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Done stewing.....

camul's picture
camul
Posts: 2096
Joined: Dec 2010

Had appt with palliative (pain dr) 10 days ago.  Didn't quite know what to think.  Even with Promethazine, I get nauseated now from Fentanyl patches, started beg of June.  Dr. adv Zyprexa for the nausea.  I said no.  My mom was on this and se were granmal seizures and TIA's, I am not comfortable with it.  Dr. insisted I am mistaken that no dr. would put her on it following a stroke. I have the paperwork in her file here, it was Zyprexa.

Again she said I was mistaken, well mistaken or not, I am not taking it.  Then she said maybe if I wasn't so worried about se, I would have stayed on the Tamoxifen in 2002/3, and may not have ended up with mets.  That I have to weigh out the benefits over the risks.  Tamoxifen was stopped due to debilitating headaches, I get migraines, these were pressure headaches behind the eyes and I was unable to work (on cpe 10-12 hrs a day).  Dr. said it was toxic to my system and stopped it.  Headaches stopped almost immediately and I lost the water retention. 

Same in 2010 when diagnosed w/mets only lasted 6 months again on Tamoxifen due to severe headaches and water retention, same onco stopped it again. Was put on Evista this time, w/ no se.  Evista was stopped because of the blood clots.

DR. asked why 'I' stopped the Herceptin, Celebrex, and Afinitor/Ernestamine{sp}.   Said Insurance stopped Herceptin and Celebrex, and Dr stopped Afinitor due to allergic reaction.  It was the oddest visit.  I have never tolerated pain meds, and it has gotten worse, but I didn't make the call to stop them, the Dr. did. 

I felt like she was saying I caused the mets.  She then asked what will we do as the pain progresses if I cant tolerate the opiates?   ADV the nausea from the patch only started after I was in the hospital with the blood clots May/June.  Then she asked if there was anyother med that was new at the time besides the Coumiden.  I said yes, Adavert for Vertigo....  Well this changed her tune, said that for some reason when you have inner ear issues, and are on opiates, it can cause the spinning, dizziness and subsequent vomiting.  So she has me taking Adavert now an hour before putting on a new patch.  I have done this with 2 of the last 3 patch changes.  It really helped!  However, as I was walking out of her office, she again told me she thought I was mistaken on the meds my mom was on.  (I was her caregiver).  So I called my sister when I got in my car and asked what med mom was on when we moved her to Northern CA.  Right off it was Zyprexa, and my brother who came in from AZ that night (he was living here when she had the strokes, said Zyprexa.  So she is sending me a copy of her meds from the nursing home there to bring with my next appt. . 

I was so upset, I have questioned the Tamoxifen since stopping it in 2003 and getting mets in 2010. So it was really a blow for a Dr. I like to insinuate that I may have caused my own relapse.  With all treatment stopped other than pain meds, much less to have a Dr. whom I like, saying this.  Even if they think it, why would anyone with any ounce of empathy even bring this up at this point in my life!  I am terminal, and have 2 out of my 3 drs. who feel I need to be on hospice.  Why would you even say this almost 12 years after the fact.  I was so hurt and pissed....  my kids said they would go with me to all my upcoming appts, and reminded me that being doctors means they were smart when it comes to medicine, not smart in the area of sensitivity!! 

Double Whammy's picture
Double Whammy
Posts: 2320
Joined: Jun 2010

so I'll stew for you!  Tamoxfin is a good drug, but even if you'd been able to tolerate it, it doesn't mean it would have prevented a recurrence.   It is not a sure thing and to imply that you are to blame for your recurrence is cruel.  There I said it!   She's mean.  And she's supposed to deal with folks needing palliative care?  Really? 

One of my good friends didn't take Tamoxifen at all just because she didn't want to (she was afraid of side effects and might not even have had any), and she has not had a recurrence.  10 years later, still cancer free.  I have another friend who was HER-2 positive back in the day when Herceptin was used only for recurrences so she didn't have that at the time of her dx.  She also refused chemo!  She's doing well without a recurrence 9 years later and they told her she'd be dead in 4 years without chemo.  She did take Arimidex.    Then I had another friend who did everything she was supposed to.  Her breast cancer didn't come back, but she got pancreatic cancer and died.  Tamoxifen didn't help the rest of her terrain from growing cancer!

To imply that she is so smart that she knows what would have happened had you been able to complete Tamoxifen, then Herceptin, then blah, blah, per her criteria, is wrong on so many levels.  She can't possibly know.  I hope you are not beating yourself up over her insensitive remarks.  It does sound like she listens, but she should learn to keep her mouth shut sometimes.  I'm glad she listened enough to "fix" your nausea problem, at least.

I hope she never has to experience the side effects of the drugs she prescribes but sometimes I think experience is the only way a physician can understand how it feels to be on the other end.  I just read a paper from a couple of urologists who had prostate cancer and how it changed their attitudes and empathy toward their patients.  Sure, we're all so glad to have drugs and procedures now available to help us, but they do all come with a price. 

Good luck, Carol.  Sorry you had to experience this insensitivity.

Suzanne

fauxma's picture
fauxma
Posts: 3542
Joined: Dec 2008

You have to remember that you stopped the tamoxifen because the side effects were creating problems that affected your quality of life.  Cancers recur and mets show up even when we follow all the advice, do all the meds, take all the chemo, do all the rads.  They will show up in one person who does it all and not show up in someone who choses to stop parts or all of their treatment.  So don't beat yourself up and don't let her make you feel that you brought on your own mets.  And ask yourself, would you have wanted to go through all those side effects for 10 years.  They sound like they were making your life miserable.   I am sure she wants the best for you and pain management is so important in hospice but she does lack bedside manner which is always important in a doctor but even more so with a hospice doctor.  For pities sake, she is supposed to easing not just the physical pain but the emotional pain as well during this time.  I would definitely bring a family member along to future appointments and I would show her the paperwork that shows what your mother was given   I don't blame you for not wanting a med that causes seizures and strokes.  I am glad that she found something to give you to ease the nausea.  Couldn't she have accessed your hospital records and found out what they gave you? 

I hope that her bedside manner improves as you sound like you are satisfied with her otherwise.  My prayers and kindest thoughts are with you. 

 

SAvent's picture
SAvent
Posts: 51
Joined: Nov 2013

Im sorry to hear of the insensitivity of this Dr that you like. I know it can be rather disheartening and can come off rather callous considering that you are the one that has to live with those decisions. I can only hope that although her delivery of the comment was not good that maybe her point was for you to consider things differently in future decisions and not meant to "rub in" things from the past. Either way try to take the bitter taste with a grain of salt and move forward with what you have to face now.

BUT here is what was jumping out at me as I was reading your post. It seems like this doctor is basically trying to tell you that there is no way your mom should have been given the meds she was given. Try to ignore "how" she is saying things to you and try to examine "what" she is saying to you. Her insisting that you are wrong about the prescription would make me wonder if the doc who gave it to her was terribly wrong. Maybe this doc (once you show her you are not mistaken) can give u some insight. What if there is some kind of malpractice or something yanno.

I know its easier said than done but try to forgive her lack of bedside manner and just absorb the information.

Good Luck with your fight & dont sweat the small stuff.

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I am boiling mad for you!!!! The  nerve of that doctor!!! I HATE when I tell medical UNprofessionals something and they poo poo me and say I am wrong. And for a dr. to treat you like that when you are getting palliative care!!!! She should not be dealing with patients in your situation.

You should have doctors that are knowledgable as well as caring and with an impeccable bedside manner. Being a doctor is not all about knowing facts. A doctor also needs to be able to know how to conduct themselves with patients and caregivers!!! THAT is part of their JOB.

Is there anyway you can switch to a different doctor? My blood pressure would go sky high thinking about her, seeing her, etc.

You deserve such better, caring treatment. Like I said, knowing how to relate with patients and caregivers is part of the job as well.

You can tell that dr. that I said she is a horrible beast, a pompous ass, and WRONG (regarding your mother).

VickiSam's picture
VickiSam
Posts: 8320
Joined: Aug 2009

My mouth is opened, and my blood boiling  ... 

My only suggestion - switch Doctors, and if this is not an option - take someone with you next time(chances are -- Doctor will not be so blunt, and unprofessional) I would give her a piece of your mind.  I would be calm, but direct -- not sugar coating anything.

Let your Doctor know what your needs are, what you expect from her - as well as 'how you expect to be treated' as a patient.

Best of Luck my dear dear Carol.

Strength, Courage and Peace I pray for you.

Vicki Sam

 

 

 

SIROD's picture
SIROD
Posts: 2189
Joined: Jun 2010

I began tamoxifen a week after my last chemo in March 1995 and for the next 4 years took the pill faithfully until March 1999 when a tumor was discovered in my axilla.

In October 1996, I had a bout of cellulitis in the arm that the nodes were taken out.  I asked if this could in any way be related to cancer the answer was "no" from my oncologist and then primary care.

In January 1997, I went to see my surgeon due to hernia problems when he notice my arm was as red as a lobster claw.  He immediately put me in the hospital.  I ask again, could this be related to cancer and the answer was "no".  The doctor that release me wasn't my surgeon but another from the hospital and again asked the question "no" was the answer.

I was very careful not to have a papercut, or pin prick or anything that could again cause cellulitis.  In November 1998, it happen.  I went to my surgeon and once again was in the hospital, same thing and I did go see my new primary care doctor (still have the same one today).  No cellulitis wasn't related to cancer.

This time the pain didn't go away.  I had a ct scan that showed a tumor and then had a needle core biopsy with an ultra sound which showed the tumor to be ER+ and PR+.  They told me to stop Tamoxifen after 4 years of being on it.  Cellulitis was caused because the tumor blocked the lymph and bacteria backed up.  I also ended up being stage 4 with ribs being involved.   

So there is no guarantee that taken Tamoxifen will keep you from going to stage IV.  Why not print these post out and explain to your doctor that your stopping Tamoxifen did not cause mets.  At some point before your surgery to remove the tumor in 2003, a cell went into hiding and woke up in 2010 to cause the mets you have now.

Best,

Doris

sbmly53
Posts: 1481
Joined: Jan 2010

I am so sorry that you had such a frustrating appt. it might be a good idea to have someone come with you to see if she continues the attitude.

Big and tender hugs for you, Carol. You are always in my thoughts.

 

Sue

 

Barb A's picture
Barb A
Posts: 101
Joined: Jun 2009

Wow, my jaw dropped when I read your post! I was on Tamoxifen for five years, off for two and had a recurrance in my reconstructed breast. First time was DCIS, second IDC. I am on my third onc, only because I had to switch insurance. This onc said my report from my first cancer said I had some IDC. I was never told this before. So, the theory is that a cell with IDC was left during my surgery and developed the second cancer. I didn't have chemo or rads the first time around.

I tell you this because we make the choices that we feel are best for us at the time. I took Tamoxifen and still had the recurrance. Had I had chemo and rads, maybe it wouldn't have happened again. Who knows. Your onc is insensitive when she implies you caused your recurrance.  If it were me, I would tell her so, but I'm rather blunt about those things.

Know that all of us here understand the choices you have made. Don't second guess yourself - it doesn't provide the answers anyway. Instead, spend your time celebrating who you are and enjoy your family.

My thoughts and prayers are with you,

Barb A

camul's picture
camul
Posts: 2096
Joined: Dec 2010

I am kind of back there. I have been talking to my family and I maynget another opinion. This dr is my new pain management one. I agree with my conco and the other 2 I saw in the hospital that my body wont tolerate more chemo, so and after 2 1/2 years of weekly chemo, and noe 6 months just treating the pain and thick blood(blood clots), I am looking into the local chemo hosp/dresearch center to see if I might qualify for any of the immune trials. Most call for it as a first line treatment so I am not eligible for those, and others work with chemo, and my system is cheo'd out. Kept getting infections then blood clots. So I am limited. I love my onco, and know he has reached his limits as far as what he can safely do treatment wize.
I know too many who have been on Tamoxifen who have had recurrances and/or now mets, so I cant let that interfere, at this point I just want to feel better. They have suggested ritalin in am and sleeping pills to go to sleep at night, to tey and help with the ftigue. Monday I have the sleep study to see if I am getting enuf oxygen when I sleep. They noticed while in the hospital that my bp drops as low as 60/40, but more of an averge of 70/40,as soon as I fall asleep. Think I may need oxygen at night and that may help wih how I feel in during the day. We will see.

Thanks for supporting this, I was floored!
Hugs,
Carol

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