When do you say Enough with the testing!

Hi - I've been going every 6 months for a long time. I also get very tired of the tests, the drama, the ambiguity (probably benign, we think everything is ok, etc) - it is so tempting to skip an appointment. I don't even tell my husband anymore when I have tests, I feel like the "boy who cried wolf" for getting everyone excited and upset so many times. I go alone, I tell no one. This board has been a godsend for me. 

I always think of it this way - if I skip and go back 6 months or a year from now, and something is wrong, will I let myself off of the hook or beat myself up terribly? Do I owe it to my child and my parents to get my a$$ in there even when I don't want to - yes, it's my life, but is it selfish to act recklessly and ignore the doctor's advice for my own convenience or to avoid stress? 

This is very difficult, I totally understand. In the end it IS our bodies and our choice.  Just make an informed choice that you can live with and defend. Hugs to you! 

For me, it was right after the 3rd call back. The 200 mile round trip to a reputable place and $1,000

evaluation each time factored in. So did working as an oncology nurse for some years a very long time ago. Mostly pediatrics but two years with adults. What I state reflects my personal opinion.



Of course there are advances in detection and treatment but as always sometimes test results are wrong, doctors disagree on findings, important items slip through the cracks and the ever changing opinion of what to do evolves. I have seen oncologist, really good ones, feverently disagree about a position regarding treatment/care.



Not so long ago, a woman had to get a mastectomy, now we have to fight for that option. Perhaps the pendulum will be less extreme some day and a woman can choose whether a mastectomy makes better sense for her life rather than constant unremitting expensive fallible surveillance. Plus medication, costly and has side effects, some can be deadly.



Women know best what we're willing to risk and tolerate. The recommended aggressive screening may be all for naught, one may not ever develop additional in situ, invasive or advanced cancer. The concern is you will. I'd rather err on the side of no breast than a failure of the body that already signaled trouble or a weak link in surveillance. Or a change in opinion.



Bottom line, an option to disengage from testing should be respected and valued as reasonable. If the condition requires frequent call backs and evaluation, it's serious. Why must it be testing or walk away with the high risk?

Women who submit to surveillance do all women a favor. Data from their experience can be used in future recommendations for treatment. For my daughters sake, I'm grateful. Me? Nope, remaining years will not be spent chasing LCIS, calcifications, ADH, ALH, masses, etc. I was promised the biopsies would continue, leaving more hiding places for cancer. Thankfully, I was able to chose mastectomy. Too bad the standard of options isn't universally available.

carpediem1965...you are absolutely on target with the philospohy of making it a good 6 months.  I try to do that but this past year has been tough.  Too many other issues that got in the way of enjoying each 6 months.  Hoping for the best in June.

hi there,

after 4 years of high risk survellience, 10 biopsies and finally a LCIS diagnosis, the decision was made for me. enough was enough for me and i am surprisingly relieved to be pursuing a mastectomy.  this type of stress has really negatively affected my life and i feel in control for the first time in 4 years.  everyone is different though.  best of luck to you... 

I do think they sometimes overtest but I also believe they do because they would rather rule on the side of caution and maybe an effort to avoid malpractice suits as well. I have a friend and a sister who have have had so many scans it is unreal. I have not had to have one. My bc was Stage 2, grade 1 and my oncotype test came back at 11. No guarantees but the outlook is favorable. My sister asked me why I didnt have the scans she had to have(she has lobular inv carcinoma - they did a mx) and the only thing I can say to her is neither the oncologist or my BS said I needed one. I guess that is a good thing, bad thing. I do think though that since the tests are so expensive doctors need to look at either combining tests or find an alternative way to get the results they need. Of course all of us will do any and everything to fight this beast but we dont want to be in the poorhouse in the meantime. diane

Hi Clevelandgirl & carpedium,

I had 6 stereotactic biopsies due to suspicious calcifications, 1 MRI guided biopsy due to a nodule and 4 excisional biopsies (for atypia) ...so actually 11 in four years! Some were totally B9 but most were adl.  Last was fea (focal ep. atypia) which lead to excisional and LCIS diagnosis.  The way I see it is that each biopsy got more atypical and my mental health was suffering.  Each biopsy got progressively harder to deal with.  I actually told my BS as they were taking me into the OR for the last surgery that if this pathology comes up anything but totally B9, I wanted a mastectomy.  Low and behold, LCIS was diagnosed.  So, for me it was relief because the decision was kind of made for me.  This in addition to the fact that my mother has BC in her 30's, dense breasts.... My BS was totally on the same page and told me that the biopsies are not going to end here.  That was the last straw for me. I am no expert on LCIS, but it is a high risk condition that puts both breasts in danger of BC. I am not the type of person that can continue with this high risk survellience so I chose pbmx.

Carpedium~  I have my consults next week.  I was thinking of doing in in the summer, but my BS thought I should just do it now and enjoy my summer.  I am leaning towards nipple sparing direct to implant.

Best of luck, ladies~ 

I  

I agree with prophylactic mastectomy - all that worrying for years - it takes a toll.  I had it done for ALH - was tired of all the biopsies, strong family history and worrying!!

This is exactly why I'm afraid to initiate MRI screening. 1) I have anxiety to begin with 2) the MRI scan itself will be unpleasant 3) they could find several potentially harmless spots that need further evaluation. It's just stress on top of stress on top of stress.

I'm sorry you are going through this. I applaud you for getting these tests done. I'm too chicken for an MRI even though it's the only useful test available to me. Isn't it kinda sad that the only useful test for young women is an MRI? Seriously? I've always felt like MRI's should be reserved for emergencies. Breast cancer prevention and screening have come a long way... but I really wish there was a less harrowing type of screening test. BEST of luck!

OMG, I have felt the same way.  I was finally cleared to annual mammograms last year and will be going for my first annual in a couple of months.  I have detected a new lump but I am taking my own watch and see approach.  At one point after having mammograms every 3 months and BIRADS 4C urgent calls from the doctor, stereotactic biopsy etc. I secretly wished that they would find DCIS so I could just get the girls cut off, do reconstruction surgery and be done with it.  It gets so tiring.  I too no longer tell anyone when I have a doctors appointment or any concerns.  I only share with these boards.  After a while you feel like a drama queen and wonder if people think you are just looking for attention.

I also have had family members and friends who were diagnosed with BC and then I felt guilty because my tests were B9 and there's weren't.  Like survivors guilt I guess.  This new lump and the thermography test I had done last week.....I haven't even told my boyfriend of 16 years.  No friends, no family, nobody.  I have decided to not share any new developments or test results with anyone unless of course they come back BC and I have to have surgery.  The stress of people worrying about me is worse then the stress of worrying myself about test results.

 Thank you ladies for sharing this, I feel a lot less like a freak now and once again know that I am not alone in my thoughts and feelings.

Oregongirl I do hope this club is out of bounds for u--no one is happy to be here that's for sure--but it does help for those who are. I've learned alot, well I don't usually retain it but everyone is so knowin and caring,  I'm still having tests  every 3 months, but I miss alot so it ends up maybe 4 months. it is a pain but I guess the choice is ours so if u do it that's how we live now.  Good luck