Overkill treatment on LCIS and supossed high risk conditions

Anonymous

Overkill treatment on LCIS and supossed high risk conditions

Synergy

To start, I was recently advised that the information I was told for for LCIS was incorrect. I have even found out the the risk I was originally told (50 -55 percent) is really only 20% and this was at a supposed national cancer center!

I have had mutiple mammeos ( 7 in almost 2 years) and with all the mammos x-rays, two biopsies, one surgical, 1 totally not necessary.... I now realize that I gave into the fear and did what was suggested.

I was told to have one MRI leading to an unnecessary painful biopsy that got infected, a blown vein ( also not necessary) and was humiliated when I refused another marker that navigated out of place an hour later, or agreeing to having an additional mammeo just to see where it was placed... Then I began to read extensively on this condition (using my Master's degree research skills) which most doctors don't seem to understand or care that much about researching.The drugs suggested are way too dangerous in my opinion and there are no other suggested optons (Big Pharma strikes again!) I know this opinion might seem unpopular on this website but I feel we need some objectivity in the climate of fear that we buy into...What could a clinical exam do when LCIS won't even usually show up on a mammeo because its so small!?

This climate of overtesting and misinformation created unnecessary fear for me for a year. I have a feeling I am not alone... I am going back to a mammeo a year and not giving into the overkill fear on a condition that is NOT and probably won't EVER develop into cancer. I am avoiding way too many unnessary mammeos and being humiliated for refusing (in my case) unnessary testing and very painful procedures. I recently saw the show "Adam Ruins Everything" show on the breast cancer topic and the doctor at the same location (university of Washington) where I was overtreated and humiliated, said we are overtesting and overtreating...I'd love to hear from other members who are realizing the same thing...

Note: this is based on my story and what I have read in medical journals and talking to a medical researcher...

Laleesa

I like your approach! My mother in law also has LCIS. She was diagnosed at 50. She did medication for three mos but got so sick she said she would just take her chances and stopped taking the medication. She did nothing except yearly mamos now she is 83 never had breast cancer! There is validity in what you are saying. But sadly nobody has a crystal ball. Nobody knows who will or will not get breast cancer. Same canbe said for those who don’t have lc

Janeway69

I think the only thing all the clinical breast exams can do is see if it has in fact become a breast cancer that has spread and is palpable. But such is the same for all of us if we get breast cancer.And some things are not palpable anyway so..

Thank you for standing up to fear. I really needed to read this.

Lea7777

I would be interested in who/what gave you the 20% and the 50% #s. There seems to be a huge discrepancy in risk assessments. You're right this is a topic that generates fear.

One reason you may feel "alone" is that not that many people have LCIS. There is a forum on this site devoted specifically to LCIS.

The reason for the exams such as mammograms would not be to detect LCIS, but to detect cancer, since LCIS increases your risk of cancer.

Your view is more popular than you may think. Thank you for posting.

NicolaSue

Hello Synergy,

Fascinating thread. Like you I have a research degree and put that to good use after the LCIS diagnosis. As you say, odds vary by clinician. I could frame all the letters I've had where doctors speak authoritatively on my chances of an invasive BC ...and yet they all give different odds.

I've gone with a middle road approach. I am under a specialist cancer centre rather than a local hospital (I'm in the UK). I will have yearly mammos but nothing else. The fact remains that they know LCIS puts you at higher risk but no one can say accurately what your actual risk is. So some surveillance makes sense. I am not however taking chemo prevention.