Hi, the tumor board is saying that if I take door ONE that I'd add 10 fairly pleasant years to my life. To enter this door, Have the right side of my face cut out including the bones. Wait and see if any more cancers come up, maybe 3 surgeries in a year. Then wait almost a year for a prosthetic face; be fed through a stomach stent for the rest of my life. I'd have to cut my hair off to keep the wound from being contaminated. The cancer will probably come back in about 10 year and I could have more surgery and maybe chemo. Door TWO: about 5 years-hair shaved off. Prescription creams for my face-then I'll be begging for surgery. My grandson went with me. It didn't dawn on me to ask if one surgery took care of the problem or would there be more. He told me to look at the big picture. The only time I let a doctor bully me into thinking of down the line, I was poisoned by statin and told that I'll seem OK-but my kidneys will probably fail in 5 years. I told the doctor that no one can say this or that happen in 5 or 10 years. I could out live him. Would you choose dor 1 or door 2?
Which door would you take?
- 15 Dec 2012 by meyati
- 17 December 2012
Added 15 Dec 2012:
No, it doesn't look like I'll get anything for pain. Part of my problem is that my temp runs from 96-97 when I'm healthy, and I'm really sick when I'm 98.whatever. My son has the same problem. After I get radiology, I'm kicked out of the cancer clinic, because I'm not getting the recommended cancer care. I don't know if temps go up with cancer-they did with my dad---I'll be having a suppressed immune system and doctors won't be able to tell if I'm sick because of my temp. Right now, I'm a little sick from the flu shot. My temp was 98. I said, "Oh no, it's from the flu shot."
Added 16 Dec 2012:
My brother has the same cancer. He's in Japan and is being taken care by the military. He's been told more than I have, and less than I have. We've been out of contact. We've even had some biopsies at the same time-almost the same week. He's been looking at Door ONE and Door TWO for the same length of time that I have. He thinks that Door TWO- the radiation should be less stressful on our families, and he live his last few years with the dignity that a Marine deserves. Me, I always sort of thought that I'd get shot, or a horse would roll over me in the mountains-I can live with the dignity that an old cowboy deserves. And here I was worried about depressing him. Maybe the dream of sailors and marines walking over me was for him, and the dream of being in the NM mountains with livestock was for me. I'm a Christian, he is a Buddhist.
Hello my friend. I think this is a decision only you can make.You say your kidneys may last only 5 years? Have you have a GFR done, & if so what are your numbers? Mine is only 39, but I am not giving up for any reason. So soon I may have to go on dialysis, but so what? If I do, so then I do. As long as I can still function, I don't care what they have to do to me because I have another great grandbaby on the way, & have never seen the first one that is a year old. I intend on seeing both of them by hook or by crook! I know in your situation things are different, but I agree with you on one point, you could outlive them all. Look at you on a normal day. You do more than most healthy 50 year old people do. Door # 1 means more surgery, & who knows maybe they will get it all, & even if you were happy with your other face, you could look like anyone you want too! Short hair can be very attractive too.
Have you seen Miley Cyrus lately? Well, lets not go that far, ha, but you get my gist. Not so sure how I'd feel about the feeding tube, but it's just another factor you have to take into consideration. I am assuming the 5 years means no more surgery & let nature take it course, hoping the cream will stop the cancer somewhat. You have already lived 30 some years with one of the growths, so why not another 30? Personally, I'd go for the 10, but it all comes down to what you feel & want, & like you stated, you could outlive them all! What does your famiy have to say? How do they feel. They still love you face or not you know. I'm sure they want you around a long as possible. Oh, & wigs are great! I personaly have 3 different styles from when I had my hand surgery. I knew I couldn't do my hair whilst in a cast! Getting ready to do the other one hopefuly soon so back to the wigs. You can get them very inexpensively too. Let me know, & I'll steer you in the right direction. The last thing, is have you had a second opinion? Very important! I know about the phone conference, but have you actualy seen another doctor? Sometimes you get varing opinions. Another may tell you something completely different. As I said in the beginning, the options are totally up to you. I know you well enough to now you are not ready to start counting the years or days You have to many projects to finish (and start) to be worrying about time. Whatever it is, make the best of it. Live, love & laugh. Leave the worries behind. Use the time you have to stay close in your heart & life with your family & friends. I love you, & wouldn't ever make this kind of decision for you or anyone else. This is too personal to ask us to make this decision for you. You know your limits. & you know yourself better than anyone else. Can you live with a feeding tube? Can you not cheat & try to eat the goodies which will be a no no? What does your son & grandson say? What do they think? I know already they do not want to loose you no matter what. We all start dying the moment we come out of the womb. Such is the way of the life cycle. It's not fair to ask someone (meaning your doctor) when would you prefer to die? If I were asked that, I would probably have said 20 years ago when I was a lot healthier & happier, but then I think of all I would have missed out on. You are right too, they don't know how long you have or how you will react to treatment. They just go by books & statistics, & your age right now. You have proved them wrong before, & I believe in my heart, that you will again. I haven't answered your question, & wouldn't dream of trying to. If someone were to ask me that question, and it's come up recently, I would have to answer when it's time it's time. I know you have to decide on treatment, but as I have said now for the 3rd time, only you & maybe your familys input can decide. You alone know how you feel deep inside, on the quality of life you have had & will have in the future. If you are a believer in God, now would be the time to talk with him too. I know you are very stressed about all of this, & I am always here for you as you already know. I really wish I could give you an answer, but this one has to be decided by you Meyati. Opinions will vary by whomever is answering your question. If a very ill person, they may say just get it over with. A healthy person may say to fight no matter what. I don't believe unless you have been in your situation, that anyone can answer this but you. My thoughts & love are with you my friend. Keep me posted would you please?(Check your PQ's)... Mary
Hi meyati, I have read your question 3 times and each time I decide differently. I go back and forth.
It seems as if you are leaning toward not having the surgery, am I correct?
Will the doctors keep you pain free, either way? Have you asked about that?
I truly don't know what I'd do, I think I'd have to be in your position to make a rational decision.
What does your secret heart tell you to do? What is your gut reaction? Do these oncologists have a therapist you can see? I'd do some therapy for a few days, then maybe, just maybe I could make an informed decision.
You are, as ever, in my thoughts,
I have read your question over and over, I honestly do not know what I would do. Neither answer sounds inviting, my heart and prayers certainly go out to you. All that I know of to tell you to do is pray about it and do what your heart says is right. Quality of life has to be accounted for and I really don't know if either door gives that. God Bless you my friend.
Meyati, I'm so sorry to hear that you are faced with such a grim decision. I'm not clear on what Door #2 includes besides what you wrote, "Door TWO: about 5 years-hair shaved off. Prescription creams for my face-then I'll be begging for surgery." But later on you mention radiation and I believe one surgery? You need more clarification about Door 2 before you make a decision. Why would you be begging for surgery? Because you would be in pain or just your appearance? Would there be more surgeries and how invasive are the surgeries with door #2? You must look at the quality of life from both doors.
You need to get more details about Door #1 as well. How will it feel to have a stomach stent and what are the complications with that? I looked up about feeding tubes and was leery about that. No one is going to care about your appearance from all the bones being removed, but how painful is that going to be? My cousin fell on the sidewalk and broke 1 or more bones in her face and complained about pain and numbness from that for years afterwards.
I can't begin to answer your question in any case, but I think that you would be more able to answer it if you get more information about your choices. Find out also how long do they think you would have if you did no surgeries and only cream and radiation? Just don't think that doing nothing will work because I've had 2 friends who took that approach trying alternative medicine which led to them not living very long.
Perhaps you know more details which I would be interested in knowing about. And get a SECOND OPINION. REALLY. I don't care how great a facility it is. I went to a top level university neurosurgeon who told me that I needed direct brain surgery ASAP which had about a 20% chance of leaving me dead on the table, not able to speak or paralyzed for the rest of my life. Three other opinons all said NO!! So get another opinion and get all the details.
I feel for you and am praying for you. You will look deep into your heart and know the answer, but you do need more information it sounds like. You are one tough lady who has been through a lot. You'll make the right decision.
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