uncaring oncologist
I asked how we would find out if the chemo worked, he said we couldn't. I asked if I should get any scans or tests, he shrugged and said, "Well you should get a mammogram for your remaining breast sometime." Big quiet pause. So I said, "That's it then?"
He said "I'm writing you a prescription for Tamoxifen." I asked if there were any alternatives, he said no. I said "I would like to discuss the side effects", he said "Side effects are rare". I said "According to lots of studies there are serious side effects from Tamoxifen."
Another big pause. He said, "If it were me, I would want to survive." I said (about to lose my temper) "Of course I want to survive! But I care about the quality of my life." Then he said- "I don't. Survival first, quality second."
That took me aback a little. But I thought, he is a drug guy, that's what he does- dispense drugs. My quality of life is up to me, and he honestly is not concerned.
He then went on to tell a story to illustrate that women exaggerate their symptoms and can't be trusted to report truthfully about their experiences on Tamoxifen. I told him that the only way I found out the truth of what chemotherapy would be like was from the women online who are speaking bravely about their experiences, I didn't get any good information from him. I was so angry I almost cried, but I held it in.
Finally he finished with his big pitch- the 50% recurrence reduction for women taking Tamoxifen. But the chart he handed me showed something else- it showed that the 50% recurrence reduction is only applicable to 7 out of 100 women (in my situation) that take Tamoxifen. 93 out of 100 women (in my situation) who are taking Tamoxifen are getting no benefit, only side effects.
?????
So, I have decided on surgical ovarian ablation/diet/exercise/supplements. My oncologist can only give me drugs. I need to get off of this medical wheel and head back to health. However short my life might be, it is going to be sweet.
I have lost a breast and gone through chemo hell, now I will get rid of my ovaries. And I'll be damned if some guy who has never been through any of this is going to make me feel like I'm not brave enough or smart enough.
Another rough day full of terrifying decisions.
Comments
-
Just my opinion, but I would
Just my opinion, but I would find a new doctor. We have enough to go through and don't need an uncaring doctor to go along with all of it.
So sorry that this happened to you.
We are all here for you.
Big Hug,
Wanda0 -
you are rightLighthouse_7 said:Just my opinion, but I would
Just my opinion, but I would find a new doctor. We have enough to go through and don't need an uncaring doctor to go along with all of it.
So sorry that this happened to you.
We are all here for you.
Big Hug,
Wanda
He is 1 of 3 oncologists in my area, they share a practice. I will have to get to the next nearest place (about 1 1/2 hours south) but I don't drive. I do have an old car, though.0 -
wow
About the time he started his speel about woment exaggerating thier side effects I would have asked him how many times he has had the drug for his cancer? They are the experts about cancer. We are the experts on what is occuring with our bodies. If they haven't lived it they don't know.0 -
Can you find another
Can you find another oncologist in your area? I cannot even wrap my head around the fact that he said he doesn't care about the quality of your life! Doctors, no matter what their specialty, are supposed to care about the whole patient. By reading your post I realized how blessed I am. They are not all like this. I had the first visit with mine about 2 weeks ago and when he was asking me questions about my history he even asked how long DH and I had been married, if it was my only marriage and how our children were handling the fact that I have BC! You are going to have a long relationship with your onco so I hope you are willing to find another one.
(((((HUGS))))) to you, who has gone through way too much already to have to endure this kind of emotional treatment on top of it all!
Nancy0 -
wow...I THINK I would look for new doctor
Ask around and find someone who used/uses new one personally...word of mouth is the way to go. My mom saw my ONCOLOGIST (she did not have cancer-she has Platlet issues) but when my cancer center (radiation) suggested her I went to her since my mom liked her and I had met with her many times in regards to my mom.
I wish you luck...YOU must feel comfortble and TRUST your Dr...
Denise0 -
same here
I could have written this EXACT same post myself Em. Seriously, I was logging on to update about my disappointment with my oncologist regarding this pain i'm having & tamoxifen & it's side effects. What I'm doing today, is calling around to the women in my Young Survivors support group, and getting a few oncologist references. Then I'm going to get a second, maybe even 3rd opinion. I'm on tamoxifen and having terrible side effects. I've been having this excruciating pain in my joints. TWICE this week i have been to see my oncologist about it. Twice he told me it couldnt be tamoxifen. Ordered up extra blood work to test for lupus & rheumatic arthritis -came back normal. I've been literally crying for 2 days, after having this pain intensify on me. I called my onc yesterday about it, and his response was "I dont know what's causing this, and I can't help you with it. You need to see a pain management specialist." Even though I called there to tell them that I was in severe pain, that the combination of ibuprofen + tylenol that im taking is not only not controlling the pain, but im taking 20+ pills of them a day, which doesn't seem healthy to me. So the nurse tells me they'll set up an appt with this pain specialist. I got a call back from them this morning with my appointment - for more than a MONTH away. So it's ok with MY doctor that his patient suffer tremendously until then? I didn't take my tamoxifen last night. Is it a coincidence that my pain has improved by around 50%? I'm so sorry you're going through this. I've had the week from hell this week & i hate the thought of you feeling like that too
please talk to another oncologist. We deserve to be treated with at the very least, respect and dignity. i'll definately keep you updated on what's going on with me. I also want to find out about just having my ovaries removed, or even just having everything taken out, what that will do to improve my risk, what, if any drugs i would need to be on. Because if it's the tamoxifen that's making me feel so terrible -I cant deal with it.
*hugs hugs to you*
Heather0 -
Absolutely FIRE the DUDE...He's NO Doctor!!
Ugh! I cannot tell you how angree I am after reading your story! PATHETIC!! He has NO BUSINESS calling himself a doctor! I'd be on the phone setting up an appointment with someone else pronto!!
However...I must say...and this is just my opinion...I'd maybe think through the ovary ablation. I was presented with that choice as well as the Tamoxifen choice (and this was 10 years ago). My surgeon and oncologist (both very caring and wonderful by the way) sat with me and talked about the pros and cons of each choice. Ovary ablation can cause it's own set of side effects and problems as well, not to mention all the potential problems that could happen when undergoing a major surgery.
Though Tamoxifen has some side effects, they are manageable. And...Tamoxifen has been one of the most studied drugs ever. It's been around for 30 years. If you have side effects that you can't handle, you can always choose to go off of it.
Anyway...I'm sorry you had such an ARSE for a doctor. You have to do what you feel comfortable with. Just make sure you have all the accurate information for both types of treatment. There is a lot of misinformation out there. It's the first time I ever heard the statistics that you stated. Wondering where that came from?
Anyway...wishing you the best in your journey towards QUALITY of LIFE!!:)
Blessings,
Sally0 -
Em and Heather, both fire
Em and Heather, both fire your oncologists and get one who cares and listens. Quality of life is a huge issue, we have lived with a not so good quality while going through treatment, once you are through, they treat the side effects (damage), that resulted from chemo.
After chemo/tamoxifen, my legs and hips were so bad, that when it rained or snowed no amount of meds could take care of the pain. Hot baths did the most but that wasn't enough. Finally, I went off the Tamoxifen (with my onco's blessing) and never went back on, but the pain was still there, so I don't really think it was the Tamoxifen. I think it was the chemo. It took a long time for my joints to heal.
Now that cancer came back with a vengence, I do question my decision to go off the Tamoxifen. But I can only go forward. I have been on Tamoxifen for 7 months and have the leg and joint pain, but it didn't start till I started the Zometa and chemo.
Get a good doctor. A 1 1/2 hour drive isn't so long when you only need to see him usually 2x a year unless you would have complications. You can still get your mamo's locally and they can fax the results to your doctor anywhere.
You don't have to love your doctor, but you do need to trust him/her and be able to talk to them.
Wishing you both the best.
~Carol0 -
My Experiencecamul said:Em and Heather, both fire
Em and Heather, both fire your oncologists and get one who cares and listens. Quality of life is a huge issue, we have lived with a not so good quality while going through treatment, once you are through, they treat the side effects (damage), that resulted from chemo.
After chemo/tamoxifen, my legs and hips were so bad, that when it rained or snowed no amount of meds could take care of the pain. Hot baths did the most but that wasn't enough. Finally, I went off the Tamoxifen (with my onco's blessing) and never went back on, but the pain was still there, so I don't really think it was the Tamoxifen. I think it was the chemo. It took a long time for my joints to heal.
Now that cancer came back with a vengence, I do question my decision to go off the Tamoxifen. But I can only go forward. I have been on Tamoxifen for 7 months and have the leg and joint pain, but it didn't start till I started the Zometa and chemo.
Get a good doctor. A 1 1/2 hour drive isn't so long when you only need to see him usually 2x a year unless you would have complications. You can still get your mamo's locally and they can fax the results to your doctor anywhere.
You don't have to love your doctor, but you do need to trust him/her and be able to talk to them.
Wishing you both the best.
~Carol
It was 14 years ago and the oncologists absolutely ignored the side affects that were there trying to get women to finish the protocals set out. I can't agree more with the issues of Quality for our lives that can be totally ignored. Yet is a known fact now that there are just those of us who are so sensative to everything done to us and if there is a chance of it I sure got it.
I begged for help going into my 3 year of cancer freedom because I didn't feel any better and the pain was unreal. I took many meds and many years to get over the pain but it can be done. Doesn't mean there can't be more trouble but I have found lately that going to doctors sometimes just keeps us stuck in it and it too is stressful something I need to avoid. I am getting more lumps and they feel or don't and I go for altra sound and they say not cancerous. Life goes on though I have never felt more paralized with fear since the lumps keep coming.
I found no comfort the last year trying to get answers to my health issues and actually was told by last surgeon he truly didn't know where I went from here so not goig anywhere if that is the case. I guess all doctors think we exaggerate the symptoms but the scans I had did show many reasons for my continued health problems including that draggin leg I have had since being treated for my cancer all those years ago and was told back then it was due to menopause something I went through at a very young age.
I guess if I want quality I won't find that in the doctors office...
Tara0 -
Thank you for all of the24242 said:My Experience
It was 14 years ago and the oncologists absolutely ignored the side affects that were there trying to get women to finish the protocals set out. I can't agree more with the issues of Quality for our lives that can be totally ignored. Yet is a known fact now that there are just those of us who are so sensative to everything done to us and if there is a chance of it I sure got it.
I begged for help going into my 3 year of cancer freedom because I didn't feel any better and the pain was unreal. I took many meds and many years to get over the pain but it can be done. Doesn't mean there can't be more trouble but I have found lately that going to doctors sometimes just keeps us stuck in it and it too is stressful something I need to avoid. I am getting more lumps and they feel or don't and I go for altra sound and they say not cancerous. Life goes on though I have never felt more paralized with fear since the lumps keep coming.
I found no comfort the last year trying to get answers to my health issues and actually was told by last surgeon he truly didn't know where I went from here so not goig anywhere if that is the case. I guess all doctors think we exaggerate the symptoms but the scans I had did show many reasons for my continued health problems including that draggin leg I have had since being treated for my cancer all those years ago and was told back then it was due to menopause something I went through at a very young age.
I guess if I want quality I won't find that in the doctors office...
Tara
Thank you for all of the supportive comments!
@Tara- I guess I am starting to believe in what you say in your last sentence. I don't think the medical community is prepared to help me recover the quality of my life. I have a lot of healing to do from the chemotherapy. I will be lucky if I can ever get a normal life back. I think I'm on my own.
@Heather- I am so sorry you are having this experience. I know exactly how you feel. And it's bad. I don't know what to say except I send you big hugs and I will be thinking about you.
@sal314- I believe my oncologist gets at least some of his numbers from
www.adjuvantonline.com
I think it's a resource that a lot of oncologists use.
Another resource:
www.lifemath.net
My oncologist said I should never make a fear based decision. Of course, that is a ridiculous thing to say to a person with cancer. He thought, I'm sure, that I was afraid of Tamoxifen, and I am. With reason. But if I took it at this point, I know inside myself, that would be the fear based choice. I am so afraid to die. I am so afraid of a return of this cancer.0 -
OMG
I'm so sorry this jerk was so uncaring. You've certainly been through enough and don't need someone telling you, in essence, that you're not smart enough to make the decision for yourself.
That being said and even considering that I chose not to continue anti-hormone treatments after two tries and horrible side effects, please find another onc and get another opinion before you make your decisions. You may still make the same choices, but better to do that from a place of knowledge and caring, rather than one of righteous anger caused by a jerk.
May you find peace with whatever decisions you end up making.
marge0 -
marge,mwallace1325 said:OMG
I'm so sorry this jerk was so uncaring. You've certainly been through enough and don't need someone telling you, in essence, that you're not smart enough to make the decision for yourself.
That being said and even considering that I chose not to continue anti-hormone treatments after two tries and horrible side effects, please find another onc and get another opinion before you make your decisions. You may still make the same choices, but better to do that from a place of knowledge and caring, rather than one of righteous anger caused by a jerk.
May you find peace with whatever decisions you end up making.
marge
I sure do appreciate
marge,
I sure do appreciate your post. I am angry, and I don't want to make a decision based on that either! Thank you for a wise reminder.
I hope you don't mind me asking- when you stopped taking the anti-hormone treatments, did the symptoms caused by the treatments go away?0 -
Thanksem h said:marge,
I sure do appreciate
marge,
I sure do appreciate your post. I am angry, and I don't want to make a decision based on that either! Thank you for a wise reminder.
I hope you don't mind me asking- when you stopped taking the anti-hormone treatments, did the symptoms caused by the treatments go away?
It's not often that marge and wise are written so close together. : )
Please don't make the decisions, whatever they are, until you've calmed and had a chance to speak to another onc. There are so many post treatment drugs out there, one may work for you without the side effects.
I was on femera for seven months and had a whole list of s.e. from horrible joint pain on down to silly issues. I stopped the meds and all s.e. cleared up. The joint pain had been the worst. I'm 57 and felt and walked like I was 107. About a month later I saw my onc's nurse practitioner and we agreed I'd try anastrozole. After about 6 or 7 weeks on that I was so short of breath all the time I couldn't walk 10 feet. I have asthma but this was not asthma or anything like it. My onc did a ct scan looking for a pulmonary embolism and found nothing. Several days later I was in the er for chest xray, ekg. They could find nothing, no asthma symptoms and no one would say it was the anastrozole. I stopped taking that and in about 2 weeks I was fine. All side effects gone.
On the flip side of this, I know that Susan/Rague has been on femera from the same time I started and has had no side effects at all.
I hope you can find an onc you like who will listen to you and be able to help you come to a decsion that you're peaceful with. I know I may have a recurrence, but for me the quality of life right now was my overriding factor. I was scared the side effects might never go away if I continued.
Good luck. Let us know how things go and what you decide.
marge0 -
I just wanted to update that
I just wanted to update that today I asked around my area & one oncologist, who happens to be female and younger, was more highly recommended over others, and was said to be very thorough. I have an appointment with her next Thursday. I must have talked the receptionist's ear off when I called, but I explained to her that I'm having terrible pain, that my oncologist isn't responding to my questions, and that I'd like a second opinion regarding my post-chemo treatment. I'm not going to feel one bit awkward calling my oncologist's office to ask for copies of my medical records to take to the new appointment.
Em - please get a second opinion. We deserve to be treated with respect and dignity. I'll let you know how my appointment goes.
*hugs*
Heather0 -
good advice Margemwallace1325 said:OMG
I'm so sorry this jerk was so uncaring. You've certainly been through enough and don't need someone telling you, in essence, that you're not smart enough to make the decision for yourself.
That being said and even considering that I chose not to continue anti-hormone treatments after two tries and horrible side effects, please find another onc and get another opinion before you make your decisions. You may still make the same choices, but better to do that from a place of knowledge and caring, rather than one of righteous anger caused by a jerk.
May you find peace with whatever decisions you end up making.
marge
My goodness I think I need to put that on my bathroom mirror for a time when I am really ticked off. No one wants to make a decision without thinking purely of their own best intrests rather than spite.0 -
Heather and EmHeatherbelle said:I just wanted to update that
I just wanted to update that today I asked around my area & one oncologist, who happens to be female and younger, was more highly recommended over others, and was said to be very thorough. I have an appointment with her next Thursday. I must have talked the receptionist's ear off when I called, but I explained to her that I'm having terrible pain, that my oncologist isn't responding to my questions, and that I'd like a second opinion regarding my post-chemo treatment. I'm not going to feel one bit awkward calling my oncologist's office to ask for copies of my medical records to take to the new appointment.
Em - please get a second opinion. We deserve to be treated with respect and dignity. I'll let you know how my appointment goes.
*hugs*
Heather
So sorry you have both had difficulties with your oncs. I've said it before, being in pain is no walk in the park. I'm not sure if it's the Tamoxifen or the chemo you had. My sister took Tamoxifen for 5 years with no side effects. 9 years later she had a bc recurrence in her other breast.
Heather I wish you the best with your visit to the female onc next week. I know for now the waiting will be awful. I hope your pain subsides a bit.
Em are you looking for a new onc also??
{{hugs}} Char0 -
I think I would look forBioAdoptMom said:Can you find another
Can you find another oncologist in your area? I cannot even wrap my head around the fact that he said he doesn't care about the quality of your life! Doctors, no matter what their specialty, are supposed to care about the whole patient. By reading your post I realized how blessed I am. They are not all like this. I had the first visit with mine about 2 weeks ago and when he was asking me questions about my history he even asked how long DH and I had been married, if it was my only marriage and how our children were handling the fact that I have BC! You are going to have a long relationship with your onco so I hope you are willing to find another one.
(((((HUGS))))) to you, who has gone through way too much already to have to endure this kind of emotional treatment on top of it all!
Nancy
I think I would look for another doctor too. You need someone that cares about you and is kind to you, unlike this doctor.
Hugs to you!0 -
Fire him! You should becamul said:Em and Heather, both fire
Em and Heather, both fire your oncologists and get one who cares and listens. Quality of life is a huge issue, we have lived with a not so good quality while going through treatment, once you are through, they treat the side effects (damage), that resulted from chemo.
After chemo/tamoxifen, my legs and hips were so bad, that when it rained or snowed no amount of meds could take care of the pain. Hot baths did the most but that wasn't enough. Finally, I went off the Tamoxifen (with my onco's blessing) and never went back on, but the pain was still there, so I don't really think it was the Tamoxifen. I think it was the chemo. It took a long time for my joints to heal.
Now that cancer came back with a vengence, I do question my decision to go off the Tamoxifen. But I can only go forward. I have been on Tamoxifen for 7 months and have the leg and joint pain, but it didn't start till I started the Zometa and chemo.
Get a good doctor. A 1 1/2 hour drive isn't so long when you only need to see him usually 2x a year unless you would have complications. You can still get your mamo's locally and they can fax the results to your doctor anywhere.
You don't have to love your doctor, but you do need to trust him/her and be able to talk to them.
Wishing you both the best.
~Carol
Fire him! You should be treated with respect and kindness, not this way.
Hugs for you,
Leeza0 -
Mr INSENSITIVITY himself
You have ALL reason to be upset. For him not to recognize you alone is
unbelievable. Yes he sees a lot of patients, but he should also realize how
much trust you put in him. We put our lives in their hands for heaven's sake!
I don't know what it is about side effects... I almost think that it frustrates my
oncologist that he did not completely heal me, to a point where he chooses
to ignore my side effects. Makes me wonder if it is due to the nature of his
job. He sees so much suffering that maybe he shuts down as to protect himself
and his belief in what he's doing.
I agree with everyone on here, you deserve a caring and attentive oncologist
by your side during these trying times. If I were you I would get a second
opinion and then do what makes you feel at peace. But don't make a decision
in the heat of the moment.
Big hug,
Ayse0 -
Heather and Emcahjah75 said:Heather and Em
So sorry you have both had difficulties with your oncs. I've said it before, being in pain is no walk in the park. I'm not sure if it's the Tamoxifen or the chemo you had. My sister took Tamoxifen for 5 years with no side effects. 9 years later she had a bc recurrence in her other breast.
Heather I wish you the best with your visit to the female onc next week. I know for now the waiting will be awful. I hope your pain subsides a bit.
Em are you looking for a new onc also??
{{hugs}} Char
Heather, I am glad to hear that you are going to meet another oncologist. I did just that 1 year ago, because my #1 nationally recognized scientist did not discuss anti-estrogen therapy with me and followed a standard protocol. I left his office or fire him and have chosen a female 36 years old his former resident who sees me as a partner.
Having said it still any oncologist will consider survival before any quality of life.
Em, you doctor should not treat patients, has unacceptable bedside manners. My personal experience have shown Medical oncologists have been trained to treat us with medications only. Alternative approaches and supplements can be found in other places. Please seek a second opinion.
Scan are not recommended if you do not have pain. Plus insurance does not approve then on regular basis if you do not have tumors.
You can try medication and see if it woks for you. Not everyone is having side effects.
Hugs,
New Flower0
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