Back again with questions

How does your regular doctor KNOW you have cancer again? THe marker could be wrong... It does sound like you maybe should get another cancer doc.  I would explain to your doctor that you did not REFUSE an MRI, and that you did TRY Evista, and that you don't appreciate him telling lies.  Maybe you will feel better?  THere is a new MRI machine out now called an "open MRI', If you are claustrophobic I have heard it is a lot easier to tolerate.  You can probably find out if there is one near you by looking on-line for "open MRI's".  Arent' doctors so frustrating!!!???  hang in there, Tami

Hi!  I just read your post.  I was first diagnosed with LCIS 11 years ago, and had LCIS show up in a biopsy I had last month.  I also could not tolerate Evista. I am curious as to your symptoms from the drug.  I had terrible joint pain where I could barely walk.  I then went on to Tamoxifen.  I was so afraid that I would not do well on that, but, surprisingly, I did great!!  In fact, I was sad to go off it after 5 years because I felt so good taking it!!  So maybe you can try that drug.

A few months ago, when it was time for my mamo, my doctor wanted me to have a baseline ultrasound and MRI.  My mamo was fine, my ultrasound was normal, but the MRI showed an area about 5 mm.  I then had to have a biopsy under the MRI because the area was only seen in the MRI.  That biopsy showed that I had severe atypia-cells that were on the cusp of turning to ductal carcinoma.  I then had to have a lumpectomy to make sure no cells remained.  What was interesting is that the final report showed mild LCIS.  My doctor told me that the mildness showed how well the Tamoxifen worked!!  

Now about the MRI-in my case, the MRI prevented me from a more serious breast cancer.  If I didn't have the MRI, those cells wouldn't have been seen until a tumor formed.  I avoided ductal carcinoma!!  I had the first MRI in my breast center, and it was very confining,  I had the biopsy in the hospital, and what a difference in the machine!!  It was wide, not confining, and I went in feet first as opposed to head first.  I did not feel claustrophobic at all.   So I would suggest that you look into the type of machine, and if you can go in feet first.

I hope I have helped, and good luck!! 

Wow, - I would be shocked too, liveit.

The term 'cancer' is not a line in the sand.  Cancer means 'uncontrolled growth'.  If you compare cancer cells in a person with advanced cancer, and  normal cells in a 'normal healthy' person, you will see that some cells look clearly cancerous, and some cells look clearly normal.  'Uncontrolled' is not a 'line in the sand'.  Different people can define LCIS differently, and classify cells differently.  There is not always uniform agreement.

Its probably easier than trying to determine at what age someone stops being 'young', and when they start to be 'old'.  Different people will say different things.

Most oncologists consider LCIS as a benign condition.  That means that some oncologists do not.  That means, as is most things LCIS, there is controversy.

"The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer. This risk remains elevated even beyond 2 decades, and most of the subsequent cancers are ductal rather than lobular. LCIS is usually multicentric and is frequently bilateral."http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

LCIS is now thought to mostly be a marker of increased risk of breast cancer.  From what I've read, most studies estimate that over half of people with LCIS will never progress to having actual invasive breast cancer, or LCIS (perhaps unless they have other factors such as BRCA or a significant family history.) But many people do define that an (no one seems to want to put a number on this) small number of people will have their LCIS progress to invasive or DCIS.

I wouldn't want to have an MRI if I was ill, but it was tolerable for me.  For me, it was like being right next to a jackhammer. When I had an MRI (spine - not breast) - they put a damp cloth over my eyes, so I couldn't tell how close I was to the top of the hole, so I couldn't get claustrophobic.  A person was there at all times, so I could communicate with her if I was in trouble at any time.

Its just plain awful when they have the wrong data in your charts!  Just wait until you have a workman's comp incident.  I told them I had LCIS.  They wrote in the report that I had tumors and lumps all over.  I never said the words 'tumor' or 'lump' - I've never had any!  I think the person who took my history was just trying to say all my issues were due to non-work conditions.