]
[ edited by Linda_K on Oct 12, 2000 05:56 AM ]
[ edited by Linda_K on Oct 12, 2000 06:06 AM ]
posted on October 12, 2000 06:36:19 AM newktsclutter, my thoughts and prayers go out to you as you face this difficult trial.
I would suggest if you feel this doctor is "hedging" or not being as forth coming with information as you need, that you find a good Oncologist and get not only a second opinion, but a doctor who will include you both in the decision making process. A patient actually needs a person to be his or her "go-between", the one who gathers the info and does the foot work, so the patient can use their time taking care of themselves. A good doctor will work with a spouse, not against them, especially if the actual patient has made it clear they want to know all there is to know.
Do you live near any large University type hospitals such as The Cleveland Clinic or the like? I would also strongly recommend attempting to see a doctor from a hospital like that. There are many specilizations now in medicine, and there are probably Oncologists who specialize in this type of cancer.
You need to be very pro-active in fighting this disease, and to do that, you need information and lots of it.
posted on October 12, 2000 08:22:52 AM new
ktsclutter: Here is a page with descriptions of the stages and accepted treatment options depending on the stage. Hope this helps answer some questions.
posted on October 12, 2000 08:50:14 AM newKts Since I haven't heard from you via email (and I do understand if you're reluctant to do so) I just want to reiterate what everyone else has said above.
I personally know many survivors of cancer and one of the keys is in arming yourself with as much information as possible and making the doctors accountable for every action they do (or don't) take. This is just as or more so important before the surgery. Make sure that they have given your husband every test possible to isolate where the cancer is and how they plan to remove it before they begin the surgery. I also think that it's best if you have a third party available to help you clarify things with the doctor. I would even recommend bringing a notebook with you to take notes during any meeting. We've been trained to fear cancer and sometimes get shocky when discussing it, especially when it relates to someone we love. Just realize that there are always new treatment options becoming available and your doctor may or may not be aware of all of them.
You'll need to be stronger than you've ever been and this is the time to lean on and gain strength from friends.
posted on October 12, 2000 09:48:47 AM new
Kts - Both you and your husband will definitely be in my prayers. Having been through one of hubby's family members having a rare type of cancer, I agree with Meya.
Don't just accept that the doctor knows everything that is best for you and your husband, only he and you can make that decision. Look for an onocology specialist and definitely ask for a second opinion, before surgery is done if possible.
Your doctor should be willing to refer you to one if you ask him/her about this. If he/she hesitates or wants to know why you are seeking a second opinion, just tell them that your insurance company requries you to do so. You have enough to worry about right now and hurting your present doctor's feelings isn't something you should have to worry about.
Cancer can be cured if caught and treated, so there is an excellent chance this one will be cured as well.
Edited to add:
I completely forgot to tell you about this. My aunt had a kidney removed, (it was cancerous) when she was in her late 70s. She is now 82 and doing fine with no recurrence or any problems with her kidneys.
[ edited by jada on Oct 12, 2000 09:59 AM ]
posted on October 12, 2000 04:16:57 PM new
When my mother was diagnosed with renal cell carcinoma in 1974, not much was known about that particular cancer. She had her kidney removed and underwent radiation therapy.
Having her kidney removed was not like an appendectomy. It took her a few months to regain her strength. The first day she was home, my father got her up to walk and she could make it no farther than the front door. But she kept at it and slowly was able to walk farther and farther. Six months after her surgery, she was back to her normal PITA self.
For five years after the surgery, she was tested every 6 months for recurrence. There was none. She was considered cancer-free.
Thirteen years later, she fractured her hip and it was discovered she had developed bone cancer. After tests were done, it was learned that the bone cancer was, in fact, a recurrence of the renal cell carcinoma. Her oncologist said at that time that they were learning this was not unusual for renal cell carcinoma, that the patient would test cancer-free for years and then suddenly have a recurrence many years later. The docs had no idea why this cancer worked that way.
Anyway, the cancer was terminal and she passed away 18 months after the diagnosis.
I'm not telling you this to frighten you. My mother's cancer was 12 years ago. A lot of advances have been made in treatments since then. I haven't kept up on the reading so I don't know what strides have been made in renal cell carcinoma since then.
What you MUST do is make sure you have an oncologist who is current on all the treatment venues and will treat this cancer aggressively. If your husband experiences pain, his doctor needs to be willing to prescribe the medications needed to control the pain and not be worried about "addicting" your husband.
Right now, I can imagine that both of you are scared about the future. The best way to combat that fear is to become aware and active in the treatments. Read up as much as possible. Encourage your husband to ask questions and to be an active partner in his treatment. Work with the doctor and keep him informed.
Good luck.
Edited to add: And make sure you get a second opinion from another reputable oncologist. Mistakes have been known to happen.
posted on October 12, 2000 07:02:22 PM new
Bunnicula: Not to fret. Nothing can frighten me anymore than I already am. I truly appreciate the direction to sites. I've been pulling up various info myself, but nothing really seems to be any better or worse than seeing the cat scans of the tumor. It's huge in size, compared to the kidney itself. Thank you for your words.
Mybiddness: I have tried to email you, but do not know if it went through or not. It was my frist time trying to send an email via AW. Thank you for your offer. I'll await your reply, and if I don't hear from you I'll send you another one from home.
Dear, sweet KRS: You are a protector, a knight - with the most incredible knowledge and articulation. I am your #1 fan. Your words from the Hanoi Jane thread still haunt me. My heart went out to you and I had no words to respond to your thank you. Thank you for your direction and words.
Linda_K, Muriel, Snowyegret & Meya, Spaz, Jada, Mauimoods & Shadowcat. Thank you so much for the hugs, prayers, insights and for sharing your own experiences. I suppose I have been blessed in life because cancer has not touched our family until now. I am ignorant of anything other than the Cystic Fibrosis that took our oldest boy three years ago. I've been overwhelmed with this as it happened so very fast. It's time I buck up, fill myself with the knowledge you all suggest and face the doctor for some truths. Hubby is being seen by one of the top kidney cancer doctors in our area at a very good hospital. He is our second opinion. The first hospital scheduled him for surgery after only seeing a nurse practitioner. Told us the doctor would discuss the "procedure" before surgery. Didn't take but a heart beat for us to beat feet out of there!
Our family is so spread out and far from each other anymore, there is no reaching out to get a hug. There are certainly some draw backs to being a mobile society. I hope my desperation in seeking some solace wasn't out of place on this board. If it was, I am sorry. Thank you again.
posted on October 12, 2000 07:27:08 PM new
Kts - Seeking solace is never out of place. As far as I'm concerned, that is one of the most valuable aspects of this type of board.
Yell anytime you want, there are a lot of good people on this board who are more than willing to help. (I may not be much good at it, but I'm willing to try).
posted on October 12, 2000 08:01:13 PM newKts I just received and replied to your email. I'm still trying to figure out AW email too.
Just wanted to add that I think you should post here or anywhere that might be of help. You never know when a person reading this board or another might have a really valuable insight that you haven't found anywhere else. The AW community may bicker occasionally but they're a caring community and quick with the hugs. I've never given one yet. Not a huggy person but here ya go: {{{{Kate}}}}}. Ahhhhh. that wasn't so bad - did I do it right?
posted on October 12, 2000 08:35:50 PM newktsclutter: You speak right up!! Jada & MyBidness are correct--people here are caring...and may very well be able to provide help from their own personal experiences and words of wisdom.
posted on October 12, 2000 10:41:23 PM newktsclutter, I am so sorry you and your dear heart have to face this! It seems, at times, that strong people are tested too much. I have a copy of Love, Medicine & Miracles by Bernie S. Siegel, MD, (1986) that I will gladly mail to you if you would like to read it (rather a battered copy, I am afraid, but GOOD!). If you would like to have it, you can send an address to me through AW e-mail. Or ask for it at your library, it might help in some small way.
posted on October 13, 2000 09:41:50 AM new
kts-normally I just lurk but the subject of your post is something I know a little about. I'm 41 years old and a 4 year survivor of renal cell carcinoma. That it was diagnosed at all was a miracle since I had no symptoms. I was involved in a car accident which required I have x-rays of my back. A very astute x-ray technician saw a shadow that shouldn't have been where it was and took it upon himself to show the xray to a nephrologist buddy. The result was a phone call about 5 hours later with news that there was a suspected malignancy on my left kidney. Within 3 days I was in the hospital, preparing for surgery that would remove the kidney and tell me how advanced the cancer was. I was fortunate, there was no metastasis. For the first 2 years I had CAT and bone scans every 6 months, now yearly until I reach the 5 year mark.
If your husband was like me, he's scared to death right now. Please tell him for me that there is a very, very good chance for a complete recovery. Kidney cancer's worst enemy is early detection and treatment, which can be difficult due to the lack of symptoms early on. I'm here today because a very special young man in a hospital radiology department. I sent a thank you letter and lunch to the ER staff, it didn't come close to expressing the gratitude I felt.
Like someone said above, the surgery is pretty awful and the recovery takes a couple of months. Hopefully, like me, the surgery will be the worst he has to endure. Having a great family helps so much, as does having the opportunity to express just how scared you are.
You are both in my thoughts. If you or he have any questions, I'd be happy to answer anything I can. Good luck
I just want you to know that my thoughts are with you and when you need to vent we will be here for you.
I am sorry to read about your son. You are a brave lady. Remember that.
posted on October 13, 2000 10:11:40 PM new
I don't know a lot about this particular cancer, but just want to add a positive note-a teacher I work with had this diagnosed last year. His problem was that his other kidney didn't really work very well, so they were hesitant to remove one, but had no choice.
It did take him longer to recuperate than we expected-he's pretty ornery-but he is doing very well.
And don't start counting those 'shadows' on cat scans until you have to-many times they turn out to be just that: shadows. Our small community was horrified recently to hear through the prayer chain that a young woman's doctor had found a 'shadow' on her baby's brain, and was going to have to take the baby early. They did the caesarian the next day and discovered that it was indeed, just a shadow on a very normal ,healthy, but slightly premature baby! Deal with what you have to, today, and the rest of it when it comes up. As my grandmother used to say, God never gives us a load heavier than we can carry.
posted on October 14, 2000 06:12:17 AM new
mymissou: I am SO VERY happy to hear you have recovered!!! What wonderful news. Thank you for sharing your experience. You had an angel watching over you with that astute radiologist. And yes, my husband is very fearful right now, but is approaching this with a positive ootlook.
Joyz: I would love to read your book. Thanks for the offer. It must be a well read book with great meaning to you. I will email you.
Thanks again to each of you for your support and in sharing your experiences. I'll update after surgery Tuesday. I really do appreciate all your kind words and support.
posted on October 14, 2000 09:51:32 PM new
ktsclutter - My hopes are with you. Unfortunately (or fortunately), I have no experience with this particular type of cancer so I really can't give you any specific advice.
The one thing I would suggest is to keep searching for more information on the internet. It's truly amazing what is out there. My mother has CLL (chronic lymphocetic leukemia). I did quite a bit of research and found that a bone marrow transplant is now being used as a treatment. It's rather drastic (bone marrow transplants are difficult and expensive) but it *cures* CLL - not merely treats it. Why do I tell you about this? Because her oncologist (the best in town) told her that a bone marrow transplant doesn't work. I had to print out research papers from M.D. Anderson (big hospital in Texas) before he would admit that he was wrong. (Actually, he was grateful - said he hadn't heard about it.)
Anyway, doctors don't know everything. Do your own research. And don't give up hope.
posted on October 15, 2000 12:38:34 AM new
I feel for you, my brother was diagnosed last year with an Oligodendroglioma (brain cancer), it is a very rare form of cancer and almost nothing is known about it. I found a lot of information on it via the internet. My brother has one of the nest surgeons in the country, make sure you have a Doctor you trust and who gives you all the information you need. My brother's doctor let us know everything that was going on and is holding out hope when there really is none. I will see if I can find some of those cancer links. Check out webmd.com they may have something. Heather
posted on October 17, 2000 11:23:14 AM new
kts...sending you positive vibes for your hubby's surgery today. Oh, and a few prayers, too. They couldn't hurt.
I'm awaiting on word whether a young leukemia patient will have a favorable reaction to platelets that I donated for her last Friday. She'll be getting them today and if all goes well, I'll be donating them about every 2 weeks or as she needs them.
Regardless of the outcome today, please find a local cancer support group that you can participate in. There is a tremendous strength that comes from being with people who know exactly what you are going through.
Good Luck!
*********************
That's Flunky Gerbiltush to you!
posted on October 17, 2000 08:47:57 PM new
KTS - Sending my prayers and heaing thoughts for your hubby tonight, and you as well, and hoping you got some good news today.
