Canceling followup appointment
Are any of your tempted to cancel your 6 month followup appointments with the oncologist? I am seriously debating doing just that. The oncologist I have now is the better of the three I've seen but that is not saying anything great about any of them. He gave me the clean exam/no findings in June and then at the annual mammogram, suddenly the radiologist is all concerned and multiple views taken, then an ultra sound, and 2 days later a horribly painful stereotactic biopsy that left me with a hematoma the size of a pool ball. All that upset and it was actually normal. I cannot bare to go through this every six months. I cannot submit to biopsy after biopsy for years on end. They have never found anything on the physical exam, only with the mammogram. I do NOT get any feeling of reassurance when I see the oncologist. I come away depressed and mad. He doesn't want to hear about my continuing pain and side effects from Tamoxifen. He doesn't care that my hair is falling out and that is really disturbing to me. I'm trained as a Medical Technologist and I have no desire to EVER be in an office that says Hematology and Oncology on the sign. What are they going to do to me if I don't go back? Aren't there ever patients that say they can't handle it any longer and just punt? The worst thing that has ever happened to me in my whole life was this diagnosis and I have been treated the worst by the medical community, which I am part of! I want to live or die on my own terms, not those dictated by some unfeeling ghoul!
Comments
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Kay-
I cancelled my follow up appointment too. The doc wanted me to have a blood test and chest xray and I decided that I didn't want to do it. My reason is that if the tests reveal something, I don't want to do the treatments. I don't want chemo, I don't want radiation and I don't want more surgery so if I find out something is wrong, it will make me crazy. I want to live and die on my own terms too, so I know what you mean. I have put a lot of thought into this and have decided that no more tests is the right choice for me.
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My husband is tired of dealing with it all. I have no support here other than him. His job is very stressful and he makes good money to pay for health care, that I basically don't even want any more. If I go in, I will just be lying to them. I can not take another appointment where I say what my concerns are and they blow them off. It is demeaning to have some man that you don't even like doing an exam and god forbid you say you still are in pain 2 years later and his eyes glaze over. How in the heck do you handle that? I guess I must be a really terrible person because my brothers did not rally around me and the friends I thought I had suggested praying at the cure or didn't seem concerned when I wasn't "all better" in a short amount of time. The ones that demanded that I was an idiot if I didn't do chemo abandoned me months ago, before I even had a firm diagnosis. Too many stupid people who don't really know anything putting in their 2 bits. Yet I have to listen to hours and hours of complaints about other medical conditions that aren't even life threatening but a little inconvenient. It's crap and I'm tired of it and no support.
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Hi Kay! Oh...I have had those thoughts too. I fired one of every "professional"...that includes onc, surgeon, plastic surgeon, radiologist....I felt like it was me too...but it wasn't, I was a good advocate for myself and I pushed on to find the right care. I went through all of it, chemo, double mastectomy, radiation, hysterectomy...I have 3 kids and feel like I have to do everything I can to stick around for them...but I live with a feeling of cancer doom, like it is going to get me right around the corner. I totally go through massive lows waiting for test results! It is awful. I can only imagine where you are coming from in your decisions. Do what is right for you...but you could also fire the team and find a new one! Maybe a holistic approach?
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Hmmm....interesting. My breast surgeon has ordered my followup mammogram and ultrasound (happening on Friday). It makes more sense to me than having an oncologist order it. My radiation onco knows that my breast surgeon will follow up, so I will go for a six month followup then be done with him. I'm trying to figure out why my primary care physician can't order the appropriate bloodwork and follow up rather than the oncologist. I have diabetes, so I already see her every three or four months. And my copays for a PCP are half the cost of a specialist. I'm going to have that conversation with her and see if she's willing to follow me. It would be far more convenient. I'm not quite ready to sever ties with the BS - I really like her and she likes to see her patients quarterly for the first year.
Like everyone else, I don't need constant reminders!
Michelle
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Michelle - actually, according to the ASCO guidelines, you can transfer to your GP after one year. I tried this a year ago, when I had passed the one year mark and the female GP acted like I was crazy for asking. I tried to show her the guidelines and she wouldn't even look at them! I wasn't making it up just because I HATE the oncologist. It is not stressful to go to a regular doctor but going into an oncologist's office, you don't know what you will see. If I'm selfish, then I'm selfish but I don't want to see someone who is in really bad shape. When I was sitting in the first oncologist's office waiting room, a woman came in who had the "chemo" look. She didn't have any hair, blotted face and abnormal skin color. She proceeded to talk loudly of continuing to fight and taking every drug that is available, even though she mentioned multiple mets in her body. I felt like this doctor was going to treat her "to death" just for the money. And I guess I was right because then she started talking about how much it was costing. I worked in a medical laboratory and have seen many patients just weeks before they passed away. I quit working in that field because I emotionally could not handle this on a daily basis. It is hard enough to drag myself into the oncologist's office. I don't want to be confronted with what will happen if everything goes wrong. The oncologist is NOT doing anything magic at these followup appointments! A GP can order the same tests that an oncologist does - I know because I ran a medical lab. As you mention, its at least twice as expensive to go to a specialist. How are we ever going to get a reduction in health care costs if everyone runs to specialists all the time? If we don't question anything, the oncology "machine" will just keep eating up our health care dollars. Just because something is covered by insurance, it isn't "free"! Somebody is paying through higher premiums or higher taxes. Here is a link to the guidelines so you can print them out. Maybe your doctor will actually look at them! Guess I need to go shopping for another GP too!!! - Kay http://www.cancer.net/patient/Publications+and+Resources/What+to+Know:+ASCO's+Guidelines/What+to+Know:+ASCO's+Guideline+on+Follow-Up+Care+for+Breast+Cancer?sectionTitle=Recommendations&sectionId=101150&vgnextrefresh=1
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I too have the same thoughts. I just cancelled my next appt with onc. I hate that place. I'm willing to have my labs checked every 3 months like they want, I'm going to get a standing order from the radiation doctor next month when I see him, but after that I have decided I don't want any more appointments, expensive co-pays, etc. I'll have my mammogram/MRI that the breast surgeon is ordering but that's it. I hate tamoxifen and the side effects and am trying to make the decision whether to stop it and take my chances. It feels good to feel in control whether the decisions are right or wrong, they are my decisions to make.
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Jayne - I caved in and went but wished I hadn't. He was a poop (I'm using a nicer word than what I actually call him) again! My husband was having a horrible week at work so I went by myself. I just sat there like a lump because I was afraid if I asked a question or commented on anything he would fire off on me again like he did a year ago. Have any of you ever had the doctor dictate his notes into a tape recorder while he was sitting in front of you? That's what he did this time. I thought it was RUDE!!! It made me feel even more like a disease and not a person. Guess what buddy, I got an A in my Medical Terminology class at KU Med Center. I know what the big words you are saying actually mean. I about laughed out loud when he said that, "the patient is tolerating the Tamoxifen well." Boy is that a joke!!!!! I told him a year ago that I wasn't and at the June appointment also. Just because I didn't complain this time doesn't mean it's suddenly better. What really makes me sick is when I see him on the TV commercials for the local hospital. He's smiling and talking to two young girls about being a doctor at this hospital. I guess I'm glad that I've seen the commercials as I wouldn't know what he looked like with a smile otherwise! Ghouls making TV commercials takes the cake, in a sad, horrible way.
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My GP is my cancer doctor now. I'm supposed to see the rad onc every year and I haven't seen him in three years. I was seeing my surgeon once a year, but he recently retired .. so it's my GP that orders the mammo and any other tests I need. I have an ortho doc for my C-spine arthritis.
I actually see my GP every three months.
Best wishes to you in making your decision.
Bren
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I've run into docs that wouldn't listen to me, too. I discovered that if I refuse to leave the exam room until I get what I want/need that I become a person (although a "problem patient" or "troublemaker") and get treated like a person and not a disease or case number. I've done this, along with phone calls to the office every 15 mintues until I get test results and a few other things, Now my chart is flagged, and I get VIP attention every time I call or have an appointment. Sometimes being a "troublemaker" is a good thing!
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Thank you for the supportive, understanding posts above! I'm on my 3rd oncologist in the 2 years since I finished radiation in 12/2008. First was suggested by the surgeon I went to and did not like him at all. Then I went to an Indian woman doctor who was suggested by a friend in a club I belong to. I'm not sure why she liked her because all she did was stare at her computer screen and ask questions from that. This doctor, a man, was recommended by a friend at Gilda's Club. Again, I'm not sure why she liked him but he does have a very nice woman P.A. When I see her, it goes ok and she is actually nice. The nurse said I would be seeing the P.A. this time and I had breathed a sigh of relief. Then, Dr. Ghoul came rushing in and I just tried to get it over with as quickly as possible. When I pushed him about my continuing pain (through the help from women here, I think it is truncal lymphedema) he told me that he thought that I should find a job and stop worrying so much. I started crying I was so mad and upset. I fired back that there aren't any professional librarian jobs in our town and he said that surely I could work at one of the schools. I don't WANT to work at a school and besides that shows how much he actually knows about being a librarian - you have to have a teaching certificate to work as a school librarian in this state! I was there to see him about breast cancer, NOT for his take on my career choices - or lack there of. After three duds of oncologists, I just felt I wasn't going to like any of them and couldn't mentally get myself up for going through this again, just to be disappointed again. When I worked as a Med Tech in hospitals and clinics, I saw personality types that seemed to go in certain areas of medicine. Though it wasn't always true, the specialists seemed to having a more domineering type personality, especially compared to GPs or pediatricians. I left human medicine and worked in veterinary medicine for many years. Veterinarians HAVE to be nice; their patients bite - Ha! Maybe I should try that next time. I'll get my "inner Chihuahua" on next time and snap at him if he treats me like a piece of meat. As Native Mainer writes, I could then have my chart flagged - as a biter - like we did at our vet clinic. So glad I have you ladies to trade comments with
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Guam /cancel...Naples, Italy/cancel. I have not seen an oncologist in over 3 years but it's fear.
I can't really sleep at night knowing I didn't follow up either so ....
If you go, I will go.Lis
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KansasKay,
I'm so sorry that you are treated like this, it is totally uncalled for. I still have a ton of pain and couldn't get through a day without pain meds. I've started having LE in my arm & trunk and l learned the MLD this has actually increased the pain in my arm. About a month ago I spiked a fever and had cellulitus and spent three days in the hospital. Still taking antibiotics to clear it up. Maybe when it clears up the pain will decrease in my arm.
I think that before you become a cancer doctor they should have cancer first and them maybe they would understand what it feels like.
Your freind. NJ
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In the early 80s I had a dear friend who was an RN. She had a breast removed and after seven years developed cancer of the liver. She was done with medical environment and treatment. It seemed to me that it was especially difficult for her to be treated by people she knew and had worked with.
She chose to not have any more treatment and wouldn't answer their phone calls that she needed to come in. Then they began to call me. I remember them saying that I had to convince her to come in and thinking to myself that she had made her choice and that they didn't seem respectful of that.
My mother died last Fall of bladder cancer at 87 and chose not to have surgery or treatment. She was so little and frail I doubt that she could have survived it all and her quality of life, if she did, would have likely been poor until she died.
But the medical people wouldn't leave us alone. The doctor shamed her for her choice and she cried all the way home. He called me several times, called her care center and then wrote me a letter saying she would die if I didn't get her into the hospital.
I was ready to get a restraining order! It was really stressful.
She didn't want it, had lived a long and full life and was ready to leave us. And we all supported her in that.
I am so new to this all for myself. But a great deal of control over my life has been co-opted and I also am interested in preserving my options of choice.
I hope to make well-informed decisions and certainly support you in doing the same.
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KansasKay, I was also a med tech in a previous career and know exactly what you are saying. You need to get a new team! Let me know if I can help support you in any way!
Anjanita, good for you and your mom! These docs need to understand quality of life is important!!!! Sometimes you just need to get a palliative care doc involved EARLY - this might at least indicate you/your mom are not just "dropping out" of Western medical care....
Some of the oncologists and PCPs you have all encountered seem to be less than "top notch." I have been quite lucky in that my onc actually cares about me as well as all her patients. Both surgeon and onc are women, very committed to creating a first-class breast center, have nurses available for phone calls to talk about SEs to meds, chemo, etc. Very human approach. BUT - I have also been advised ("pressured"?) to complete chemo, rads, tamoxifen, frequent follow-up, have had lots of SEs not fully addressed, and am not sure it is all worth it, considering none of this contributes to my quality of life and seems a bit wasteful if I don't intend to do any further treatment. I have started working with an integrative health clinic, focusing on yoga, diet, other positive activities and believe this will help me more in the long run than frequent follow-up with onc folks (note that I did NOT say I am not keeping ANY follow-up, but don't see the need to do it as often as they might like!)
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I too stopped going for check ups -I'm not sure it was the right decision but I felt it was one I had to make at the time.
To be honest I really don't know what a poke and a grope does to catch a reoccurrence. No bloods taken -and a mammogram every other year and looking at one check up a year.
I really disliked going - every time I said about the amount of pain still in the breast and under the arm it was dismissed with a smile .
I stopped Adrimedex after 6 weeks the side affects were too horrible - apart from the pain I was getting more and more confused. Mind you I didn't know that I just knew everything hurt and my family had stopped me driving.
Like so many others my marriage didn't take the strain to well and we no longer sleep together , in fact it's a bit like living with a friend.
Anyway life throw more hurtful stuff at us and last year our youngest son was admitted to hospital with kidney failure. It just happened to be a Saturday and I was on duty. I'm a control operator for a local government response team. and there was no one to cover my duties . This and other things at work caused me to have a mini break down.
I was off work three months - never kept the appointments as I just could bring myself to go.
I'm still on meds - however as part of the changes to help me cope I decided to stop all check ups. That was over a year ago.
Apart from ongoing pain in the breast and arm - I'm well. I work full time - dance and do Zumba if I'm not working and look after the house.
I'm coming up to 63 yrs old and am 5 years past dx with stage 3, grade 3 I.L. I had surgery - lost a 1/3 of the breast , chemo and 15 big shots of rads.
I'm content and feel I've beat this horrid disease - however some time in the dead of night I do wonder if I'm living in a fools paradise.
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Harvey ... I love the last line of your post.
I don't see any of my cancer docs anymore and this March I will be four years out.
Bren
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