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liveit56
liveit56 Member Posts: 196

It has been two years since I was diagnosed with LCIS and to make long story short I could not take the Evista and opted to do self checks and mammograms and so far so good but, today I saw my regular doctor and we got to talking about when I was diagnosed with LCIS and why I refused an MRI.... that was the first I had heard of this.

She said my cancer doctor had told her in the report that I refused the MRI and to taking the Evista....that is so untrue....I told the cancer doctor that I had problems with MRI's because of claustophobia and Meniere's disease and she said that it dosen't sound like I will be doing the MRI. 

 I took the Evista  for five months and had so many side effects that she said my quality of life was being affected by the drug and it was up to me or not to take it and I said I would rather not and she agreed. 

 I am so furious right now and on top of that my regular doctor told me I do have cancer.... I said that I was told I have a marker for cancer and it is confined to one place and she said that is right but I still have cancer none the less and now she is calling my cancer doctor and getting her to set me up for MRI.

.I am so confused....and upset right now....I need someone who understands me....who is right and what should I do????  I just don't know now....I was feeling so good about all the decisions made....did I misunderstand...did I make a big mistake by not getting another opinion?

Comments

  • idaho
    idaho Member Posts: 1,187
    edited April 2009

    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

  • nash
    nash Member Posts: 2,600
    edited April 2009

    LCIS is a marker for an increased chance of getting breast cancer. It is not a precancer like DCIS, nor is it an invasive cancer. Your regular doctor is misinformed, or she is miscommunicating when she states you have cancer because you have LCIS.

  • liveit56
    liveit56 Member Posts: 196
    edited April 2009

    Idaho, thank you so much for responding...I will check into the Open MRI...yes things are getting really furstrating.,,,also my regaular cancer doctor is leaving and didn't even inform me so, settles that problem.

    Nash,you are correct that is what I was told by the cancer doctor.  I just can't uderstand why she said I refused MRI and Evista....I seem to have a lot of misinformation going on and don't know who to trust.

    Thank you both for listening....I am just so confused.

  • Minnesota
    Minnesota Member Posts: 923
    edited April 2009

    Oh my gosh! These doctors sound horrible! We are all mad at them, right along with you! Doesn't it make you wonder why your cancer doc is leaving? Maybe some of her other patients had problems with her too. When I go in the MRI, I put a hand towel over my head and pretend that I'm lying in my bed at home with my head under the covers... Also, it prevents you from seeing the inside of the tube and getting freaked out.

  • nibbsie
    nibbsie Member Posts: 1
    edited April 2009

    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!! 

  • liveit56
    liveit56 Member Posts: 196
    edited April 2009

    Thank you all...I needed to vent and I knew you all would listen and help...which all of you have.

    I think it is time to find new doctors and I am so upset because I thought this was all being handled correctly and I had made my decision based on what I was told...they have raised dought and I can't handle that.  My cancer doctor was one of the best at the hospital I go to and head of the department and she was so nice and gentle with me and explained everything to me so I understood...I just don't understand why she would write may doctor and say that I refused treatment...My doctor on the othe hand, we have always butted heads and I can't beleive she looked me straight in the face and said I do have cancer... Lobular Cancer...I feel like I am in some kind of nightmare.

    Nibbsie, you ask about side effects I had with Evista....they were, horriable hot flashes and night sweats, restless legs and swelling of my legs, feet and hands, joint pain,headaches and nausea and they started about two weeks into taking it and progressed till I stoped taking it.

    I don't know how this is going to end and all I want is the MRI now and get it over with and see what it shows...if they can do one for the breast in an open and wide I should have no problem with the claustrophobia and as for the Meniere's ( inner ear disease with tinnitus and vertigo which is effected by sounds and movement for me ) I will just have to chance it with the loud sounds.

    Thanks again for all your advice and good thoughts....this site and all of you are so helpful when you need someone.

  • leaf
    leaf Member Posts: 8,188
    edited April 2009

    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.

  • liveit56
    liveit56 Member Posts: 196
    edited May 2009

    I found out today that I have been set up for an open MRI...maybe I will finally find out what is really going on.,,,I just hope I can do this...I spoke with the office myself and they seemed really nice and aware of what my problems are and said I will be able to take valium to help my vertigo and they will work with me as much as possible.   I think this will help my peice of mind and when I get the results I am looking for new doctors.

    Thank you all for being there...I am still upset but not as angry, wasted energy and I need all the energy I can get.  It helps to talk and have someone listen. 

    I wish you all the very best and know you are all in my thoughts and prayers.

    Thanks again.

    liveit 

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