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Bad office visit

richls
Posts: 54
Joined: Nov 2012

Frustrating day at doctors office. Has anyone ever have a PA tell you that they don't do surgery to remove tumors because you can not be cured? That is what she told my wife after I asked if surgery is an option. She also told us that long term chemo treatment is only for "curable"  cancer patients andthose with uncurable cancer are 3-4 treatments at a time. My wife was so down in the dumps after that visit it took everything I could do to cheer her up. Oh, she also told her she probably won 't be going back to work becausr she will probably be on chemo the rest of her life. She also told us that since there is no cure, she wont ever be diagnosed NED. Because stagefour patients dont have NED. I was pretty upset after that. Is what she said true?

PatchAdams
Posts: 272
Joined: Nov 2011

First, no PA should be giving out such info.

Now, surgery to remove a mass in the colon or rectum  may not be done if there are mets in several other places.  The ideal might be to shrink tumors, say in the liver, that could put your wife in immediate danger and then remove the tumors all at once, at a later date if chemo shrunk them.  Lots of variables at play.  I've had several friends who never had their CRC surgically removed because there were too many other mets to fight in more than one vital organ.  None have survived BUT they did live another 5 or 6 years after their Stage IV dx.   

Chemo doesn't cure colon cancer.  Yes, it can cure leukemia, but not colon cancer.  It shrinks. It controls. It stops progression, but it's not a 'cure'.  Some people obtain long term NED after chemo, tho.   Surgery is curative.  No one can stay on long term chemo for long periods because the cancer gets smart or our bodies get poisoned.  It might be a stop/ start/ change type of chemo fight. 

Regarding work....  Phil and Craig, Nana and many others work full time and are Stage IV (NED for some of them).  I work.  

Your PA may have given you correct info but not explained in enough details for it to make sense.  She may think she's 'as good as a doctor' and spoke out of turn.  However, please call that dummy and tell her Patch is NED and Stage IV.  In fact, I was dx'd 4 years ago this week.  

 

Lovekitties's picture
Lovekitties
Posts: 2950
Joined: Jan 2010

I think I would call the doctor and list as you did for us all the things that the PA had to say.

Then if the doctor agrees with the PA, I would promptly say goodbye and find a new doctor.

Sounds to me like the PA is ready to write off any stage 4 cancer patient.  Instead, he/she should be the one terminated.

Just my opinion on the subject.

Marie who loves kitties

jen2012
Posts: 1208
Joined: Aug 2012

I wouldnt be seeing her again. Actually i dont care for the pa at my husband's doc either and they charge as much as the doctor so we refuse visits with her. I would explain what happened to the doctor and how much it upset you and your wife....and think about going to someone that tries to help not just discourage. Im angry for you. My husband is also stage 4 and they are planning surgery. Has your wife talked to a surgeon. Im always a little amazed at how different the conversation is with the surgeon and then the onc. I sometimes wonder if they are looking at the same chart!

tanstaafl's picture
tanstaafl
Posts: 970
Joined: Oct 2010

She got bad advice.  Patients with mets may get surgery for a variety of reasons, such as obstruction, or favorable aspects.  My wife got a 2nd surgery when I could reasonably demonstrate that her mets were under control, far better than expectable.  She has done a mild immunochemo every day for over 2.5 years and is active everyday.  Some stage 4 patients do make it to NED.  Mostly persistent ones.   

I would be looking for better advice and "fire" that one.  

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

I am so glad my doctor doesn't have a PA.  I would refuse to ever see that PA again, and I'd let the doctor know exactly what the PA said, and as suggested above find a new doctor if the doctor approves of what the PA said.

There are many of us here that were told no surgery EVER, and still we got our surgeries and a few extra years, some many extra years.  So far I have 2 extra years!!

What freaking nerve your PA had, I'm still ticked off about it!!!

Winter Marie

 

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

I work full time and am a stage 4.

I was told by my doc not to expect a cure.. but that was my doc.. contoll is the best we can hope for and that is where I am now.

The level of the disease is what makes the different.. Many of us can be Stage 4. but a differenct places in Stage 4.. How progressed is your wifes cancer is key to understanding more.. Mine is minimal (so they say- I have come to hate this word as it seems so vague).. my mets are only in my lungs.. I have no cancer in my colon since my surgery. my lymph nodes appear clean as well as my other organs. Others will present at stage 4 with lynph nodes, liver, spleen, brain, lungs, pertoneal and bones involved.. so where the mets are and the amount of them makes a difference.

Should a PA have had this coversation with you and your wife... I think so.. however it appears the way she advised this information was not optimal.. and caused these reactions.. I highly suggest you speak to the DR and advise what occurred and how you are now feeling.. I am sure they will be sorry for what occurred. Though they cannot take back what was said I am sure they will be appologetic.

Hang in there...

Annabelle41415's picture
Annabelle41415
Posts: 4271
Joined: Feb 2009

Get a second or third opinion.  That just doesn't seem right.  There are people that have treatment and then become operable because of the treatment.  Sorry your wife had to hear news like that.  Please get another doctor.  You can try every option available to you but you have to sometimes seek it out. 

Kim

thxmiker's picture
thxmiker
Posts: 1225
Joined: Oct 2010

I just had a Colon Cancer Surgery and the Surgeon tell me we did not do the surgery for there is little hope for you.  WOW!  The Oncologist came in the next morning and told me my only hope was speaking with Dr. Lenz.   We went to USC and Dr. Lenz said he would set up a treatent and I should be able to control f not cure my cancer.  What a difference a Great Doctor makes!

 

We are sending our thoughts and prayers for you to also find a Great Doctor!

 

Best Always, mike

 

PS  If we had listen to either fo the first two Oncologists we spoke to, I would not be here today.

thxmiker's picture
thxmiker
Posts: 1225
Joined: Oct 2010

I just had a Colon Cancer Surgery and the Surgeon tell me we did not do the surgery for there is little hope for you.  WOW!  The Oncologist came in the next morning and told me my only hope was speaking with Dr. Lenz.   We went to USC and Dr. Lenz said he would set up a treatent and I should be able to control f not cure my cancer.  What a difference a Great Doctor makes!

 

We are sending our thoughts and prayers for you to also find a Great Doctor!

 

Best Always, mike

 

PS  If we had listen to either fo the first two Oncologists we spoke to, I would not be here today.

richls
Posts: 54
Joined: Nov 2012

thank you everyone for your advice. Yeah , I dont think we will be seeing her again. We generally`like the dr. we have, but they keep us in the dark about what there plan is. The dr. she has had never said there is no cure. Just another dr. in the office and this PA has said it. So far she has had four rounds of chemo, which the dr said she was going to have, then she would be put on some pill. Well the four rounds are up and we were wondering what was the next step. The PA asked us after we told her what the dr told us "Do you want to do a ct scan?"  I was like, I'm not the dr. I am just telling you what he said. So she has a scan scheduled for 1/10, to see is she stll needs chemo.

We feel like we dont have a clue what there goal is. From reading other peoples experiences on here I think she has a pretty good shot at going back to work, going into remission, having a somewhat normal life. .But listening to that dr. office you either get no info or doom and gloom. I dont think my wife would ever leave there, it it was me, I would probably be going for another opinion. It is very frustrating to me. I think I will tell the dr at her next visit we dont want to see her again. Thank you all for letting me rant. It helps a great deal.

rogina2336's picture
rogina2336
Posts: 188
Joined: Apr 2011

Sorry to hear that your PA is so insensitive.  My DH has been on chemo since Dec. of 2010 and has slowed down some from work (farming and trucking), but has worked everyday since his diagnoses.  No one (even Drs.) can predict how the body will respond to chemo and in time could very well become able to surgically remove the tumors.  My husband was deemed inoperable and still is with 65% of his liver compromised, but still has a very good quality of life, hang in there!!!!  Kim

annalexandria's picture
annalexandria
Posts: 2263
Joined: Oct 2011

to a communications workshop or two.  Many patients, even those who are stage 4, can have a successful response to chemo, shrinking the tumors to the point where surgery is possible.  A good surgery, with perhaps some cimetidine thrown in to reduce the chance of further spread, can lead to a cure, or at least a decent period of remission.  So I don't think the PA's take on things is entirely accurate.  Hugs to you both~Ann Alexandria

Brenda Bricco's picture
Brenda Bricco
Posts: 556
Joined: Aug 2011

My husband's doctor's PA said to us that surgery wouldn't ever be an option because trying to go after the tumors is like "trying to weld a rusty car". Since then he had RFA, liver resection (65 %), colon resection, illestomy put in and take down and is NED at this time. I don't like his doctor in our small town because he is so negative about my husband being cured. He ordered a scan back in November that was clear so he told us to go home and enjoy this Thanksgiving and Christmas as if it was not going to be this good next year. I have asked my husband to quit this dr but he says he feels that he took a part in saving his life because he ordered the chemo that shrunk the tumors. The day that we asked for the referral to the Univsersity he said to us "I want you to know I still think it is a long shot", we went anyways.

These people are in a position to emotionally hurt or destroy hope in many people, they need to be called on bad manners. We are not asking for false hope, we are asking to not be given up on.

My advice to you would be to seek out other opinions and don't give up.

GOD's blessings to you.

Brenda

PS. My husband's liver was very involved, hence the 65% resection after shrinkage and RFA.

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

in july an onc who was covering for my onc who was on vaca, told me i had 2-3 months to live even if i did chemo. ( he also rx the wrong chemo!) well i am still here after completing 12 tx of folfiri plus avastin. and overall i feel good. i went to ohio state u, university of cincinnati medical center & talked to my onc when he returned. after all the scans & etc, they all agreed on 12tx, with scans after 6 tx,  then surg soon after the 12th tx. all of them were shocked about the onc saying what he did. they have felt i have a good chance. the scans after tx 6 showed all cancer reduced by at least 1/2 of the original size. i have 2 abdom., several peritoneal tumors & they think  the rt ovary. i did have a tumor on the liver but it is gone! i will have surg in feb. i joined this board right after i got the news from the 1st onc. and the people on here really picked me up off the floor. as many of them have said "no one knows when you will die". if i would have done what the 1st onc wanted me to do, i would not be here. you need to get more opinions! good luck on your journey.

hugs

judy

marbleotis's picture
marbleotis
Posts: 492
Joined: Mar 2012

Call the Onc and let them know what was said to your wife and find another Dr.  A big part of moving through this illness is a great Dr and a great relationship with that Dr.  Please find that combination and you both will feel much better.

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

I would definitely tell the doctor what happened and refuse to see that PA again. I do not believe what she told you was true. Very unprofessional!

 

*Hugs*

Gail

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

I am sorry you had this experience.
Report it.....so wrong

LivinginNH's picture
LivinginNH
Posts: 1306
Joined: Apr 2010

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