Follow up for Stage I's
I feel like I've just been dumped. I had my last chemo 12/14 and today I met with the onc. I asked what the normal protocol for follow up is and she said there is none. I only need to meet with the nurses to get my herceptin infusions. No scans. No tumor markers. No u/s. No blood work. Done. She said to call her if I develop any pain/symptoms. OMG. Is this what other stage I people are doing? I thought there would be 3 month follow ups. Of course I also have to have echo's for my ejection fraction check but I feel dumped. I don't want to come back one day riddled with cancer that could have been detected sooner and treated. Please let me know what other stage I'ers are doing. Thanks.
Comments
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I did not have chemo, just radiation followed by Arimidex. At 6 months post diagnosis I had mammograms. I see my medical oncologist now every three months. She does CA15-3 and other blood work each visit. That's all that would be routine but a spot was found in one lung during initial workup so I have had lung CT twice and one whole body PET scan... so far normal so won't have to have those again for a while I hope. But I am really happy to have the tumor markers done even though some doctors don't like them. Will have mammogram again at 6 month anniversary.
But you must be HER - so maybe that makes things different? I understand your anxiety!
pam
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I would call your primary/family dr. I am stage 0 and had bilateral mastectomy with no other treatment, and my PCP is following me in 3 months, then 6 months, then every year (minus symptoms of course). I won't have mammograms since I have no "breasts", but she will be doing extra bloodwork at a minimum. I will also get ultrasounds from my ob/gyn. FWIW - I am ER/PR- and HER+++.
She told me something that alot of others seem to refute and ignore - anyone who has had cancer (of any type) is at a greater risk of developing a second cancer (of any type). It's just the way it is, and they don't know why. So, I would find someone who will be willing to follow you at least minimally.
BTW - my mom had lumpectomy and rads, followed by Tamoxifen and is still followed 6+ years later.
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Absolutely not. I am stage 1, and finished my chemo in September, finished rads in early December - have my appt (3 month) with onc on Dec. 23. She does not do any scans whatsover unless there are symptoms to indicate the need for same, and although she does not feel tumor markers are terribly accurate, she does them (had my first one shortly after first visit with her, which she uses as a baseline. Fortunately my first and before chemo was normal and my second after chemo is even lower. I will have my third one at my next visit. She does complete blood work up on each 3 month visit and will continue to do so. This will go on for the next 5 years at least. I think after 2 or 3 years, I then go every 6 months, instead of the 3 months. Good luck to you - you need to be watched with hormone responsive or triple negative.
Linda
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My follow-up schedule is much like Linda's (LRM216). No scans (to avoid unnecessary radiation) -- if I had symptoms there would be scans -- blood work-up including tumor markers is now once a year (I think it was every 3 to 6 months in the first year or so). I had left mastectomy, no rads or chemo (Oncotype Dx score of 16), have been taking Aromasin for 2-1/2 years. Saw my onc every 3 months for the first year; every 4 months in second year; now, in my third year, every 6 months. My BS has followed me on a similar schedule. Yearly mammo and ultrasound of my right breast. Yearly bone densitometry (DEXA scan) to see if Aromasin is causing osteopenia/osteoporosis.
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Im just 3 yrs out now and the normal for me is: every 3 months the first year, then every 6 months until the 5 yr mark, then back to yearly. My onco doesnt do scans but said he would if I wanted them done. He does do a blood work up each visit though.
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Had lumpectomy and 6 wks rads. My med onc sees me 3 mos for first 2 years then 6 months thereafter. Does tumor markers each visit and will do next dexa scan 2 years after recent one because of the Arimidex. Will see BS once/year.
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I saw my oncologist every 3 months for 2 years and now is every 4 months until I reach my 5 year. I had chemo 4 rounds of A/C and 4 Taxol and a year of Herceptin weekly. and radiation.
I also had a lumpectomy 1.2cm was the size and no LN involvement
My Dr does tumor marker test and CBC. I see my BS once year and Mammo once a year.
Bone Density every 2 years
I take Femara for 5 years,
patoo what is dexa scan?
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Seyla, dexa scan is the bone density unlike a bone scan which can test for mets.
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I get Bone Density test, Is it the medical name for it???
The test I have takes about 10 minutes and Im fully dressed. Is that the one you get?
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Seyla, that's the bone densitometry test I get (easiest test ever!) -- it's called a DEXA scan, but I think a lot of oncologists don't like to use the word "scan" for it because they don't want it to get confused with a PET or CT scan that looks for mets.
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Sorry Im bothering you again but I just want to make sure,
This is the one I get. And they call it bone density test. Is Dexa the same thing?
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Thank You Ann and patoo. I learned something today.
Sheila
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I am Stage 1b, was having mammos every 6 months, left one then both alternating like that until my June mammo my BS said I could go one a year if I want. I see my oncologist every 4 to 6 months until my 5 years are up on Arimidex. I just had the initial tests done in the beginning but never had TM test or Onco score test nor a PET scan. I have bone density test every 2 years because I am on Arimidex. That is known for causing bone lose.
I will let you know next month when I see my onc Jan 22, 2010 what she wants to do next.
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I was diagnosed 3 years ago, and am currently doing 6 month visits which just include a physical exam and blood work. My doctor does not do TMs or any diagnostic tests unless there are symptoms. When I questioned why no scans, my onc explained that studies have shown that detecting metastatic cancer earlier does not affect survival... I didn't want to believe this was true - and who knows if this study is right; but the philosophy of some oncs like mine is that routine tests do not affect outcome, they only increase anxiety. I was skeptical until I had pain in my side and had to have an MRI (it was clear).... the anxiety was so bad that I never wanted to have another scan ever! I understand the philosophy better now. But I do have alot of trust in my onc. I think it's important to find a doctor that you can connect with, and one that you really trust. It never hurts to get a second opinion, even at this point in your care. I got a second opinion after treatment just to make sure there was nothing more to do, so you may want to go that route, too.
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Baseline Dexa scans are sometimes indicated because AI's, especially what I'm on, Arimidex, are known to possibly cause bone loss. It's purpose is not to detect mets so there should be no anxiety involved. A follow-up is usually done 2 years later to compare and meds can be added if necessary to help reverse the loss.
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You can see my stats below. I had a 3 month post chemo visit and went immediately to 6 month follow up appts after that. My onc feels my neck, my fake boobs, my arm pits and that's it. No blood work, no scans, no nothing. I saw him last week after just having my nipples done, so he didn't even check my fake boobies this time. I don't see him until June 2010. I too feel a bit dumped. I asked him how I would know if another cancer was growing. He asked me, how did you find the breast cancer? When I told him it was found during a routine yearly exam, he said keep doing all your yearly exams and if there's cancer, we'll find it. He feels the anxiety and false positives of scans and tumor markers aren't worth doing them for stage one.
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I posted this long story on another thread...
Original Onc: does bloodwork every 3 months when he meets me for my lupron shot, plus a physical exam. Did mammos with ultrasound every 6 months and MRI every 6 months.
Second Onc: began seeing him just shy of being two years post-diagnosis because I moved out of state. No scans, no blood work. Mammo/ultrasound every 6 months, and breast MRI every 6 months.
Third Onc: hired her after I fired Onc #2 because I just HAD to have some bloodwork. Her protocol is bloodwork every 3 months + exam, chest Xray annually, mammo/ultrasound every 6 months and breast MRI every 6 months; vaginal ultrasound annually
Fourth Onc: not sure but will meet her next month. I have moved out of state again. I hate onc shopping.
Don't feel dumped. A lot of docs go very light on a stage 1 or 2 in order to reduce (statistically) unnecessary anxiety and radiation exposure. If you want more, you can ask for it, but it's ok as long as you're getting a good exam at least annually IMHO.
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I have to say that I feel for you. I am also a stage I four year survivor. I had chemo and radiation and tamoxofen for two years, now on aromasin. However, I still see my oncologist every six months, also the PA. I have my blood work, and she spends quite a bit of time with me. Is it possible for you to change doctors? I don't mean to upset you, but this is very important that you feel that your are still cared for and that your doctor is involved with your survivorship. I will send you good thoughts and prayers and hope that you can talk with your doctor. I believe in being proactive.
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Hi Patoo, you have similar diagnosis, although they took 5 lymphs. Can you tell me why. My Dr. only took one of mine. Also I would like to hear your experience with kind of meds you were given. I hear they want to RX Tamox and Radiation. I'm a bit nervous about the Tamox. Is this what they gave you?
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