What's 'normal' for follow up?

My impression is that the standard is simply mammography for local recurrence (that's all they've suggested for me).  I insisted on ultrasound too, because my original cancer was missed with mammography. I also asked for CA27-29 levels (cancer marker)  even though the oncologists don't recommend it (mine was low so if it increases, I'll know somethings going on).  If it stays low, I don't mind a sense of security, even if it is a 'false' sense of security.  I have the same 'flapping in the wind' feeling and I'm a bit annoyed that my 6 month follow-up is 6 months from my last rad treatment--I'm jealous of folks who are getting their 6 months follow-up at 6 months from diagnosis.  I also have posterior rib pain (and elbow pain).  I'm tempted to 'demand' a bone scan, but I think the reason they don't want to find mets (even if that's what it is) is because they don't have good treatment and since treatment is basically considered palliative, there is no point in finding out sooner rather than later.  What was your follow-up?

Chrissilini, I had similar dignosis, but had chemo. I see my Oncologist every six months for now. I would push to have some sort of intervals of conversation with your oncologist to talk about any new treatment protocol, etc, that perhaps should be considered. We're still discussing Zometa, now Tamox is up to 10 years, we've talked about Metformin, but I didn't qualify for the study. I have mixed feelings about these meetings, but it's my time to get questions answered. Onc says after five years he'll release me to PCP only.

I was seen by the onc and bs every 6 months for 5 years, then it went to once a year. The onc did the ca27-29 each time, even though its not standard. Thanks to the test I was dx with spinal mets almost 8 years out. I had no symptoms and still don't. If he wouldn't have done that test and simply waited for symptoms like he was supposed to, I probably would have needed rads and or surgey to my spine. They say it doesn't prolong life to do tests but I doubt if that's the case. If I waited for syptoms I also may have had it in the liver or lungs. Sorry to post in a different stage thread. I saw the subject and I just think its really important to have some kind of follow up. I did have ins reject the test but only once in all those years and they did pay after I appealed and the onc wrote a letter.

I went to see my BS and I asked her " So, what happens now?" 

She said "  You are going to be seeing me every 6 months for the rest of your life. 

                  You MUST do a monthly self examination to make sure you don't feel any pea like lump under the skin

                   You don't need  Mammograms or Ultra Sounds

As far as the Oncologist is concerned the first time I met with her she told me that I will be seeing her every three months. My second appointment is on December 26 and I will get more details.

Mena

HLB, how often did you get the tumor markers checked? There is a young gal in a group that was stage 1. Her MO did PET scan and found liver mets. I can't remember why they decided to do that. Her labs were normal and I don't think she had any symptoms.

I met with one onc after my lumpectomy and again (at my request) after mastectomy. I saw a nurse practitioner at 4 mos. When I called to schedule again, she had moved to another hospital in the same system. So I'm scheduled with a 3rd person in Jan. If all she does is a breast exam, I'm going to just see my PCP if she's ok with that. I'm scheduled for a mammo in Feb (a year after MRI presurgery). I figure I'm just playing the odds since neither tumor could be felt and the larger, more aggressive one didn't show on the mammo.

MENA1954 Wow -- that seems like a lot of follow-up for Stage 1.  I am Stage 2A and all I do is see the onc every six months for an exam and blood work.  I will also see the BS, at my request, once more but after that I think it will be just the onc.  I am curious, what does the onc do at the every 3 months appointment?  And what does the BS do every six months -- examine the reconstruction, look for signs of recurrence?   There seems to be a great deal of variation in the follow-up protocols for early stage BC.   Does anyone know what the "standard of care" might be?   I had a double MX, radiation and am on Amorsin.    

I think the trend these days is for as little follow-up as possible and it's taken me a while to buy into this idea, but I think I'm finally 'drinking the kool aid'.  My radiation therapist said that it's extremely rare to get a recurrence in the radiated breast and since I now know that no-one will be better at finding a new lump than me, I have accepted the sole responsibility for finding it (if it happens).  Besides, I probably have a higher risk (of a new tumor) in the opposite breast anyway!  Personally, I don't see the point of the mammogram or even ultrasound since I found my own lump in spite of the mammogram and the ultrasound just confirmed where to take the biopsy.  As for mets, I'm not gonna argue with my oncologist anymore about a bone scan unless my pain becomes intolerable.  Seems funny that they still want to "follow" us every 6 months (to a year) when they aren't willing to do any real testing (ie for mets).  Maybe I'll just have blood drawn for CA27-29 and not bother with the mammogram/ultrasound/clinic visits.  Can you tell how cynical I have become? 

I know what you mean--both my lumps were missed - even though I had had 30 years of annual mammograms - the Breast Center wasn't even that surprised. They told me only 85 percent are accurate--

I know this doesn't answer your question but just wanted you to know that when I reach the stage in recovery that you are I would have the same anxieties. During the times of highest anxiety short term use of Ativan could be useful. Your MO or surgeon might be willing to prescribe. If not a good psychiatrist could help.



I also wanted to know if your insurance balked at paying for the bi-lat mastectomy given your stage and no cancer detected in lymph nodes. How were they convinced to pay. Did you have the BRCA gene?



I want a bilateral in part because I have had an extremely difficult time controlling side effects in chemo and because my subtype of BC (tn) has a higher rate of recurrence in the first three years than other types.



Thanks, Peggy

It has been a year since first diagonised. I go for my 1 year mamo in a couple of weeks. Dr. said 6 months after radiation as the Doctors will not be able to read the xray if sooner due to the radiation. Just been graduated to ever 6 months with BS. Still going every 3 months to Cancer Dr. Checks my tumor markers and liver. I have no tests for Pet scans,MRI, etc. I had a bone scan 1 year ago. Just blood work. Guess thats it.

Chrissilini, I too am stage 1, grade 1, and do have follow up with the oncologist . At first it was every 2 months, then every 3 months, working up to the 6 month schedule that I'm on now at 3 years out. When it's time for my appointment I have blood work done the week before I see the oncologist so he has the results in hand. He does check tumor markers as part of the blood work and does a physical exam from the waist up. He ask if I'm having any issues we chat a bit and then I'm on my way, until the next appointment in 6 months. My onco follows NCCN protocol, which my Blue Cross nurse case manager said is very important. To be honest, I do get very nervous around the time of my appointment, being very afraid of what I might be told ( we were all in great shape before one day they told us different ), but I do feel better after the appointment is over knowing that it hasn't came back.

Chrissilini, I also have 6 month follow ups after 2 years. Every 3 months the first year. As you can see I'm also stage 1 with a very small tumor. My Onc. does tumor markers at the visit and also does a physical exam. I also have diagnostic mammograms every 6 months.

I have folowups every 3 months which is protocol for my triple negative, although I am stage 1 grade 3