Until the next scare...
Hello ladies...I rarely post but I lurk often and I want to say that your posts have provided me comfort each and every time and I appreciate all of your posts, the good news and not-so-good news...the good news give me hope and the not-so-good news make me realize that I am not alone (I apologize...I know, this sounds so "misery-loves-company")
Anyhoo, I just wanted to share my latest "scare"...three months ago, my tumor markers went up from 20+ to the 30+ range so my onc ordered a PET scan. The PET scan showed increased activity in the lymph nodes in the right and left neck as well as a "newly visualized" thyroid nodule...yikes...so of course more tests (although the following blood test showed that tumor markers have returned to the 20+ range) I had a nuclear bone scan which showed uptakes in the thoracic area but nothing on the neck...so then I had a thoracic MRI as follow up for the bone scan and ultrasound-guided biopsies of the thyroid nodule and the right neck lymph nodes (the ultrasound can no longer find whatever was going on in the left lymph nodes) as follow up for the PET scan...
Verdict: negative for malignancy...no evidence of metastatic breast carcinoma...
Of course I am really thankful for the end result and for my onc's proactive approach and vigilance but am having some serious doubts about whether the tests, the waiting, the swollen neck after biopsy and the emotional toll of it all is worth it...I wanted to tell my onc no more blood tests as long as no symptoms...but didn't...augghhh...
Lessons learned: things show up on scans that are not necessarily cancer...there is a price for vigilance...accept new normal...life goes on...
Thanks for listening. Love and healing to all.
Footnote: Except for minor aches and pains from Tamoxifen, I am doing well two years and four months past diagnosis. Yay!
Comments
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So glad for no malignancies! Scans are scary stuff. Congrats..and celebrate!
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Bless your heart, what an awful lot of awful scans. So glad all is well!
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thanks bugs and kimber! i celebrated with a nice glass of bubbly! cheers!
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Glad to hear your scans turned out OK. It's funny that you should write this today, because I spent a good part of the night last night worrying about whether I am doing the right thing by staying with my current onc whose philosophy is no tests, no scans, no tumor markers, etc, unless there is a symptom. Of course, I'm sure my insurance company loves this. My onc thinks this is less stressful for me, and your letter illustrates to me why that might be so. Even though, on nights like last night, I worry myself into a frenzy because I don't have any idea whether my prior treatments, chemo, surgery, rads, and now Arimidex, were out to root out the cancer that was found in my clavical and pectoral nodes when I was first dx'ed.
I see the BS in late March, and the onc again in May, and have many more questions to ask them, many more than I did at first and all through treatment. I was of course in shock at first and everything seemed like it was moving so fast, and in the interim I've learned so much more and read about how others are being followed differently. I may decide to get a second opinion on how I am being followed as I see others have done on these boards.
So, having been through this, how do you feel about this approach? Do you want to stick with it even though you may have these scares occasionally?
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Hi Kathleen,
I love and trust my onc and would probably agree to whatever he recommends for my follow up care. Having said that, I sometimes think that he is on the aggresive side of things. My insurance is probably NOT loving him. Based on what I have read on this board, some oncs do not recommend anything, not even blood tests, unless there are symptoms. I also read somewhere that intensive follow up care do not improve survival and that early detection does not apply to mets. I, for the life of me, cannot get my head around that. I somehow think that finding mets early would and should help. Don't cancer cells go amok (for lack of a better term) when left untreated?
One thing is for sure, I will continue to have an internal debate about whether these tests are worth it. BTW, my rad onc is on the less agressive side of things. He was very respectful of the other onc's opinion but did wonder out loud why a PET scan was recommended after treatment.
I wish you luck in your appointment and I hope that you'd be able to trust the type of follow up care that you decide on. Take care.
Lumpectomy 09/08, AC x 4 then Taxol x 12 10/08 through 03/09, Rads x 33 05/09 through 06/09 Tamoxifen beg 08/09
Diagnosis: 9/10/2008, IDC, 3cm, Stage IIIa, Grade 2, 4/6 nodes, ER+/PR+, HER2-
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