Just had MO appointment
what an overwhelming appointment. Nurse navigator, NP, social worker and then Dr.
it hit me pulling into the parking lot, right by the Cancer Center sign. When nurse navigator asked some cancer questions the tears came. The NP came in, was very "stiff" but okay. but the Dr?
He flaly refused to work with me. I had questions and had done a lot of "research" so I could ask smart questions. He basically marched in the room, said Tamoxifem and that was it. I asked about Ais (I am older, post meno, have arthritis as well as a few other issues) He said they would not work, etc etc. I expressed concern over side effects...he asked where I got info and I said breastcancer.org. he said it was not a valid site. WTF?
I tried to be understanding, saying I realize I don't know how I am going to react...asked about a low dose to start..NO! He finally said an AI, one not on my list, but it would give me joint pain. That would disable me more with my arthritis.
he also refused to work with me regarding my hearing loss.
I know I am spoiled by having such a magnificent surgeon...I know this is all a whirlwind and has hit me hard...but has anyone else had a **** MO?
I hope next appointment I only have to deal with Nurse Practitioner........
I can't change, it's a small center with 3 drs. He is the head of the dept.
I am emotionally drained......and feel beaten down.
I have radiology on Friday. I can only hope they are decent. but right now I doubt it.
So, vent aside...please tell me POSITIVES about TAMOXIFEN....
thank you guys...I so know this could be so much worse.........but...
Comments
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I have been on Tamoxifen for 14 years without any side effects and most importantly it worked for me..hope this information helps you .
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I send you a DM but I just want you to remember that if there is actually another MO in that office it is within your right to switch. That doesn't mean you will get a different opinion on what drugs to use (although I would hope you might) but your MO is a doctor you will see for probably at least 5 years. (My MO who can be a bit of a ditz at times when it comes to scheduling is anything but when it comes to meds. She had three different plans of possible meds to discuss with me from the start and her reasons for each. That's why I stayed with her in spite of the scheduling issues ). In the end you have to do what works for you. If you feel you are okay with him then that's up to you BUT you can decide tomorrow or next week or 3 months from now that he is NOT someone you want to put up with. You do not have to be bonded with him for the rest of your treatment if you find he isn't meeting your needs (he can be a pain in the butt but if he is meeting your needs then that's one thing but if he is a pain and NOT meeting your needs and you can find another choice that's okay too). HUGS to you and hoping for a better connection with the radiologist.
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I’m sorry to hear you had such a rough appointment. I agree with the post above that you should look into the possibility of switching doctors if one of the other doctors is a MO. I’m comfortable with my MO, but my RO was similar to your MO - rude and condescending. I never went back to my RO for a follow up since I so disliked her. However, since you will be seeing the MO for at least 5 years, it’s critical that your needs are being met.
Did the MO explain why Tamoxifin is recommended vs. an AI? If you are post menopausal, an AI is typical although it’s not unheard of to take Tamoxifin if you are post menopausal.
I’m not clear what you meant by the MO refusing to work with you regarding the hearing loss. It’s very important that you hear and understand your treatment plan. A good doctor will understand this. Could you reach out to the NP or nurse navigator with your concerns? I will say I’m envious that you have a nurse navigator as that was not offered to me and I think it would have been very helpful in facilitating appointments and communication between the various doctors.
Best of luck and hopefully the radiation appointment will go smoother.
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Thank you Harley. crap like this just adds to the darkness on this path. I hope I will be seeing the nurse practitioner mostly for appointments and not the MO. She was stiff but I think she would listen better and explain. and no, the MO seemed to have a rote speech. said DCIS is not cancer (I have seen it referred to as pre cancer) he did not explain tamoxifen...it's what is done end of discussion. I am post menopause.......I do have arthritis and am concerned about joint pains but there are several AIs, right? he seemed to not like that I asked about AIs..there were no options there was no discussion this is what you're doing. I think he's old school. I did connect with the social worker as much as I didn't want to but someone had the good advice to take advantage of what ever is offered.
the nurse navigator started the appointment with questions and taking vitals. I'm not too clear on her role but I did email and connect with her. same with social worker so if I need help I can try to ask them. thank you for your response. this site is like a lighthouse in teh fog
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make use of the social worker please. I know some people get scared off by the title sometimes and also the idea of needing help somehow means are helpless and weak BUT I think a smart strong person makes use of their resources and I KNOW that’s who you are.
I think I said this to you but I mentioned once to a Dr that sometimes I feel like a cancer patient imposter because it was DCIS and as she pointed out. If you are having surgery, have radiation suggested and are being advised to take a med you are dealing with the same treatment plan. As my breast surgeon said, as a whole DCIS is probably over treated but for most people the idea of wait and watch vs just get it out of me one is more stress inducing so they go with the other.
If all you did was have surgery with no additional suggested treatment I think the idea of calling it precancerous might seem more natural and maybe someday there will be a way to determine if DCIS in an individual is more or less likely to become more serious and not everyone will get the same suggestion on treatmentI know I’m rambling I think the hardest part from a doctors point of view is that they see so many patients and so many that have a more serious condition that for some it’s hard to grasp that no matter what the prognosis of a diagnosis is that the patient still is getting information overload. Some just don’t do a great job connecting with certain patients even if on another day they might and like most of us saying things like don’t worry or don’t stress or you are lucky because it’s only ….. doesn’t make us instantly go okay now I’m all better and not stressed
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hey, your oncologist sounds just like mine! When I asked why tamoxifen she glared at me and said it’s the only treatment recognized for DCIS in Canada. Even though I had a micro invasion, she shrugged that off. It’s just tiny, she said….ok…
Just a miserable person….
I took tamoxifen for four months, developed diabetes even while eating a low carb, sugar free diet. Apparently that’s a real side effect for women over 65, a 20% increase. Stopped tamoxifen and continue to monitor my diet and hoping my next A1C is lower.
My surgeon, on the other hand, is a gem! She listened to all my concerns and empathized. I see her again in a few weeks just so she can see how her surgeries look…and they look darn fine! Looking forward to her reactions to my decision to stop the drugs. Love my family doctor too, she’s my biggest support
Do take care and I hope you find someone to at least just hear your concerns.
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This MO insisted it is not cancer...I know old school thought was pre cancer....but my pathology reports say all the right cancer words. and the papilloma was cancer which I guess they are normally benign (I'm stage 0 grade 2)
It all just adds to this messy path through the haunted forest. sigh
I hope I have more luck wit the radiologist at least someone who will listen and is up to date.
Thank you for your words.....I consider it all and find little bits of strength to help me not give up
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Maybe Dr A is very good for more complicated serious cases. But I did see some online reviews and everything I experienced were the common complaint.
I am trying to keep an open mind but goodness this is overwhelming.....
I worry about my Husband too as he only has capacity for "caring' to a point. so I am trying to hold back emotions from him. I really have no one else so this place means so very much
thankyou
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You really need to either try a different oncologist at this practice, or get a second opinion (with the un-stated intention of switching). Reaching out to the nurse navigator is a good suggestion too. It is important, especially with cancer treatment, to have a dr. that listens to your concerns and adequately explains treatments/ drugs.
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Thank you all for the guidance. I have spoken with teh social worker and she can help me switch to another Dr. I will give this MO one more try..my next appt is Jan 24 but if it's the same attitude I will switch. Its difficult to do but you guys are right...this is not an over and done thing...this is years down the road.
Wishing everyone comfort
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