Why do I even have to see an Oncologist?
Hi all!
I usually only read the discussion boards and never ask questions but I'm wondering ......when diagnosed with IDC Stage 1, grade 2 BC the follow up care is so passive? No scans or blood draws, just talking about the SE of the meds. Is this everyone's experience? Whether it's considered rational or irrational, I don't feel "cured" and I know there's always a chance of recurrence so why isn't my onco doing anything preventative or is this just the standard of care for this diagnosis?
Thank you in advance for any feedback
Comments
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I don't have share your diagnosis - I was stage 2 but can tell you I see my oncologist every 3-4 months now and have blood drawn to check tumor markers. MRI once a year and mammo/sono once a year (every 6 months alternate). I am on tamoxifen. I see my breast surgeon 2x/year. I believe I would be doing this even if I was stage 1.
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Hi Sammia, congratulations on completing your treatment. With regards to your question, I don't think you have to do anything if you don't want to. It's your choice. If you are asking what the benefits of regular follow ups with MO might be, I can list a few:
1. regular manual exams can catch a new lump before you notice it,
2. you can discuss any new symptoms no matter how small,
3. you can ask questions about new treatments, trials, etc that you are interested in
consider this an onco physical of sort
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Hi Sammia:
Being on Femara and as noted by Muska receiving physical exams by a specialist are some reasons to be followed by an oncologist. New information about endocrine therapy comes out quite regularly, so seeing an MO periodically permits them to consider your case and treatment plan in light of current information.
There is some information available about breast cancer follow-up, although again, individual patients and their various health care providers may depart from what is generally provided, in light of their specific circumstances.
Below please find some guidance from ASCO, although other organizations may have issued relevant guidance documents, both general and specific, that may differ in some aspects.
Patient Information Page from ASCO:
ASCO - Patient Information - Follow-up for Breast Cancer
See Helpful Links at bottom of that page, including the links to the professional guideline pages, with links to a variety of materials in addition to the published guideline documents:
Main Page: ACS/ASCO Breast Cancer Survivorship Care Page
Pdf or full-text versions of Guideline:
2015 ACS/ASCO Breast Cancer Survivorship Guideline
Full-text with links to articles citing this guideline (scroll to bottom)
Main Page: Breast Cancer Follow-Up and Management After Primary Treatment Page
Pdf or full-text versions of Guideline:
Full-text with links to articles citing this guideline (scroll to bottom of page)
BarredOwl
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You are doing something preventative...you are taking letrozole. You may have symptoms that develop while taking that and you'll need to discuss those with your MO so he/can can give you strategies to deal with them, etc. Your MO should also be doing a clinical breast exam at your visit, and do a physical exam looking for things that could signal trouble or cancer spread. I know it seems that a family doctor could do that. Some can, but most are not that familiar with these medications that we're on to know dosing, side effects, interactions, etc. Mine had no idea that the AIs put you at increased risk of trigger finger. Nor did the orthopedic who treated mine. I showed her the information on it and she was glad; she'd noticed a lot of women on them who came in with trigger finger, but thought it was just coincidence. Doctors know their specialties well, but can't know everything about everything. Family docs know a bit about a lot of different things, but with the rapid rate that new drugs come out, they can't possibly know everything about all of them. How you choose to follow up and who you follow up with is up to you, but your MO is the one who will be most up to date on preventing and detecting recurrence.
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I do realize that the letrozole is preventative and was fine in the beginning taking it but now the SE's are almost intolerable. I have trigger finger in both thumb knuckles and the tendons in my thumbs are painful to any touch which becomes quite limiting plus bilateral hip and shoulder pain now. When I last saw my onco, her response to all the joint pain was "quality of life" and gave me no other options. I have an appointment with her tomorrow and this will be my 4th visit and I have to say, she's super nice but I'm not that impressed with her answers to any questions that I have which kind of shake my faith in her ability to steer my treatment course and keep it on the right track.
My Oncotype score is 20. Didn't know where to put that when entering all the stats
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If the SEs from letrozole are becoming a burden you have options. Are you taking supplements - Vit D and Calcium? I'm sure others will chime in with supplements they find useful.
Have you tried other mfg of the letrozole? Some people think the fillers in different mfg can cause side effects. I'm using Teva and so far, so good.
Does your MO recommend trying a different AI. You might not react to one of the other ones.
If your MO doesn't work with you to find the best solution then you might need a new MO.
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I take vitamins A, B12, C, D3, E, Calcium, probiotic and glucosamine chondroitin. My MO has not suggested taking another AI
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Hi Sammia, how old are you and how long have you been on letrozole? In my experience, it might get better after the body adjusts to it - takes 5/6 months. The thing that works best - again, in my experience - is regular exercise.
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just turned 52 and I've been taking letrozole for eight months now. Other then taking walks, I have not exercised like I used to for about a year now. Just got clearance about 4 weeks ago from my PS to go back to my normal life whatever that my be now!
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If your onc hasn't suggested another another AI or switched you to a different manufacturer I would get a new onc. There are some onc's who know a great deal about this. If it were me I would switch oncs. Rather then being unwilling with work with you, she may not have the latest information . Good luck!
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everyone responds differently to the different AIs and some do better on one than others. Ask to try a different one. Remember that you can change oncologists. I switched after my last one told meto ignore a lump because I was not at risk of recurrence.
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Also, try getting more regular exercise, including stretching, cardio and weight lifting (start with small weights.) You will be surprised how much better - both physically and psychologically - you will feel. Swimming is great if you have access to a pool.
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What exactly does the physical exam and clinical breast exam consist of? The reason I'm asking is because at my MO visit last Friday she felt my neck and under my arms and listened to my chest and this was done completely clothed. She did switch me to Tamoxifen so hopefully the SE's will be less than the Letrozole.
Thank you all again
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sammia...she should be examining your breasts even though you had a BMX. Its rare but there could be a local recurrence in the breasts still. Actually someone should be checking them. Do you still see your breast surgeon?
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I'll be seeing my BS in the end of September, my 1 year anniversary of the BMX. I'm still so new to this and don't know what I should be expecting with any of my aftercare. It's all so frustrating for me as I'm a planner, kind of Type A and I only do well with black and white so all of this gray area is driving me crazy!
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Hi Sammia:
Your breast surgeon should check the lymph nodes along the sides of your neck, along your clavicles (the bones that run horizontally from shoulder to shoulder), and in the axilla (underarm). She should feel the front of the chest, and along the surgical scar. In my most recent exam, the physician's assistant also did a visual inspection from a distance.
You can do your own manual monthly or bi-monthly inspections of your underarm, chest and scar (e.g., in shower), and of the overall visual appearance in the mirror to learn the landscape and spot any change early.
BarredOwl
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Sammia, don't hesitate to ask your MO and BS details about your follow-up care: which member of your team (including your family physician) is to do what, and when. You can also check if there are practitioner guidelines, or patient handouts, on their hospital / agency websites.
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