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My oncologist - Full of good news today (NOT)

eric38's picture
eric38
Posts: 588
Joined: May 2009

My oncologist told me that I am probably in remission ( Good news ) but that the cancer will return (bad news) and that maintenance chemo will improve the length of remission but not the overall survival time because I could die from a myriad of other complications due to a compromised immune system or damage from the chemo. In other words, if I don`t die from cancer, I`ll die from my body giving out. He said the survival rate for my condition was pretty much zero. I get where he is coming from - he doesn`t want me to have what he considers false hope but I don`t think any hope is false. This for some reason does not send me into a depression but it is a little tough to hear. I don`t know what I was expecting. He already told me I was incurable. I don`t dare ask how long he thinks I`ll live, it will just cloud my mind. All I can do is hold onto my faith, live to the fullest every day and hope for the best. I don`t think I am saying this out of denial but I believe that I will surprise everybody with the length of time I live. I refer back to a post lesvanb left one time - Ain`t dead yet.

Eric

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Eric

That is certainly sobering news alright - straightened me right up.

I know your strength and resolve are tough and we've all talked about extensions in our lives to wait for other treatments or procedures coming in the pipeline.

I know you will give it everything you have - I'm glad you're not depressed, but I know it must be like getting hit in the head with a frying pan or something - just not EZ to hear ever.

You and I have talked alot and shared quite a bit in a short time - I have faith in YOU. I know you won't go down EZ without a fight - a TEXAN never does :)

My onc used to tell me too, that Cancer won't kill you, but the treatments will - so I relate to what your doctor told you - that' the double edged sword in all of our battles - the body has to hold out in order for us to win and the more you beat on, the more you take away from it. We have no choice but to trade TOMORROW for TODAY, because "One in the hand is worth Two in the bush." We rob Peter to pay Paul.

I'm disappointed for you, but not going to give up on you - No Way. It would be a devastating blow to me to have something happen to you.

I've been working on my Christmas project and Santa has your package just about ready to go, so you will be getting it probably next week - I hope that it brightens your holidays some - It is a GIFT that I love to give my dear friends, such as you.

I appreciate your candor in letting everybody know what's happening - you do sound pretty good, especially with that kind of news received.

You've been through so much since I have known you and I know throughout your life, you have had alot to deal with - much more than anything I've been through. You are a strong man, full of courage and goodness and I feel a blessing will still be coming your way - we just have to stay after it.

So, Texas 2-Step, stay in the fight and Craig loves you and I hope my present helps your mental outlook some and provides a few moments of healing.

We'll talk soon - Craig

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Here is what I love so much about your posts-
this one clearly for Eric, but I got so much from it that I just want to hug you with thanks

((((((((hugs))))))))

PhillieG's picture
PhillieG
Posts: 4906
Joined: May 2005

Man, talk about good news/bad news.
Sometimes people don't do as they think they will, they often do better and you are one of those who can do better than the average guy.
Don't ask, they don't know and it won't be useful.
-phil

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

no, you aint dead yet!

remission is good- and especially good if you are feeling better! I think your core attitude is the critical piece Eric- to live each day to its fullest - no promises about tomorrow - and of course none of us have that do we? I think a thread of hope is important, cause really there are all kinds of unknowns in the equation and I for one do not think it unrealistic to bank on or work on some of those unknowns.

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

I think your oncologist is a bonehead. I can't believe he told you that! My uncle, a physician, had a basic philosophy that as long as a patient is alive and breathing there's plenty of hope, and plenty of reason to encourage them. Clearly you're doing lots more than just breathing. I appreciate the delicate balance between giving a patient an accurate picture of their condition but to do so in a way that makes it seem hopeless is irresponsible (I think).
I think you hit the nail on the head when you wrote "I believe that I will surprise everybody with the length of time I live." Focus on that and show him he's wrong about you.

Meanwhile, bask in the glow of knowing that you are loved by so many people -

take care, buddy,

Adrian

Annabelle41415's picture
Annabelle41415
Posts: 6373
Joined: Feb 2009

I agree with Adrian also. I don't believe your oncologist should have gave you a zero cure rate and not to have "false hope." Hope is what gets the human race through so many different situations. If it at all possible, could you get another opinion? I do admire your spirit through this good/bad news. I am glad you are in remission though and if those new drugs can keep you there longer than that is good news.

Kim

AnneCan
Posts: 3692
Joined: Oct 2009

I have to agree with Adrian, & unless your oncologist has magical powers how can he say the cancer will come back, when you are in remission? He could say it may come back, just as it might for anyone. You have a great attitude & I believe that takes you a long way on this journey. Unfortunately this onc. took good news and added "what could happen" to it. I hope you enjoy the good news & push the other on the back burner. Being in remission is something to celebrate!

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

and it isn't your DR! Statistics mean nothing and miracles do happen. Your body may be tougher than you are giving it credit for. And you are right, there is no such thing as false hope. Hope and faith is what you need to get you through. The fact that you are up and typing is enough to go live your life. Do not give up or give in to this!!!

Being in remission is GOOD, no GREAT news. Just focus on that!

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Wow what a tough conversation to have. Focus on the good news for now, you are probably in remission, celebrate that and take comfort in that. One never knows how long their remission will last, no one can tell you that. Stay focused on the good news. I'm fairly new to the board and with each visit we have with the oncologist I listen to all he says and come home with George and focus on the good points of the visit. I'm not stupid, my husband has Stage IV, lots of mets to liver and lungs, but when our scan came back with fairly good news, we celebrated that bit of good results. Take care - Tina

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I don't like what he said, you are in exactly my situation as well, I think the maintenance therapy is us to be kept on until we can't take it anymore, but at times I think also it has helped others become operable, and seek other opinions, my onc didn't even tell me that. She said people live like this for many years on maintenance, and then we can still seek out other options down the road, right now, it's all about "stabilizing" it.

Don't you despair with that news, I know you have alot of hope, we all do, and we're never losing it, take it day by day ;)

Hugsss!
~Donna

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

I recently had someone point out to me the difference (in these sort of situations) between "what is probable" and "what is possible." Doctors tend to focus more on what is probable rather than what is possible. I think the trick for all of us in this situation is to strike a balance between the two - acknowledge what is probable, but focus on what is possible.

ok - I'm done now.

Adrian

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

If you can stick around another year or so, some "cures" are on the way! As for your body failing. They are doing some crazy stuff. Artificial livers and kidneys are prolonging life. If you can stick around another 10 years then you can expect to grow your own replacement organs. In the mean time living donor liver transplants will help out. Then there is genetic therapy. You will be able to reverse the effects of the chemo within 20 years. For now, you're cancer free. That's pretty sweet.

coloCan
Posts: 1956
Joined: Oct 2009

No doctor can predict with any degree of certainty how long anyone of us has left as no one knows what the cells inside our bodies are going to do next, with or without additional chemo, etc.Who knows if a tumor that had been growing won't suddenly stop and start shrinking because that was its time to do so?Having a powerful will to live can help in this battle....Steve

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Dearest Eric,

I am sorry to hear that your oncologist had such a dismal report for you. I don't think he knows you like we know you. You are a fighter and a very strong person. No one should ever take our hope away. I believe in miracles so no matter what...there is always hope. You continue to live life to the fullest. I know people say that we are not guaranteed a tomorrow (which is true), yet it's very unnerving to have a date stamp put on. As said before, the doctors do not have the right to do that. I just wanted to send you big hugs and prayers. You have certainly been an inspiration to me and impart so much wisdom and caring. Please know how much you are loved and respected. I will continue to lift you in prayer. Thank you for sharing.

God Bless You,

Debbie (gramma)

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Live in the now, live your life to the fullest and do not lose HOPE! Someone also told my sister she had a 0% chance for a cure, but she is still fighting and she is still alive. Noone knows how long! Hang tough and I am glad you have great faith.

thready's picture
thready
Posts: 475
Joined: Sep 2009

Eric,
I won't repeat what everyone else has said, but one thing I was thinking about, you are in remission now, now is the time to rest and enjoy life! Who knows what will happen, but your body has time to heal. Yea this cancer thing is tough on a person, but you are wonderfully made, you can heal and have what it takes to fight again if needed. Who knows you might never need to revisit chemo again!

Take care Eric, miricles happen, doctors are often wrong, and you are a hero here.

Jan

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

You got some great thoughts from the others and I have to agree with them. I also agree with Craig who said 'I love you'.

Diane

eric38's picture
eric38
Posts: 588
Joined: May 2009

All of you are such sweet and caring people. I thank God for you. I know doctors go by the book and the stats but sometimes people defy stats and I think my doctor is an atheist so he does not believe miracles happen, but I do and there are new things coming out all the time. The doctor is still going to give me 4 more mop up treatments but at the present moment I have had a break from chemo for about 3 weeks and am feeling better than I have in 2 years so that is the positive in all this. I am certainly not on my death bed. Whatever comes my quality of life has improved because I was so fatigued for such a long time before my diagnosis. I`ll certainly live alot longer than I would have without treatment. The surgeon was under the belief that i wouldn`t have lasted 6 months if I didn`t respond to chemo. Those are the things I can be grateful for and I am prepared to face whatever comes but I believe that I will be sticking around for a while. I come from a family of survivors. If there was a nuclear holocaust it would be me and the roaches left.

Eric

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

You are NED now. You did respond to treatment! Beyond that no one can say what can/will happen. You might remain NED. Others have. At least you are getting a rest for your body for now from treatments, so if it does come back and you need to fight again you'll be ready.

My guess is that you'll eat the roaches, leaving you as survivor!

Please don't let this one doctor get you down. Celebrate NED!!!

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

HI Eric, broke my heart to read what you are going through. GOd bless and miracles do happen. Try to keep your chin up, I'm praying for you.

KFen725's picture
KFen725
Posts: 108
Joined: Jul 2009

Eric, I am sorry that you had to hear some sobering news today, but I am glad that for now, you are in remission! We got the sad news this week that neither Folfox nor Folfiri has done a thing for my mom, and she actually has a few more new liver mets. She decided to stop chemo ("the right decision", according to her dr) and isn't interested in clinical trials. So, now she is in a similar place as you - trusting in God to do a miracle! Dr's are certainly not God, and ALL THINGS are possible with Him. Praying for a miracle for you, buddy!

Kelly

eric38's picture
eric38
Posts: 588
Joined: May 2009

I am so sorry about your mother but hope springs eternal and I hope that your Mother does well. It sounds like a natural alternative might be good for her. You can`t lose by trying. Everybodys body is different and people respond in different ways but you may stumble onto something that works for her.

Eric

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Eric, you kick some butt!!! Kelly, hope your mom doe try to find some alternatives, they are out there!

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Which is truly amazing considering your oncologist!

Eric, it must be very hard to have to hear this stuff from the one who should be a "hope-bearer" and leader of your medical team. As long as you are still alive you might as well find another oncologist!

Being realistic is one thing but leading a patient to despair! That is too much. I am so sorry you have to deal with this.

It was said above, and I've heard it put like this... "There is no such thing as false hope. Only false despair."

You are remarkably resilient and I admire your ability to get past this stuff and serve as a source of inspiration to the rest of us.

Be well... Rob; in Vancouver

"The note we end on is and must be the note of inexhaustible possibility and hope."
Evelyn Underhill

maglets's picture
maglets
Posts: 2592
Joined: Jun 2006

what an amazing wonderful attitude you have. When I had my ....ok this is it! message from my doctor that was 4 years ago. Eric they don't know ....god bless em but they don't.

Have you ever tried this. I would get in beddies and DH would read to me. It didn't seem to matter what but sometimes it would be a story of pioneer struggle when no one could survive??? Except they did. I always drifted off to sleep....thinking about others and their challenges.

Hang in kiddo and hugs from the north

mags

thready's picture
thready
Posts: 475
Joined: Sep 2009

Eric,
I wanted to suggest you might go vist the folks at UT Southwestern. I saw a Dr there for a second opinion and he offered alot of hope. Craig goes there also, just a suggestion.

I will also say I will bet on you surviving over the roaches!!!

Take care
Jan

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Eric.. I truly believe that your quality of life has improved because WE know how fast it can all be gone. We now live everyday as what it is. Life is a gift.... How WE treat this gift is up to us. You my friend have a gift and you share it with us every time you post. The few who know the real you are lucky. You have taught us to be strong, to open our hearts, to share our feelings, and how to be a true friend. If you pass tomorrow know that you gave this world a GIFT that many others will NEVER know of. I'm one of the lucky ones who has grown because of you. You aren’t going anywhere for a long time anyways!!!.

Life is funny sometimes
Brooks

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I am so glad to see you! I have been missing you soooooooooo much!!! YOU ARE NED!!! You have NO cancer today. We all know that tomorrow is a question mark. Who cares... Look how far you have come... my God..NED! If it only last a day... or a week.... that's just that much time we are free of the beast. I too face the same dilemma you do... FAITH is the key word here. I would not be where I am without it. I know that chemo is like the beast itself but gotta fight fire with fire. WE WILL SURVIVE.... and win!!

Love ya.... Jennie

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

OK, Gonna be frank here, really Im just Buzzard but for the moment Im gonna be frank...I am very sorry that your "ex" oncologist doesn't know you better than we do for if he did then he would have never made that statement. What a dipstick, yep he's a dipstick. Now, as for the way you feel, like a truck has run over you. But you are young resilient, and smart enough to know that that Onc is full of BS if he thinks your going anywhere except out of his office......see what Lisa42 has to say about Dr Cantrells visit. Do as I did, call around and find out more options that you have about other treatments or trials. Even the Interferon and Lovastin sounds a whole lot better than "well your in remission but maybe not for long"....I am raising the BS flag on that one. Hes not the only Onc in the world and at this point I would inject mouse pee if I thought there was a snowballs chance that it would help me.....I know you I think and I don't think you will sit idly by and let your Dr lead you into an end of life situation.....Take the remission time and get on the phone, I did and Im positive in my own mind its the reason I'm alive today......I want to see just how diligent you are...I also want to see if I know you like I think I do....I think I do..You are and will always be one fine young man, there's not many of them anymore....Good Luck to you young man....Im right here if you need anything at all....Clift

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

HO HO HO!!!

Eric,
Santa stopped by my house this morning and he has picked up your package and wingin' it your way right now! He's a pretty cool cat after all

You'll probably have it by Saturday at this rate - he told me he'd slide it down your chimney or perhaps put it in your mailbox :)

You know it's going to snow here tonight and tomorrow, don't you? Santa brought Rudolph and you know he looks just like he does on TV - his nose is so red, but Santy brought him to cut through the Texas snow :)

Ok, I've caught the spirit and just feeling goofy tonight! So, I've finished a couple of packages and Santa has them now and they are on the way...me and Santa are taking a break along with the elves from the workshop to check the board...but no rest for me, it's back to work putting those packages together for all the good Boys and Girls on this wonderful board.

I do hope it makes you feel better AND don't let on to anyone else what it is, I want this to be a surprise, I have so few that I can still give out that make me feel so good!

Take care my Amigo
-Craig

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Eric,

You are far too precious to this group to go anywhere! A lovely person like yourself is a blessing to us all, and we don't want to be deprived of that blessing. I'm praying for only good things for you, including a positive new oncologist!

Don't let that guy take the wind out of your sails. You're NED, and you deserve to dance and enjoy it!

*hugs*
Gail

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I have only been posting here for a couple of days. I agree with all who said in one form or another... "kick you onc. to the curb". I can tell from your postings that you have the necessary spirit and attitude to prove him wrong, wrong, wrong. Focus on the positive information "remission" and mentally take the rest of it to a cliff and kick it over the side.
Warmly,
Joanne
Thoughts become things - choose the good ones.

eric38's picture
eric38
Posts: 588
Joined: May 2009

Thanks to all of you for the wonderful posts. I think about you often even though I have been absent from the board lately. Craig - it sounds like you are working hard on your gifts. I`m sure whatever it is it will be wonderful. As soon as I get it I am going to send out a post telling everybody what it is. (kidding) I can keep a secret. Thanks for all your work and preparation. Brooks - Thank you for the kind words. They mean alot.

Eric

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

and dont you ever for get it. You're a wonderful person. Take what Buzzerd says and run with it. He a wize man and know's what he's talking about. We're lucky to have him too. As we have so many others on this board. We're in this together.

Life is funny sometimes
Brooks

CanadaSue's picture
CanadaSue
Posts: 340
Joined: Apr 2006

Eric,

You have been such an inspiration to us all!

I can't add anything that has not all ready been said, but keep on keeping on!

You are in my thoughts and Prayers.

Hugs,

Sue

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Ditto to what everyone else said. Especially "Frank" (aka Buzzard). There are wise words in his posts. You are an amazing fighter and I can't envision you stopping that now, na matter what some dimwitted oncologist thinks.

Your semicolon army is behind you!

Many hugs, Vicki

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

You're in good hands here, and like my other bro there said, you're onc is a dipstick, but I would have put it more meaner like Dipsh@t.

Hugsss!
~Donna

dorookie
Posts: 1736
Joined: Jul 2007

We are with you, and we will fight with you, you will not be alone in this fight. I would like to fight that ONC of yours, he just pisses me off. No one has the right to take away our hope, and no one has the dates on which we are to expire, if he had that I would suggest he go buy a lottery ticket. Ok enough of the anger, please know I am thinking about you and praying for you, When I pray, I dont ask for a specific thing, I ask that God will take care of the persons needs that I am praying for, besides a cure for cancer, I dont know exactly what your needs may be, but I know God does. Stay strong and know you are cared for by some of the finest people in the world.

God Bless
Beth

eric38's picture
eric38
Posts: 588
Joined: May 2009

Beth - I agree. These are some of the finest people on earth. Buzzard - If there is anything I have learned from being a part of this community it is that every stage 4 person on here that survived did it because they were pro active. I will definitely take your advice.You are a wise man. One day I will learn how to snatch the pebble from your hand.

Eric

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

I think its good news you are in remission and The other stuff you will beat i just know it.

take care

michelle

cyndi2324's picture
cyndi2324
Posts: 72
Joined: Oct 2009

Keep Fighting Our Drs. are NOT always right. WE never know what new drugs will become available.
Enjoy your NOW.
Cyndi

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hi Eric,

Not sure if you remember me, it's been a good 7 months or so since I've been on the boards. Long story but suffice it to say, I came back today to try and find an email address and noticed your topic, so did a quick read/scan and... well, I just couldn't sit on my hands, I had to jump in and add my CDN .25 :)

First... your doctor is a bonehead!! He may be smart as a whip and exactly who you want on your side for going to battle against this monster, which is probably reason for keeping him on your team, BUT his "survival rate for being a top notch compassionate oncologist is pretty much ZERO" ;)

Ok... let me give you a personal reason why I advise you not to take him and his stats as proof that you are going to be gone any time soon. For those of you who know me, I'll try to be quick and not bore you with my details but I was diagnosed Stage 3 colon cancer back in Dec 2006 (yep, 3 years ago). I had the surgery, then 8 months of chemo and 6 weeks of daily radiation. I was told the chemo would/could be rough on me and with the combination of the 6 weeks radiation, I could even become dependant on a wheelchair. Ok... so I mentally prepared myself (or so I thought)... but am not sure when this was all suppose to hit me because I did just fine and proceeded to get involved in lots of volunteer work with my passion, the theatre. I finished my 8 months of chemo at the end of Oct 2007 and patted myself on the back for getting through it all... and doing so well! I then planned for a celebration trip to Hawaii in January, 2008.

In Dec, 2007, I had my post chemo CEA blood test and the reading was "elevated". It was a 8.0... not exceptionally high, but higher than the norm (4.0). My onc told me to go have fun in Hawaii and we'll do the test again when I got back.

So, jump to Feb 2008 and we did the test again... now it was a 14. Hmmm... ok, this is a little worrisome, so my onc ordered a PET scan. Lo and behold, what a shock... my right adrenal gland lit up like a Christmas tree and there were 4 small spots that lit up in my lungs.

That's when I got the "I'm so sorry, Cheryl... the cancer has spread. It now is in your right adrenal gland AND your lungs. This means you are now a Category 4 and the cancer is now considered systemic. I'm sorry." Sorry? What do you mean your sorry? What does this actually mean?? "Well, statistics show that for a Cat 4 the survival rate is 2 - 24 months max." HELLO?? Are you saying I'm going to DIE???

Needless to say, I freaked out! I swear I had an out of body experience... which is something shock can do to you. I was TERRIFIED and couldn't really think straight. My oncologist (who I adore) was there for me and said, "Cheryl, come back... we have to talk" which sort of had me come back and refocus, but I was really not in my right mind nor could I concentrate on anything she said (thank goodness I brought two good friends with me so they could absorb what she was saying).

The end result was, she had taken my case to a roundtable conference of Oncs/Surgeons/Radiologists/etc. and they recommended removal of the right adrenal gland, but chemo seemed to be the only treatment for the lungs since surgery was not an option (tumours are in both lungs). So, I had the surgery for the adrenal gland and then we did a lung ablation procedure on the largest lung tumour. Of course, we also had a CAT scan of the lungs and found out that in total, I had 12 tumours... now 11 since the lung ablation took care of the largest. The other 11 were too small to ablate.

Well... that is coming up 2 years ago. Uh huh... my 2 years max sentence is running out as of this coming February ;) I have yet to go on chemo for the small tumours because I have totally baffled the oncs! Colon cancer mets to the lungs are suppose to be fast growing, hence the chemo to slow down the speed and shrink the growth of them... plus once mets have started in the lungs, others tend to pop up fairly consistently. My onc says that the growth of the ones I have are considered "excrutiatingly slow" growing... in all her career, she's never seen such slow growing mets.

It has been 2 years 2 months since I had my last chemo treatment and it doesn't look like I am going on it any time soon. BUT if the time comes that the tumours do start growing, then of course I'll go on it to shrink them back to this small size (or make them disappear). But as my onc says right now, there's no sense going on chemo NOW because the tumours are doing exactly what we would hope the chemo would have them do... slow growth!

Phew... so why am I mentioning all of this?? It's because *I* was given the same talk as you... that I am incurable and that my survival rate was pretty much zero... and even given a time sentence of 2 - 24 months to live. And I haven't even begun to feel sick yet ;)

So take the information you were given as that is just the stats talking, the textbook "studies", the "guesstimates", etc. and know that there are all those who defy the odds which is just as normal as those those who the stats are based on.

Hang in there... and allow yourself the gift of hope :)

Huggggggggs,

Cheryl

PS: Now, off I go to gather the email addresses I was looking for ;) Hatshesput... if you read this, could you send me a private message with your email address?? Merci!

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

It's so good to see you here, my heart almost stopped, and had to reply to you as how happy I am to see you here, and hope you come back more often, lots of nice new folks here as well, who would love you! You have helped me in so many ways, and I still read your old posts, and really wish you'd come back for us, we really do miss you!

I hope you think about it, and post sometime more, we love hearing about your progress, and miss you charming wit!

Hugssss!!
~Donna

Julie 44
Posts: 479
Joined: Oct 2008

Man am I glad to hear from you!!!! I have been very worried about you... I am so angry at the doctor for telling you this...He had no right to say those things....Can you go to a Cancer Hospital and get a second or third opinion on this???? I am sure there is more they can do for you and with this rest in between it will do your body good...Take it very easy and enjoy NED for as long as you can...You have been such a big help to me in my journey, You have given me hope,faith,a sounding board,sympathy and many many laughs....I just wanted to Thank You for all you have given...You are truely a special person and I am glad I got to know you....Please check into seeing another doctor. I know you are tired of doing this but you have to man you just have to.......Please keep us updated we are all worried about you....Take good care of yourself and rest rest rest.....JULIE

Trapbear's picture
Trapbear
Posts: 109
Joined: Sep 2009

Hi Cheryl,
My partner is in a similar situation, original stage 3 Dx in Dec 07, chemo for six months, then found lung mets in Jan 09, biggest removed for Dx reasons, there are still about 7 or 8 spread throughout the lungs, very small, all under 10mm, they have not changed much this past year, he gets CTs every 3 months. The next one is in Feb, the onc wants to start chemo (folfiri) if anything gets bigger than 10mm. Your story really gives me hope!! Our onc also says that his mets are very indolent, slow growing. Hope this is a good sign!!!
Bill

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Bill,

It sure does sound like your partner and I are in a similar situation... and the slower they grow, or the lazier they want to be, is just fine with me :)

Even if one or two of them do start to grow... if the others don't then have your partner talk to his oncologist about the possibility of the RFA procedure (Radio Frequency Ablation). Not all radiologists can do this procedure but if there is someone nearby where you two live, it's definitely worth pursuing. With a history of slow, indolent growing tumours in the lungs... well, if one or two start growing past the 10mm, a RFA radiologist could go in and zap them and bye-bye tumour!

It's a procedure that is non-invasive (compared to lung surgery). You go in, have the procedure done with the help of a CAT scan (usually under General Anesthetic) and because of the General, they usually want to keep the person overnight for observation. In my case, I was soooo back to normal within an hour of coming out of the anesthetic and when they took an xray of my lungs and I could take the deep breaths... they released me from the hospital that same day. I seriously could have gone shopping after we got out of the hospital... and I could have driven myself home, but that was a no-no so I stayed at a friend's house who lived close to the hospital

That is one of the options we'll be looking at again should these two tumours that are showing some growth movement get any bigger... if we could zap them before going back on chemo, well so be it :)

Soooo.. lots of hope ahead, even though we are still considered (and always will be) the dreaded Stage IV :)

Cheryl

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Cheryl,
I was thinking hard about you yesterday, which means I miss you and all your love and wisdom. So very, very good to see you post.

Aloha,
Kathleen

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Do I understand correctly that you are deciding now whether to do the maintenance chemo or not? My suggestion is to do the chemo. Even though your oncologist says you cannot expect it to extend your life, if it suppresses the cancer for a longer time, that should put you in a better position to profit from future advances in treatment.

eric38's picture
eric38
Posts: 588
Joined: May 2009

You are correct Greg. He said when I am finished with my mop up treatments that I will have a decision to make. Either go on maintenance or wait until the cancer returns and start on chemo again.

Eric

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Eric,
You are a strong guy and you have a lot of living to do. Second and third opinions are good. For now, go out and enjoy your NEDNESS!!!! Have a wonderful holiday season with lots of laughter and joy. Truth be told not one of us knows how long we have. We see this every day in the news. The only option we have is to go live life to the fullest!

Thinking of you.

With prayers and aloha,
Kathleen

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