I'm thinking about discontinuing all doctor visits.
I'm three years out, had stage 1, grade 2, lymph node negative, Oncotype 7 IDC with DCIS. I had a mastectomy and proceeded to go through a year of hell on hormonal meds until I stopped those. The doctors told me that until I reach year 5, I need to see my breast surgeon ever 6 months, my oncologist every 6 months, and my plastic surgeon every year. I am starting to think I just don't want to do any of it anymore. I'm never going to take hormonal meds again, or any treatment that makes me miserable, no matter what happens with my situation. Even if I turn into a stage 4 patient, I'm still not going to do *anything* that makes me miserable. Going to multiple cancer-related appointments every year and waiting for the tumor marker test results is not good for my mental health. My oncologist also harps on my lifestyle every. single. time. Asking me if I drink any alcohol, telling me whether I progress to stage 4 is "in your hands" based on lifestyle choices. WTF, I feel like she's setting me up for blame if I do become stage 4. I just want to quit it all and leave it up to fate.
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All doctors I've seen, ever, ask about things like alcohol and diet and other lifestyle things. It's part of the information they need to have for any treatment plans. My primary recently nagged me about my weight, especially since I've had a variety pack of cancers. I didn't particularly like it, but I also know it's part of her job to say it.
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I get ya. I went through treatment for stage 1 grade 3 triple negative; surgery, chemo, radiation. When I was done with treatment, I asked the oncologist what schedule I'd be on to see him. He said that was up to me -- again, triple negative, so no hormonal or chemical aftercare. He said I could come in every few months, or never. I chose never.
I saw my surgeon annually, except when there were issues, of course. She cut me loose after 3 years.
I am supposedly on a plan to see the cancer clinic post-treatment NP once a year, but only for a couple more years.
So I really think that's up to you. Stop going, or cut the schedule to annual, or get another MO that you don't hate and see them on the regular schedule.
Of course, I have a great primary care physician (and a long, solid relationship with her) who is willing to ask for about any testing or refer me back to any of the docs, so your mileage may vary.
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I also understand. Supposed to see the BS annually. I stopped seeing her after the 1 year check up when her office advised she didn’t have time for questions as she was seeing two other patients in addition to me in a 15 minute time slot.
I see the MO annually and she is nice but doesn’t seem to know what to do with me. She doesn’t order bloodwork as she leaves that to the PCP and typically doesn’t order imaging as that is under the purview of the BS. She refuses to discuss risk of recurrence. I declined an annual MRI since she couldn’t explain the rationale other than my insurance would cover it. BS doesn’t believe a MRI is needed.
Since I no longer see the BS the MO did offer to order a mammo this year but I declined. She can only order the mammo for the imaging center connected to her hospital system. After that center biopsied the wrong area in 2020 I have lost confidence in them. Haven’t had a mammo in 18 months and have not yet decided if or when I will. I know the PCP can order it if I change my mind.
So basically the MO refills my anastrozole. I saw her 2 weeks ago and I feel kind of guilty taking up her time as I’m sure she has patients that really need her time. Both the MO and medicalassistant commented that they had recently refilled my prescription for another 12 months and asked the purpose of my visit. I thought I had been previously told I I had to visit the MO annually to get a prescription refill but maybe not. I’m fortunate to be mid 60’s and very healthy. With a low risk of recurrence, I’m somewhat comfortable with my decision.
I think you will need to factor in your age and overall health to determine if you should reduce the number of visits and/or find another MO. Do you feel you are getting any benefit to seeing multiple doctors once or twice per year? You will need to balance the benefit vs. risk and the impact on your mental health.
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I understand every facility has its own standards for treatment and care. Is it the norm to see so many doctors every year?
Once I did my follow-up after my mastectomy, my Surgical Oncologist told me she wouldn't see me again unless I had a recurrence. She gave me great advice: I must get familiar with my boobs as soon as they healed from the reconstruction surgery because I could have a recurrence, and I must keep checking them. Other than that, she hoped she wouldn't see me again because it would only be for a recurrence. I loved that thought too. She was amazing, but I hope I don't have to see her again either.
I just got moved to yearly visits with my Primary MO, who manages all of my care and do three-month visits with my Secondary MO, where I get the Zoladex shots.
I haven't had any appointments with my Plastic Surgeon since I did my reconstruction follow-up, which I did through the portal since I didn't have any healing issues after the implant placement. I may drop a message in the portal in a few months to discuss adding nipples in the next year or two. Not sure if I want to add them or not.
I have not had an Oncologist harp on me about lifestyle, but we did talk about food choices in the stores. My Primary MO today told me weight loss could be more effective than chemo (studies). I am not sure if that is specific to BMI for certain patients, and I am sure there is plenty about it I do not know. She said I am healthy and don't need to lose weight but increase my calcium intake because of the Examastane.
I am not sure about the standard of care at different facilities, but I don't doubt my care with my out-of-state Cancer Team. If they tell me not to come in, I am staying home. :-)
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Orangeflower, I agree that your oncologist sounds like she is placing a horrible weight on your shoulders by telling you that you could progress to stage iv if you make the wrong lifestyle choices. May I just say, many of us will tell you, getting a stage iv diagnosis is a friggin crap shoot! So many of us have done absolutely nothing wrong and yet here we are! My lifestyle may not have been pristine, but I did not smoke, drank very little, exercised, blah blah blah and—stage iv from the start after over 10 years of annual mammograms! And I can tell you I know plenty of women who smoke, drink and are overweight (I'm not judging them in the least) and they are running around cancer free! So wtf?!!! I absolutely hate that doctors would guilt women to the degree that they are practically blaming us for bringing breast cancer, or stage iv bc, on to ourselves. It is simply not true!
For that reason, I would not go back to such a doctor. I would have to find one who is not bringing fear into my life every time I visit, and one who would work with me, not be an authority figure over me. I wish you all the best!
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Yes, a lot of this just boils down to genetics and the luck of the draw. You shouldn't have to feel that it's "on you" at all.
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Thanks divinemom. I'm sorry to hear about your story, but happy to see that you are a 12 year survivor. Sending big hugs to you.
Yes, my doctor's words aren't sitting right with me. She knows I have mental health issues, specifically serious chronic depression. I don't drink at all anymore and told her that, yet every time I see her, she brings up this issue. She doesn't seem to believe me and has said "people don't tell the truth about their drinking." I just don't like the way this is making me feel.
I'm actually not happy with the big corporate clinic where she works, either. They started me off on Lupron + AI, even though that's not common at all for my diagnosis. They are just very aggressive and put me through a lot of suffering.
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orangeflower,
I am SO sorry your doctor speaks to you like this. I'm with the others: please find a doctor you can have a good rapport with. My first visit was with an oncologist who made me feel horrible, but my current one I actually laugh with every visit, and...look forward to is a bit much, but really don't mind visiting (and I'm still in the every three month visits). Discontinuing care is absolutely an option, but I would hate to see you do it because of a terrible experience with one clinic. Good doctors do exist! Good luck to you.
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Ugh, that sounds terrible. I wouldn't want to go back to them either. Are there other options for doctors in your home area?
My stats were pretty similar to yours. I saw my SO's office for maybe a year or two after surgery, and now I only see my MO. She orders my ongoing screening and testing. I don't get tumor markers though.
I like her and her staff a lot, and it gives me comfort and peace of mind that they are looking over my labs. I am taking hormonal treatment though. Another thing I really appreciate is the manual exams. My cancer was first discovered at a manual exam at my gynecologist - I never would have felt it myself. To me, those manual exams feel just as important as the mammograms and MRIs (that my doctor is currently fighting to help me keep). My awesome gynecologist who found my initial cancer left the area.
But I think I would feel VERY differently with doctors like yours.
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At the place where I had surgery, etc. I was discharged by the breast surgeon after the surgery itself since I was seeing the PS ongoing for the follow-ons to having had immediate DIEP recon at same time as the BMX. The PS discharged me after I had my second of 2 fat grafting procedures to even things out, that was a year ago. I stopped seeing the MO whom I saw a few times prior to my surgery (which was delayed for close to 3 months due to COVID and during which time I took an AI and which caused severe side effects for me) because I decided against taking AIs after the surgery and she would only follow the orthodox standard of care - I only saw her once after the surgery. At that visit she was reluctant to tell me the stage 4/distant metastasis risk with and without AIs but finally told me when I pushed and it was 3% with AIs and 6% without. I made to the decision to accept that additional 3% recurrence risk and not take an AI. She also told me that ordering specialized bloodwork and periodic scans was not part of the standard of care so she doesn't do that - so I figured that since I'm not taking the AIs and there's no testing that would be done why would I bother to continue seeing her? At least I have a good primary care physician.
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I would definitely get a different doctor; you don't want to NOT get the care that you need because of a bad relationship with your physician.
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If you have a good PCP or ob/gyn for mammograms, breast exams and any issues that come up you should be fine.
I go to my breast surgeon's NP for yearly checkups since my local hospital has ancient imaging equipment and missed my tumor for 3 consecutive mammograms after a callback for architectural distortion. She no longer mentions my skipping the AIs since I gave her a list of the 13 reasons why I am doing so. If necessary she will order additional imaging and get me right back in the system. My PCP handles my bloodwork, pain and fatigue problems. Medical professionals should be supportive, not demeaning.
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My lumpectomy was in July 2018. I still see my BS annually, although this year's appointment in June will be my last with her. My MO sees me every 6 months since I stopped Tamixifen after about 9 months. She sees the compliant patients every 3 months. She does a LOT of bloodwork each visit, and has treated me for something that cropped up in a blood test that was not breast related - I guess she was wearing her hematologist hat. I wouldn't say I particularly like her, but she's very thorough and stays on top of things, so I do respect her. I did not like the RO, but that was just 6 weeks out of my life, so no big deal. He doesnt follow patients after treatment unless theres a problem. I'll miss the BS, though; we always have a lot of laughs when I see her.
I did have an oncology gynecologist for my hysterectomy in 2008, who I stopped seeing after a few follow-up appointments, because he was a patronizing, misogynistic asshole. So I understand why you wouldn't want to stick with a doctor you dislike. There is one current specialist I don't like (Dr. Eyeore, the gloom and doom champion), so my nice PCP said she'll monitor that situation and I won't have to see the specialist unless something changes on my scans that would warrant his involvement.
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Blood work: Yeah, no one was going to be doing blood work on me regularly, except my PCP for the normal things like Chem 7, lipids, thyroid... . Again, no chemical/AI/hormonal after care for me, and my cancer clinic just plain doesn't do extra stuff. I couldn't get a CBC blood test for my annual PCP exam in January, because I'd had a CBC done in July for a problem. Doctor said, no, you only need a CBC once a year if nothing's wrong. So, tumor markers, etc, they were never going to be checked regularly for me.
If your system does that and it's worth it to you to have those tests run, then it's also worth it to find a different doctor that you like and get those tests run.
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The only reason I was getting tumor markers done is because my MO said so. I had no idea that patients at other clinics weren't getting it done regularly, too! I might just discontinue it. I guess seeing low tumor markers may give me peace of mind, but that's it.
My MO said that patients benefit from catching stage 4 as soon as possible, but I thought that wasn't true? Isn't that why PET scans aren't done on early stage patients?
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Unfortunately, finding stage iv metastasis earlier does not improve survival. That’s why tumor markers and bone/liver/lung/brain scans are not routinely done until symptoms appear.
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That's what I thought. I swear, I think my MO is bullshitting me sometimes. One time I asked if I could have my ovaries removed and stay on a low dose of synthetic estrogen for awhile, then gradually taper off it, instead of doing traditional hormonal therapy. It seemed better than having my premenopausal level of estrogen that I have now. She told me no because synthetic estrogen "is more likely to cause metastasis than your own estrogen." What? I've never heard or read that anywhere. I think it was just an excuse to say no to my request.
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Orange - I have a similar diagnosis. Your Onc seems very focused on progression to stage 4. Have they said why? While anyone could progress to stage 4, there is a much greater likelihood of that with more aggressive cancers such as inflammatory BC or triple negative BC or cancers that have lymph node involvement. Perhaps a 2nd opinion would be appropriate.
I have found this thread very informative although I’m sorry you are dealing with this MO and concerned with their comments to you.
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Harley, they never said why, and I didn't realize until reading the breastcancer.org boards that my clinic is unusually aggressive. I was put on Lupron and an AI as the first line treatment, not tamoxifen or toremifene, even though I told them I have severe chronic depression. I was told that depression is not a side effect of these drugs - another inaccurate statement. That wasn't even my current MO, that was a different MO in the same clinic.
I think this clinic just takes an aggressive approach to treatment with the goal of "lowering recurrence risk as much as possible", as that first MO said.
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OP, maybe consider visiting a different oncologist for ongoing care. I don't think it's fair for them to tell you that avoiding progression to stage 4 is in your hands. There are some things that just aren't completely in our control.
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orangeflower, I'm a little late to this conversation, but I'm appalled that your MO would tell you that progression is in your hands! Cancer happens, progression happens, and while a healthy lifestyle may help, there are no guarantees that we won't progress. I've NEVER had anyone on my medical team imply that my progression was my fault.
You need support and not guilt or anxiety-producing comments.
I wish you well!
(((hugs))) Carol
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The first few years doctors are very aggressive to help get you as far away from original diagnosis. It increases your odds of survival. Have you asked for 2-3 Attivan while waiting for test results? I always wore my Game of Thrones " Not Today" shirt for checkups to help me feel empowered and dressed up a little to help inspire others in the waiting area. I hope you continue to go or change docs and continue. Keep on keeping on.
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No medical,professional,should be making anyone feel guilty about their lifestyle. If they try tell them to “walk in my shoes or fly my broom” then go get another physician. I know, easier said then done. I have only just started on this journey and let me tell you I’m all about leaving them and their zillion app’ts in the dust. Probably my only “friend” in the whole group is my PCP who luckily has time to be knowledgeable AND compassionate.
Do what makes you happy!
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Welcome, @jlgc49! We're sorry you find yourself here, but we hope this can be a source of support for you - we know how important it is, especially if you're not getting that from your medical team.
The Mods
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Orangeflower, not sure what you decided but if you aren’t taking the meds and don’t want scans then stop going. I want scans so I beg and plead and claim new pains and symptoms. Sloan also recommends lupron and AIs over tamoxifen. Studies show AIs to be more effective and especially for lobular. I decided to get ovaries out instead. But I am totally miserable. My drs don’t do blood tests and none of my drs have ever given me lifestyle or diet advice. That would really make me mad. My drs don’t seem to want to see me much anymore three years out, too busy with other patients.
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Hi jrnj. I still go to the appointments, mostly because seeing low tumor markers makes me feel relieved. I'm almost 4 years out, so hopefully I can start pushing these appointments out further in about a year.
I'm so sorry to hear that you're still miserable. I remember you posting about that before. What symptoms are you having from the oophorectomy?
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Orangeflower, I was told there is no blood test for breast cancer. I hate that there is no consistency. I meant I am miserable from the letrozole/AIs. Joint and muscle pain, horrible night sleep, always agitated and tired.
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