Advanced breast cancer (lobilliar) but in the stomach and colon

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IRONSIDE
IRONSIDE Member Posts: 5
edited June 2014 in Working on Your Fitness

Good morning everyone, I am trying to find somebody who was diagnosed with lobilliar (not sure I have spelt that correctly) I had mammograms every year for the past 22 years only to be now told that lobilliar does not show up on mammograms I had a pet scan and many other tests nothing showed up. My symptoms were vomiting ,stomach pain and diarreah I was mis diagnosed 5 times as having gastric problems and sent back home..I went back to hospital when I could not walk one morning and had lost 8 pounds in one week. I then had further tests tubes down my thoat up my back passage ...two tumours were found...after biopsy results all came back negative,,,loss of weight continued along with pain the doctors were baffle...I was operated on two days later and tumors were removed 'results ..advanced breast cancer stage 1V...started chemo six weeks later....lots of complications I am at the moment cancer free and have started Femara ...They still have not found the root of my cancer in my breasts. 

The doctors believe because I took Tamoxifen for breast pain and not breast cancer for five years the Tamoxifen stopped the tumour reaching my breasts..but we shall never know it is just a theory.

Am having a lot of problems with Femara swollen painful breasts, I cannot unlock my knees in the morning to walk '.pains in my thumbs and the tiredness is worse than the tiredness from chemo and I was on a very aggresive treatment.

They have no idea how to monitor this cancer as it does not show up ..the doctor told me the only way I shall know if it has returned is when I have symptons and as before the symptons will be in the advanced stages as lobilliar is a very slow growing cancer.

I used to be a fitness fanatic, yoga,walking dancing and just enjoyed life. I have been operated on the stomach four times now in less than a year and have been told it takes time to recover. I just want my life back. The scar tissue is very painful and I have tried all kinds of creams plus vaseline no joy. I am due to see my oncologist in a weeks time to discuss all of these issues, I would like to stop the Femara but from what I have read so far the risks are to graet.

Thanks for listening to me and if there is anyone out there who has had the same experience would love to hear from you.

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  • Angel10
    Angel10 Member Posts: 682
    edited July 2009

    Ironside,

     I had tubulolobular and infiltrating ductal carcinoma...however 4 of my sisters had lobular BC..They all (but not I) also tested positive for a genetic mutation called cdh1 or HDGC for hereditary diffuse gastric cancer.  It is a very rare form of genetic mutation with a high degree of gastric cancer and breast cancer, as well as colon cancer, too.  Have any other of your family members been diagnosed with these types of cancers? My dad died from stomach cancer about 15 years ago, but we were not aware of the mutation at that time. Now, all of 10 sibs have tested for this mutation. 8 out of 11 tested positive. None of my sisters BC's were caught under conventional methods...not even with MRI's....so it can be difficult.  There is much more info available if you need...  If you want more....send me a PM.

    Good luck! 

    Angel

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