After Herceptin

Elizabethtx · 06-08-2011, 05:56 AM

My story is similar to yours. Asymptomatic until I felt the lump, in sentinel lymphs. I asked the same questions and was told no scans unless warranted. I have finished all treatments except continuing on Tamoxifen. The onc said 2weeks of persistent pain should cause you to get a specific check up, otherwise blood work only every 4 months for now! Yes, I agree it seems scary not to confirm NED. I will wait and pray myself through this like everyone else!

1rarebird · 06-08-2011, 02:08 PM

Helen--It sounds like your oncologist and mine are singing from the same song book. Even though mine has done tumor markers and other blood work on me twice since I finished Herceptin last summer, he told me that my body will tell me if I metastasize or otherwise recur. Any lumps that I notice or persistent pain I experience will be the clues, according to the good doctor. My doctor also told me that the statistical evidence points to no correlation between the time a recurrence is first detected and overall survival.

So I guess we watch and pray as the days roll by. Each one is a precious gift and we can look forward to the time in the future others on this boards have said will come when our anxiety diminishes. --bird

Helen G · 06-12-2011, 07:00 PM

It is so shocking but at least I am not alone. Thanks for posting. Stay strong...

evergreen · 05-01-2012, 08:01 PM

My oncologist says the same thing, that the research shows no benefit for regular testing for mets and that survival is not improved by starting treatment before symptoms occur. She says if I am feeling good, why would I want to start chemo sooner, if there is no proven benefit to starting earlier. She says also that psychologically, we need to get away from constant reminders of illness, and that we should concentrate on each new day and the joy of life, not the prospect of "the end". I admit to having a hard time doing this, but I am trying....

1rarebird · 06-08-2011, 02:14 PM

Helen--It sounds like your oncologist and mine are singing from the same song book. Even though mine has done tumor markers and other blood work on me twice since I finished Herceptin last summer, he told me that my body will tell me if I metastasize or otherwise recur. Any lumps that I notice or persistent pain I experience will be the clues, according to the good doctor. My doctor also told me that the statistical evidence points to no correlation between the time a recurrence is first detected and overall survival.

(I will note that my surgeon at my one year anniversary did order a PET for me since he wanted to compare it to the one done at my diagnosis. It showed no changes but did confirm I still had a serious thyroid problem that eventually led to another surgery.)

So I guess we watch and pray as the days roll by. Each one is a precious gift and we can look forward to the time in the future others on this board have said will come when our anxiety diminishes. --bird

Jackie07 · 06-08-2011, 08:40 PM

Hi Helen,

Congratulations on completing your Herceptin treatment today! Perhaps both oncologists (Rarebird's and yours) are familiar with the study cited below:

Curr Oncol Rep. 2008 Jan;10(1):38-46.
Breast cancer follow-up in the adjuvant setting.

Khatcheressian J, Swainey C.
Source

Division of Hematology/Oncology and Palliative Care, Massey Cancer Center of Virginia Commonwealth University, PO Box 980230, 1101 East Marshall Street, Richmond, VA 23298, USA. jkhatche@vcu.edu

Abstract

Breast cancer may recur through 15 years and beyond after diagnosis; thus, breast cancer patients require long-term follow-up after adjuvant treatment to detect recurrent disease.

History taking, physical examination, and regular mammography are still the foundation of appropriate breast cancer follow-up in the adjuvant setting. Clearly, breast MRI has a role in certain high-risk patients, but in moderate-risk patients, the decision to use MRI must be based on the complexity of the clinical scenario.

Other routine imaging studies (CT, positron emission tomography, and bone scans) and laboratory testing--including tumor marker assessments--in asymptomatic patients have not demonstrated an improvement in survival, quality of life, toxicity, or cost-effectiveness.

Survivorship issues are also an inherent part of breast cancer follow-up; physicians should make every effort to address supportive care issues unique to breast cancer survivors including hot flashes, bone health, neuropathy, and risk-reduction strategies.

Helen G · 06-12-2011, 06:57 PM

The one thing my doctor did say was that now having three or less lymph node involvement has the same prognosis as having no lymph node involvement. This however does not make me feel secure. As I had felt one lump, and I actually had three tumors.