A question for CypressCynthia...

LoveBabyJesus

Hi Cynthia! I hope you're doing well.

I had a question for you. I know you were dx at 33. I was dx at 32, last year. Did you do annual check-ups, always? If so, what kind of tests did you do after you finsished treatments? Was your tumor estrogen+ (by a lot)? I pray I do as well as you have been. I know you've also been dealing with mets, but this was after 20 years, and you've been doing relatively well which is always encouraging (to all of us).

Please let me know about what kinds of tests you followed up with since you last finished treatment (first round) until this date.

Hugs to you. And thank you for inspiring us.

VickiSam

bumping up ...
Our CC is full of informative research, practical experience and has
the heart of a LION!



Vicki Sam

CypressCynthia

Sorry I missed your post.
Sorry I missed your post. Work has been very busy. Thank you for your kind words!

I was diagnosed at 33 and my tumor was 3A (large tumor, 4 nodes). I had a mastectomy, chemo, radiation and tamoxifen. After treatment, I saw oncologist frequently for awhile, then annually. After about 12 years, he said I only needed to see him if I had a problem. I had not seen him in a few years when I began having the mets symptoms.

My original tumor was highly ER and PR positive. My mets is ER+, PR negative.

After original diagnosis, I believe I was followed with labwork (markers, CBC, complete metabolic panel)--the usual. Maybe I had a few bone scans. I promise you it is so hard to remember now! My scans and markers were always normal.

In 2005, I broke at least 3-4 ribs. We immediately did markers, PET scan, bone scan. Markers were normal and scans inconclusive. In 2009, I ended up in ER with shortness of breath and extreme rib pain. Another bone scan and this time radiologist called it bone mets. I then had 2 of the 3-4 ribs biopsied and both biopsied were + for breast cancer mets.

Since mets, I have been seeing onc at least every 3 months. I do get the usual labwork each time (markers, CBC, CMP). I have had about 3 PET scans since the mets, but none in last year. Last one (at MD Anderson)showed that I was in remission, so I may not have another unless I have a problem.

I believe I have been blessed with a very responsive tumor, but I am also super compliant. As a health care provider, I know that every drug has an adverse effect, so I have tried my best to be compliant and manage the adverse effects. Luckily, none of my adverse effects have been life threatening.

My dad was a physician and local faculty and helped guide me to very reputable care. I think it really helps to be with a team you trust.

Also, after being bombarded with research from my physician sister about alcohol having deleterious effects on breast cancer survival, I gave up all alcohol. For a number of years I was rarely drinking, but now I just don't. I believe alcohol can be a factor in ER+ tumors and recurrence. Don't shoot the messenger.

I hope some of this helps. I wish I could remember more.... I do strongly believe that most of this is out of our control and we all struggle to do the very best that we can with our very individual diagnoses.