New and conflicted about surgeon options

2

Comments

  • APny
    APny Member Posts: 1,995 Member
    MilaQ said:

    APny, thank you for reading

    APny, thank you for reading my long post and understanding me. I've been stressing out ever since my appointment at Emory, and now fear the surgery more than before I met this doctor.  No, he didn't give me any options as to laporoscopic vs robotic vs open. As I mentioned, he was very brief during that appointment. I actually emailed his assistant yesterday with a few questions, one of which was to tell me a number of robotic surgeries he performed in the last year. No response.

    When I was initially researching this doctor, I mostly saw raving reviews (shocker!), a few unhappy ones because of his lack of care for patients, and even fewer very upset ones. One bad review that stood out, and now resurfaced in my head, was from a son of a women on whom this doctor operated. She died 4 months after the surgery, and this son states that the death was a result of the surgery (she was stage IV).  He was complaining how the doctor wouldn't speak to him or respond to inquiries regarding his mother's surgery. Makes me wonder if this was a practice robotic surgery?  

    And of course it bugs me that his priorities are misaligned with mine. I'm talking about his emphasis on trainees and thier ediucation, rather than on helping me overcome cancer.  This just scares me. 

    My gut feeling is fighting my decision to operate with him, but other than starting shopping for another surgeon, I don't see a better solution.

    Apny, I also appreciate your advice on preparing for the surgery. As I was reading through other threads, I started compiling a list of items to prepare, including spirometer and a trash bag - you wrote about it in one of your earlier posts and I immediately took a note of it :)

    Regarding walking - ever since I found out about cancer, I've been walking/jogging 4 miles on a treadmill every day, plus eating super-healthy. Daily step count ranges 12,000-18,000. I will definitely increase the miles as I get closer to the surgery.

    Is there anyone else at Emory

    Is there anyone else at Emory that you could go with? It's a shame that your gut feelings are against this one. I hope at least you get an email answer to your questions. Hang in there!

  • APny
    APny Member Posts: 1,995 Member
    a_oaklee said:

    Surviving a teaching hospital

    It never bothered us at all.  Every person we encountered was polite.  We felt like if our surgeon was teaching others, then he must be really good (knowledgeable and experienced).  The residents mostly listened and were present.  You can ignore them.  We felt good that we were helping new doctors, and were glad that more people were becoming doctors.  I kept a notepad to keep track of who everyone was.  The hospital we were at, all the staff had business cards with their photo on them.  We didnt feel like lab rats, or that we needed privacy.  It wasnt embarassing at all, nor any concerns with exposure and being examined or questioned.  We had a choice of having clergy visit during my husbands stay.  We welcomed all denominations because it was interesting.  Even the clergy had interns.  We are glad we helped people learn.  I think you should try to think of this differently, and if you cant, then go to a regular private hospital.  Honestly, I think that would be a big mistake.

    We saw our urologic surgeon before surgery, during the hospitalization, and one time after surgery.  He is not our doctor.  He is a surgeon only.

    After you get through this, you can visit a urologist as your caregiver going forward.  Or you see an oncologist.  We see a urologic oncologist.

    I disagree that you are the one that chooses what approach to take with surgery.  Well, perhaps you do have the right to make the wrong choice.  I think this doctor felt that you didnt have a choice because he has determined what is best for you.  Too bad he didnt explain.  Surgeons are kindof known for being the most arrogant of all specialists.  If I had to guess, the guy got offended being asked about his experience in front of his students.  Too bad.  But I do get it.  

    These big places have lots of assistants.  We always have contact with their nurse practitioners who are extremely knowledgeable.   Perhaps it would be good to talk with him/her about whatever questions you may have.  

    Have you visited Emorys website to check out other doctors that do urologic surgeries?  I think you could try to see someone else, but you will have the same audience.

    Let me clarify

    "I disagree that you are the one that chooses what approach to take with surgery.  Well, perhaps you do have the right to make the wrong choice. "

    I meant that you can choose traditional lap over robotic lap; not that you determine whether it should be partial or whole, laparoscopic or open. But laparoscopic can be done either traditionally or robotically. I was told I can have open or lap, robotic or regular. I went with open for various reasons. I assume that the surgeon who does robotic lap can also do regular, non-robotic lap. And Mila should be able to say she does not want the robotic version.

  • MilaQ
    MilaQ Member Posts: 24 Member
    APny said:

    Is there anyone else at Emory

    Is there anyone else at Emory that you could go with? It's a shame that your gut feelings are against this one. I hope at least you get an email answer to your questions. Hang in there!

    APny, yes, there are other

    APny, yes, there are other doctors at Emory, as skilled. I don't know if I get a better experience, but I heard doctors look down at patients who do doctor hopping. 

    I literally just got a message with responses to my questions. Looks like the doctor was responding himself.  Most of the answers were satisfactory. For example, he said that assisting residents would be either senior residents or chief residents. That makes me feel better.

    One answer was worrisom. I asked for a nunber of robotic surgeries he performed last year. He wrote: "Don't know the precise number. Certainly, enough to feel confident". During appointment, when I asked about number of nephrectomies he performs, he said around 300 a year. He knew that number. But not even a ballpark for robotic? So, I feel he's trying to avoid disclosing this information.

    Finally, at the end he wrote this: "Finally, if you feel more comfortable at a private hosptial, with no residents, I would be very supportive of your decision".  I guess he prefers I go away. Not a good start :(.

     

  • MilaQ
    MilaQ Member Posts: 24 Member
    a_oaklee said:

    Surviving a teaching hospital

    It never bothered us at all.  Every person we encountered was polite.  We felt like if our surgeon was teaching others, then he must be really good (knowledgeable and experienced).  The residents mostly listened and were present.  You can ignore them.  We felt good that we were helping new doctors, and were glad that more people were becoming doctors.  I kept a notepad to keep track of who everyone was.  The hospital we were at, all the staff had business cards with their photo on them.  We didnt feel like lab rats, or that we needed privacy.  It wasnt embarassing at all, nor any concerns with exposure and being examined or questioned.  We had a choice of having clergy visit during my husbands stay.  We welcomed all denominations because it was interesting.  Even the clergy had interns.  We are glad we helped people learn.  I think you should try to think of this differently, and if you cant, then go to a regular private hospital.  Honestly, I think that would be a big mistake.

    We saw our urologic surgeon before surgery, during the hospitalization, and one time after surgery.  He is not our doctor.  He is a surgeon only.

    After you get through this, you can visit a urologist as your caregiver going forward.  Or you see an oncologist.  We see a urologic oncologist.

    I disagree that you are the one that chooses what approach to take with surgery.  Well, perhaps you do have the right to make the wrong choice.  I think this doctor felt that you didnt have a choice because he has determined what is best for you.  Too bad he didnt explain.  Surgeons are kindof known for being the most arrogant of all specialists.  If I had to guess, the guy got offended being asked about his experience in front of his students.  Too bad.  But I do get it.  

    These big places have lots of assistants.  We always have contact with their nurse practitioners who are extremely knowledgeable.   Perhaps it would be good to talk with him/her about whatever questions you may have.  

    Have you visited Emorys website to check out other doctors that do urologic surgeries?  I think you could try to see someone else, but you will have the same audience.

    a-oaklee,

    a-oaklee,

    Once again thank you for wisdom. I think the reason I got so triggered about this is because I am the kind of person who needs to know every step ahead. Emory experience was the opposite. I am also a very private and introverted person, therefore the audience and lab approach came as a shock. Had I known this ahead of time, I would have been prepared and reacted less strongly. I do take blame for not researching about teaching hospitals. Truly my bad.

    I responded to APny, just two posts above, regarding the message I just received from the Emory doctor. Would you mind taking a look at it? I'm curious in your opinion on his robotic skills and how much I should be concerned about his suggestion to go elsewhere. 

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Sorry

    I dont think I expressed what I was thinking very well at all.  If I stepped on toes, offended anyone....im sorry.  Not sure if I should try to explain, or if I can.

    What I meant is that sometimes you are not given a choice.  The doc tells you what the plan is.  They choose the plan based on you as a patient, plus what they are capable of, what kind of equipment the hospital has, etc..

    My way of thinking, (which is merely an opinion)  and could be wrong, ....is that when you move on to more experienced surgeons at major medical teaching hospitals is that you are getting the best of the best.  For me, there is a point that you need to trust their judgement.  

    I wish I expressed myself differently.  I should probably just have said that you make your best informed decisions as you can at the time.  In hindsight...the decisions can be right or not so right.  Cant go backwards.  Just do your best to figure it all out.  Its a blessing to actually have trust and faith in your medical team.  

  • MilaQ
    MilaQ Member Posts: 24 Member
    a_oaklee said:

    Sorry

    I dont think I expressed what I was thinking very well at all.  If I stepped on toes, offended anyone....im sorry.  Not sure if I should try to explain, or if I can.

    What I meant is that sometimes you are not given a choice.  The doc tells you what the plan is.  They choose the plan based on you as a patient, plus what they are capable of, what kind of equipment the hospital has, etc..

    My way of thinking, (which is merely an opinion)  and could be wrong, ....is that when you move on to more experienced surgeons at major medical teaching hospitals is that you are getting the best of the best.  For me, there is a point that you need to trust their judgement.  

    I wish I expressed myself differently.  I should probably just have said that you make your best informed decisions as you can at the time.  In hindsight...the decisions can be right or not so right.  Cant go backwards.  Just do your best to figure it all out.  Its a blessing to actually have trust and faith in your medical team.  

    a_oaklee, no need to

    a_oaklee, no need to appologize!  I don't think anyone was offended. Sometimes there could be a difference of opinions and that's a good thing. I am grateful to read about your experience at a teaching hospital, it makes it less scary for me and also sheds a light where I didn't see it. This is a huge value to me personally and to whomever might read through this thread in the future. 

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited February 2020 #28
    I read your last 2 posts. 

    I read your last 2 posts.  Its very hard to comment on this doctor because I wasnt there to get a sense of him in person.  I think its great that he responded personally in an email to you.  I also think its good that he is telling you its okay for you to go somewhere else if you want to.  Its your choice what you decide.   

    Since your husband was with you, what is his opinion?

    Re the review you read about a son that couldnt talk to the doctor regarding his mother:  I agree with the doctor not discussing the mother with the son.  My husband and I filled out forms all over the place, so that I could have information and be present.  When you are admitted make sure they can talk to your husband.  Put it in writing.   Re operating on a Stage 4 patient, we left the care of our fancy doc and medical center because they refused to operate.  They thought he would die.  My husband thought that choice should be his, so we went to another big name place with people who were willing to proceed.  That was in 2013.

    I am pretty sure you can find what you are looking for.  But only you can decide  what you want to do, or how much time you want to spend searching.

    One thing I can tell you for sure is that when your surgery is done, you will be relieved.  I wish the very best for you.

    Im sorry all this is so difficult.  I truly understand the difficulty.

    I wanted to tell you that we didnt have an audience in our office visits.  That happened only as an inpatient in the hospital.  So I feel for you to have the experience that you had.  Our visits were always for an hour, and scans are always shown to us, and explained.  

    I dont know anything about choices of surgical approach.  My husband had to have an open, total nephrectomy because the blood vessels were involved.  

  • jazzgirl
    jazzgirl Member Posts: 240 Member
    Hi Mila

    I was also treated at a teaching hospital - a place I knew and was comfortable with - but I turned down the first doc they had me see despite him being high up (maybe top) in the department. I have to be comfortable with my doc, especially a surgeon. I researched all the oncologists and urologists  and asked for a second opinion from one of the others. I liked his attitude on his video and the way he talked about the surgery and patients - and his credentials are top notch. I was afraid to ask about second opiniion in the same hospital and the nurse said, "Oh we encourage patients to do that." Also I have found that I don't have to accept a resident working on me, at least in appointments, even at teaching hospital.  Maybe I've been lucky. It sure feels like it. I continue to see the same doc (oncologist/urologist/surgeon) for follow ups and would trust my life (or that of any of my family) to him again. I also had the luxury of a place to stay and friends and family nearby. I say research other surgeons at Emory. For me, I have to be confident and comfortable with the person cutting me open - that they will see me as a person. Take care -

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    I got all jealous reading

    I got all jealous reading your post Jazzgirl, where you only have one doctor you love.  I figured out its because you are stage 1, and Im so happy for you.

    My husband saw the Urological Surgeon, Neurology Surgeon, Radiological Doctor, Neurooncologist, Neurologist, Palliative Care Doctor, Pain specialist physician, his GP, Urologic Oncologist at the med center and one locally.  OMG. 10 doctors.  After surgery we didnt see the surgeons anymore.  Now he only has 4 doctors.   It sure was a shock to us, as my husband was very healthy.  

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    Another thought

    You want the surgery to be done in a top notch way-so you get the best surgeon you can find.  I, too, was at a teaching hospital and had a team of two surgeons; one for the kidney and nodes in the lower abdomen and one doing the liver resect, gallbladder, and tubes.  11.5 hrs before being sent to ICU.  The following year, the same Renal surgeon was supervising a Resident for the recurrence in a node.  Both did great jobs, and were pretty good looking, too. In 2006, Surgeon #1 was Head of Urologic Surgical Oncology and #2 was Chief of Thoracic Surgery and in charge of the Liver Transplant Team.  That first surgery wiped me out for nearly 6 weeks and we ended up flying to Portland for my first check up and removal of 63 skin staples (I counted the little buggers). The release check up, we drove and met with the Medical Onc.  After reviewing my case he determined there were no drugs in any stage of testing to put me on at that time, since they considered there was no  active site.  Sutent was one of the only drugs approved at that time and it has been found to have numerous side effects.  But I surprised everyone and had 2 recurrences that were too small to detect in 2006.

     

    A regular oncologist will take over your care, testing, etc. after that.  And you will have a GP or Primary Care doc for other needs.  The point I'm trying to make is try to tolerate a Surgeon with poor bedside manner if he can get you over the surgery hurdle.  My third surgery was done locally by an experienced doctor, but he was lousy at talking to me.  On a follow-up visit, I cracked a joke and he laughed.  I even said, "You can smile."

    Although I had taught Health and Physical Education and subbed in biolgy, plus having had a couple of other major surgeries, Kidney Cancer was a new learning curve. I connected with a local support group that still meets once a week between Dx and the surgery and continued to attend for many years.  I read everything I could find-much on the internet, but sorted the scientific  facts from "quack cures". asked questions, found a couple of other locals with Kidney cancer dx's.  Once I got over the initial shock, I realized I desparately wanted to live and had a lot of things to get done before surgery and recovery.  That kept me focussed.  On the day I received the news, we knew that our daughter was moving back from the middle east with her boys prior to her husband's discharge from the service.  But did she follow thru with her plans to move to Portland, OR, or move to our town to help care for me for the 5-7 month death prediction I had been given.  After the group consult with the 3 doctors at OHSU, the first thing I did was call our son in our home town and tell him to call his sister and let her know she could still plan to move to Portland.

    And here we are, going into 14 years since Dx and 12 years of no cancer.

    Have HOPE  and many best wishes for success.

    donna_lee

  • MilaQ
    MilaQ Member Posts: 24 Member
    donna_lee said:

    Another thought

    You want the surgery to be done in a top notch way-so you get the best surgeon you can find.  I, too, was at a teaching hospital and had a team of two surgeons; one for the kidney and nodes in the lower abdomen and one doing the liver resect, gallbladder, and tubes.  11.5 hrs before being sent to ICU.  The following year, the same Renal surgeon was supervising a Resident for the recurrence in a node.  Both did great jobs, and were pretty good looking, too. In 2006, Surgeon #1 was Head of Urologic Surgical Oncology and #2 was Chief of Thoracic Surgery and in charge of the Liver Transplant Team.  That first surgery wiped me out for nearly 6 weeks and we ended up flying to Portland for my first check up and removal of 63 skin staples (I counted the little buggers). The release check up, we drove and met with the Medical Onc.  After reviewing my case he determined there were no drugs in any stage of testing to put me on at that time, since they considered there was no  active site.  Sutent was one of the only drugs approved at that time and it has been found to have numerous side effects.  But I surprised everyone and had 2 recurrences that were too small to detect in 2006.

     

    A regular oncologist will take over your care, testing, etc. after that.  And you will have a GP or Primary Care doc for other needs.  The point I'm trying to make is try to tolerate a Surgeon with poor bedside manner if he can get you over the surgery hurdle.  My third surgery was done locally by an experienced doctor, but he was lousy at talking to me.  On a follow-up visit, I cracked a joke and he laughed.  I even said, "You can smile."

    Although I had taught Health and Physical Education and subbed in biolgy, plus having had a couple of other major surgeries, Kidney Cancer was a new learning curve. I connected with a local support group that still meets once a week between Dx and the surgery and continued to attend for many years.  I read everything I could find-much on the internet, but sorted the scientific  facts from "quack cures". asked questions, found a couple of other locals with Kidney cancer dx's.  Once I got over the initial shock, I realized I desparately wanted to live and had a lot of things to get done before surgery and recovery.  That kept me focussed.  On the day I received the news, we knew that our daughter was moving back from the middle east with her boys prior to her husband's discharge from the service.  But did she follow thru with her plans to move to Portland, OR, or move to our town to help care for me for the 5-7 month death prediction I had been given.  After the group consult with the 3 doctors at OHSU, the first thing I did was call our son in our home town and tell him to call his sister and let her know she could still plan to move to Portland.

    And here we are, going into 14 years since Dx and 12 years of no cancer.

    Have HOPE  and many best wishes for success.

    donna_lee

    Donna, WOW! Your story is

    Donna, WOW! Your story is both terrifying and inspiring. Prognosis of only a few months to live?? 12 years ago??  How increadible! May your "no cancer" count continue for many, many, many years! 

  • AliceB1950
    AliceB1950 Member Posts: 237 Member
    I've had surgeries at both

    I've had surgeries at both teaching and non-teaching hospitals, and with a variety of surgeon personalities.  I also worked at a teaching hospital many decades ago.  One of the first things we were taught (unit clerks) was that surgeons could be SOBs, but it was because they were so focused on their work, and some developed a hard shell to do what they did: cut into living bodies all day!  That's a huge responsibility.  I want my primary care to have a good personality, but with any other doctor, it's not an indication of anything.  And the residents who assist already have plenty of experience.  If it's a medical student, they observe, and maybe take notes, but mostly make sure they're not in anyone's way.  I love the residents and senior students - they're the ones who will talk to you in the hospital and explain anything you need clarification on.  Same with the anesthesiology residents.

  • MilaQ
    MilaQ Member Posts: 24 Member
    a_oaklee said:

    I read your last 2 posts. 

    I read your last 2 posts.  Its very hard to comment on this doctor because I wasnt there to get a sense of him in person.  I think its great that he responded personally in an email to you.  I also think its good that he is telling you its okay for you to go somewhere else if you want to.  Its your choice what you decide.   

    Since your husband was with you, what is his opinion?

    Re the review you read about a son that couldnt talk to the doctor regarding his mother:  I agree with the doctor not discussing the mother with the son.  My husband and I filled out forms all over the place, so that I could have information and be present.  When you are admitted make sure they can talk to your husband.  Put it in writing.   Re operating on a Stage 4 patient, we left the care of our fancy doc and medical center because they refused to operate.  They thought he would die.  My husband thought that choice should be his, so we went to another big name place with people who were willing to proceed.  That was in 2013.

    I am pretty sure you can find what you are looking for.  But only you can decide  what you want to do, or how much time you want to spend searching.

    One thing I can tell you for sure is that when your surgery is done, you will be relieved.  I wish the very best for you.

    Im sorry all this is so difficult.  I truly understand the difficulty.

    I wanted to tell you that we didnt have an audience in our office visits.  That happened only as an inpatient in the hospital.  So I feel for you to have the experience that you had.  Our visits were always for an hour, and scans are always shown to us, and explained.  

    I dont know anything about choices of surgical approach.  My husband had to have an open, total nephrectomy because the blood vessels were involved.  

    a-oaklee  - you mentioned you

    a-oaklee  - you mentioned you didn’t have an audience at your teaching hospital appointment. In my case, it wasn’t just passive audience. I actually had to have a consult with these two residents first, before seeing my Dr. They asked me some very basic questions, made me unzip my pants and show them my c-section scar (!), then left “to review the scans and will come back to propose treatment options”. They came back already with the Doctor, and at that point became an audience. By the way, there were no options proposed, and the doctor didn’t show me my scans (I did see them with the non-Emory Dr). 

     

  • MilaQ
    MilaQ Member Posts: 24 Member
    jazzgirl said:

    Hi Mila

    I was also treated at a teaching hospital - a place I knew and was comfortable with - but I turned down the first doc they had me see despite him being high up (maybe top) in the department. I have to be comfortable with my doc, especially a surgeon. I researched all the oncologists and urologists  and asked for a second opinion from one of the others. I liked his attitude on his video and the way he talked about the surgery and patients - and his credentials are top notch. I was afraid to ask about second opiniion in the same hospital and the nurse said, "Oh we encourage patients to do that." Also I have found that I don't have to accept a resident working on me, at least in appointments, even at teaching hospital.  Maybe I've been lucky. It sure feels like it. I continue to see the same doc (oncologist/urologist/surgeon) for follow ups and would trust my life (or that of any of my family) to him again. I also had the luxury of a place to stay and friends and family nearby. I say research other surgeons at Emory. For me, I have to be confident and comfortable with the person cutting me open - that they will see me as a person. Take care -

    Jazzgirl – seeing another

    Jazzgirl – seeing another urologic surgeon at Emory has been on my mind. There is a potential alternative, although he specializes in localized cancers only, but at the same time he’s a pro at robotic nephrectomies. The reason I am not pursuing this option is because I don’t want to delay my surgery once again (it’s a long wait for good surgeons). I already waited too long..  

  • MilaQ
    MilaQ Member Posts: 24 Member

    I've had surgeries at both

    I've had surgeries at both teaching and non-teaching hospitals, and with a variety of surgeon personalities.  I also worked at a teaching hospital many decades ago.  One of the first things we were taught (unit clerks) was that surgeons could be SOBs, but it was because they were so focused on their work, and some developed a hard shell to do what they did: cut into living bodies all day!  That's a huge responsibility.  I want my primary care to have a good personality, but with any other doctor, it's not an indication of anything.  And the residents who assist already have plenty of experience.  If it's a medical student, they observe, and maybe take notes, but mostly make sure they're not in anyone's way.  I love the residents and senior students - they're the ones who will talk to you in the hospital and explain anything you need clarification on.  Same with the anesthesiology residents.

    Hi Alice,

    Hi Alice,

    My frustration was caused by my lack of knowledge about Emory. And because I was (still am) a bit emotionally vulnerable due to the new diagnosis, I didn't take it well when the residents were imposed against my will. As to the way this Dr spoke to me, I can get past that. I agree, skills trump the attitude.  I am not worried anymore about assisting residents either - I learned they have to be in their senior year of residentcy to assist during surgery. I'm fine with that.

  • MilaQ
    MilaQ Member Posts: 24 Member
    edited February 2020 #37
    I’m so touched to see how

    I’m so touched to see how many people stopped by to contribute. I am especially grateful, since outside of this forum and the medical staff, I have only 3 people to talk to – my husband and two of my closest friends. Keeping the c-word a secret from everyone else for now.

    As to the Emory doctor, I am exhausted from [over] thinking about this. I decided I am sticking with this doctor, but only because (1) I don’t want to waste any more time waiting for new appointments, and (2) at some point I need to stop tormenting myself as it drains my time and energy.  I am not at piece with this decision at all, and I do worry about his limited experience with a robot. His poor bedside manners I can deal with, since now I know what to expect.

    The reality is that I am still processing my diagnosis. My emotions are still raw, and my fears are very strong at this point. So, I probably somewhat overreacting.  You are right, once the surgery is over, things hopefully will get better. Until then, I’m a mess.

  • jroco
    jroco Member Posts: 25
    MilaQ, sounds like you are

    MilaQ, sounds like you are still struggling with your decision. I sent you a private message, regards Rich

  • jazzgirl
    jazzgirl Member Posts: 240 Member
    a_oaklee's question

    I kind of lost track of stage - one nephrologist after surgery listed me as stage 4; the one I see now lists me as stage 3. I'm away from home so can't find the surgeon's note. I try not to think about it too much. So I do have another doc - since my surgery was in another state, I go there each summer for my follow ups, see friends and family, work on or attend a retreat, and go to jazz band camp. During the rest of the year, I have an appointment with a local nephrologist. I have to admit I was a little intimidated by her in the beginning, but over these 3 1/2 years we've gotten into a good working relationship and I would not want to change. So I check in with one doc or the other every six months, with a scan every year, alternating ultrasound and CT. 

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    Keeping it a secret

    Some want to share with no one but 3 people like you.  That is your choice. I found that once the news was with my husband and son, they both wanted to find out all they could.  And since I work in an office with the public,  it didn't take long to get around  the area-that and the fact that I had to let coworkers know I would be gone a lot.  The outpouring of concern was emotionally lifting.  Yes, I had a few recommedations to: drink a weird tea (that guy died anyway); or, "If I'd had the money, I'd have taken my wife to Mexico for treatment."  I Thanked them for their thoughts and ignored them.  By then I had discovered that the only true cure for our type of cancer is removal from the body; and hope that no cells have metastasized to grow in another place.  Then, the newer drugs can shrink tumors to make them operable, immuno drugs, and others.  

    I know Atlanta and it's surrounding communities are big, but don't be put off by fears if others know about the cancer.  Before surgery, I couldn't say much other than we knew it was Stage 4-kidney and liver.  After surgery, I decided to be very open and use it as an educational tool for some of the signs or symptoms that people might have.  Now, I have friends, business acquaintences, and others who see me, and with a pointed look, ask how am I doing.  They care.  And your friends will too.

    Have Hope, and hugs to you,

    donna_lee

    p.s-if nothing more, we'll keep your mind busy reading emails.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    My husband only told me and

    My husband only told me and the kids and swore us to secrecy.  I respect his choice, but its really hard on me.  I want to reach out and get the support from other people, but I cant.  CSN certainly helps when I need to connect and talk about it.

    Its been 8 years now and I can see how wonderful it is to not tell people.  He doesnt want to be reminded of "c" everytime he sees someone.