HER2 Support Group Forums - View Single Post - No tests scheduled after chemo is finished.

LeahM · 04-09-2013, 10:55 AM

Debbie, I for one am not upset you entered the fray. Quite the contrary actually as I have spent the last few hours re-reading what you have written and giving it some thought.
I realize that mets is mets is mets, no matter when you catch it, but I do believe sooner is better. If I didn’t have a forward thinking, proactive gyno I would probably still not know I had cancer. If my gyno hadn’t ordered a mammo yearly for the past three years (starting when I was 37) with u/s every six months just in case I turned into one of the one in ten thousand people whose fibroadenoma’s turned into cancer where would I be now? Yes, I feel lucky that my cancer was detected early. Lucky lucky me. So I can’t help but think that finding one small area of mets would be better than finding a large area of mets. But that’s just my opinion.
Personally, I would like that one PET scan and brain MRI post treatment, and of course I want them to be clear. I feel that reassurance will go a long way in my overall anxiety level. But I just want the one. I know having tests or bloodwork could open a can of worms I would rather keep closed. My recent CT scan of my lungs proves that to me. “We aren’t sure what we see, don’t think it’s mets, let’s wait 3 months and look again”. Umm…ok….meanwhile…and I dying??
And you are right…as my treatment comes to an end my anxiety level rises. Has this worked? Will I live to see my daughter graduate HS? College? Get married? Be a grandma? I know we don’t have guarantees in this life but dammit…I want one.
So here is a truth…my herceptin ends in July…and yeah…I want a PET scan and an MRI of my brain…but I want to wait till the fall to have them done. Why? Because last summer sucked and I would like to not repeat it. I would like to enjoy this summer, thank you very much. And hopefully my follow up lung CT in June will allow me to do that.
I know we can never really know what is going to happen next, I know this better now than ever.
Debbie, I thank you for taking the time to respond and explain things in a way my med onc can’t seem to do. What you said makes sense and gives me much to think about
Best
Leah

04-09-2013, 10:55 AM	#16
LeahM Senior Member Join Date: May 2012 Location: Bethlehem PA Posts: 395	Re: No tests scheduled after chemo is finished. Debbie, I for one am not upset you entered the fray. Quite the contrary actually as I have spent the last few hours re-reading what you have written and giving it some thought. I realize that mets is mets is mets, no matter when you catch it, but I do believe sooner is better. If I didn’t have a forward thinking, proactive gyno I would probably still not know I had cancer. If my gyno hadn’t ordered a mammo yearly for the past three years (starting when I was 37) with u/s every six months just in case I turned into one of the one in ten thousand people whose fibroadenoma’s turned into cancer where would I be now? Yes, I feel lucky that my cancer was detected early. Lucky lucky me. So I can’t help but think that finding one small area of mets would be better than finding a large area of mets. But that’s just my opinion. Personally, I would like that one PET scan and brain MRI post treatment, and of course I want them to be clear. I feel that reassurance will go a long way in my overall anxiety level. But I just want the one. I know having tests or bloodwork could open a can of worms I would rather keep closed. My recent CT scan of my lungs proves that to me. “We aren’t sure what we see, don’t think it’s mets, let’s wait 3 months and look again”. Umm…ok….meanwhile…and I dying?? And you are right…as my treatment comes to an end my anxiety level rises. Has this worked? Will I live to see my daughter graduate HS? College? Get married? Be a grandma? I know we don’t have guarantees in this life but dammit…I want one. So here is a truth…my herceptin ends in July…and yeah…I want a PET scan and an MRI of my brain…but I want to wait till the fall to have them done. Why? Because last summer sucked and I would like to not repeat it. I would like to enjoy this summer, thank you very much. And hopefully my follow up lung CT in June will allow me to do that. I know we can never really know what is going to happen next, I know this better now than ever. Debbie, I thank you for taking the time to respond and explain things in a way my med onc can’t seem to do. What you said makes sense and gives me much to think about Best Leah __________________ 39 year old wife, mother of one and nurse. April 20, 2012: Dx Invasive Ductal Carcinoma April 25, 2012: ER+(5%), PR-, HER2+++ May 10, 2012: BRCA 1,2 Negative May 23, 2012: MUGA Scan EF 70% May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed June 5, 2012: Drains OUT! Ahhhh.. June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early" July 10, 2012: Started 6 rounds of TCH with weekly H Sept 5, 2012: MUGA 65% Sept 20, 2012: CAT scan of brain clear! Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013. Nov 19, 2012: Port out! Dec 5, 2012: Started radiation Dec. 10, 2012: MUGA 65% Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER! Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013. Jan 29, 2013: Begin 5 years of Tamoxifen. Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months. Mar 6, 2013: EF 60% May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good! June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms... June 11, 2013: EF 60% June 25, 2013: Last Herceptin. wow... Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures. Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on. Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this. Feb 2014: Tumor markers within normal limits. May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts. Oct 2014: Tumor markers within normal limits. May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt? Nov 2015: Tumor markers WNL. Follow up bone scan clear. Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know. June 2016: Tumor markers WNL. Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia. Nov 2016 Brain MRI clear. Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know. www.onmywaytosurvivorhood.blogspot.com www.thechemobag.com www.facebook.com/thechemobag