Scared to death

djdillon2012
djdillon2012 Member Posts: 2
in Breast Cancer #1
Just found out that I have invasive lobular carcinoma in my left breast. Tuesday I had a lumpectomy and thought I was going to the oncology this Thursday to start radiation. Boy was I wrong, instead I was told that I should have a mastectomy on my breast and maybe have my other removed because I'm A high risk for it spreading to my right! Waiting for my genetic test to come back (praying that it is negitive)so I don't pass this on to my 11 yr daughter and 19 yr son. WHY can't I do radiation and watch it closely? Has anybody had this cancer and has done this or does this type not give you a choice?

Comments

  • WJGardner_Dec2009
    WJGardner_Dec2009 Member Posts: 50
    #2
    Prayers
    I am sorry to hear about your results. My prayers are with you and that the genetic test is negative. I will keep you in my thoughts and prayers. The thought of passing the gene to your children is hard. I have a 25 year old son and I worry about him. My Grandfather on my Mothers side had breast
    cancer and had a radical mastectomy and prostate cancer. He has since passed away. He was 86. He and I are the only ones diagnosed with cancer on either side of the families that I am aware of anyway. Makes one wonder. I was supposed to have the BRCA test yet haven't heard if I am approved or not.

    In My Prayers
    Wanda
  • pginsburg
    pginsburg Member Posts: 8
    #3
    Hi DJ
    After a needle biopsy 8/2010, I was initially diagnosed with invasive lobular carcinoma. After 2 lumpectomies with unclear margins, I had a mastectomy 12/2010. The pathology reports after the 2 lumpectomies also showed DCIS and IDC. The pathology report after the mastectomy showed DCIS in a whole other quadrant. Nothing showed up on the mammogram, sonogram or MRI. In hind sight, as scared as I was, I am glad the mastectomy was done. I was also told by the surgeon and oncologist that having invasive lobular carcinoma increases your risk of developing cancer in the other breast by up to 40%. After consulting with the two doctors, it was determined that I would not have the mastectomy of the other breast and be followed closely. If you are estrogen positive, you can take tamoxifen or arimidex to decrease your risk. There may be other factors that come into play with you, but you will have to wait to get the whole picture. God bless and best of luck to you.
  • roseann4
    roseann4 Member Posts: 992 Member
    #4
    pginsburg said:

    Hi DJ
    After a needle biopsy 8/2010, I was initially diagnosed with invasive lobular carcinoma. After 2 lumpectomies with unclear margins, I had a mastectomy 12/2010. The pathology reports after the 2 lumpectomies also showed DCIS and IDC. The pathology report after the mastectomy showed DCIS in a whole other quadrant. Nothing showed up on the mammogram, sonogram or MRI. In hind sight, as scared as I was, I am glad the mastectomy was done. I was also told by the surgeon and oncologist that having invasive lobular carcinoma increases your risk of developing cancer in the other breast by up to 40%. After consulting with the two doctors, it was determined that I would not have the mastectomy of the other breast and be followed closely. If you are estrogen positive, you can take tamoxifen or arimidex to decrease your risk. There may be other factors that come into play with you, but you will have to wait to get the whole picture. God bless and best of luck to you.

    I would recommend getting a second opinion.
    What makes you at high risk for getting bc in the other breast? What test showed that? I had the same type of cancer and until the OncoType test came back they couldn't tell me my risk. You haven't had the genetic results either. Curious.

    Roseann
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
    #5
    I am the first one in my
    I am the first one in my family to have breast cancer and i,m 69 was 67 when diagnosed.I had a bilateral mastectomy the cancer was on the left but because of being high risk of getting it in the right i chose that for me and have not regretted it.I,m not sure why they did a lumpectomy Tuesday and then Thursday said you needed a mastectomy what kind of test did they do before all this.Strength,courage and hope Frankie
    I agree also get a second opinion.
  • serenity92
    serenity92 Member Posts: 84
    #6
    Frankie Shannon said:

    I am the first one in my
    I am the first one in my family to have breast cancer and i,m 69 was 67 when diagnosed.I had a bilateral mastectomy the cancer was on the left but because of being high risk of getting it in the right i chose that for me and have not regretted it.I,m not sure why they did a lumpectomy Tuesday and then Thursday said you needed a mastectomy what kind of test did they do before all this.Strength,courage and hope Frankie
    I agree also get a second opinion.

    I had invasive lobular
    I had invasive lobular carcinoma. We first talked about a lumpectomy, but the feel of the mass told the surgeon we were looking at a masectomy. The second choice was than one breast or both. My cancers were very hard to detect. I found it from a change in my breast tissues. As I also have leukemia I mentioned it on my regular onco visit. I had four manual exams, three mammograms, three ultrasounds and a breast MRI that were all inconclusive. (At leading cancer centers) Finally a breast MRI biopsy showed what they thought was a small mass. Evidently lobular has a slightly greater chance of spreading to the other breast. And it is harder to detect as it usually does not form a calcification. The surgeon said I would need breast mris every three months to look for spread to the other breast as it did not show up on mammograms. I knew I could not afford that, nor could I handle the stress of waiting for that awful MRI every three months. Well surgery told them alot more. The cancer turned out to be much more aggresive and the tumor much larger (4 cm) so I am confident I made the right decision. Tests showed chemo would not work for me and also that I cannot metabolize tamoxofin so I had my ovaries out in oct. Now we are just trying to 'rebuild'. No regrets so far. I just want to be done with this part of my journey. With the leukemia I will never be out of treatment but at least it would be less visits...Blessings. Jayne
  • roseann4
    roseann4 Member Posts: 992 Member
    #7
    serenity92 said:

    I had invasive lobular
    I had invasive lobular carcinoma. We first talked about a lumpectomy, but the feel of the mass told the surgeon we were looking at a masectomy. The second choice was than one breast or both. My cancers were very hard to detect. I found it from a change in my breast tissues. As I also have leukemia I mentioned it on my regular onco visit. I had four manual exams, three mammograms, three ultrasounds and a breast MRI that were all inconclusive. (At leading cancer centers) Finally a breast MRI biopsy showed what they thought was a small mass. Evidently lobular has a slightly greater chance of spreading to the other breast. And it is harder to detect as it usually does not form a calcification. The surgeon said I would need breast mris every three months to look for spread to the other breast as it did not show up on mammograms. I knew I could not afford that, nor could I handle the stress of waiting for that awful MRI every three months. Well surgery told them alot more. The cancer turned out to be much more aggresive and the tumor much larger (4 cm) so I am confident I made the right decision. Tests showed chemo would not work for me and also that I cannot metabolize tamoxofin so I had my ovaries out in oct. Now we are just trying to 'rebuild'. No regrets so far. I just want to be done with this part of my journey. With the leukemia I will never be out of treatment but at least it would be less visits...Blessings. Jayne

    Wow!
    I never heard that lobular was more aggressive. My OncoTypedx score was low and there was no mention of the likelihood of spread to the other breast. Hmm. I'll have to ask my onc at my next appointment. I did know lobular is more difficult to detect.

    Roseann
  • Jobi
    Jobi Member Posts: 211
    #8
    I am sorry to hear about
    I am sorry to hear about your case. I don't have the same type, but I can relate to first being told that I needed a lumpectomy and then a few days later getting a rather cold and informal call at work telling me that cancer cells were found else where. I knew that meant mastectomy. I was scared, terrified, and angry. I too took the gene test and found that it was negative. I hope and pray for the same results for you. Good luck.
  • serenity92
    serenity92 Member Posts: 84
    #9
    Jobi said:

    I am sorry to hear about
    I am sorry to hear about your case. I don't have the same type, but I can relate to first being told that I needed a lumpectomy and then a few days later getting a rather cold and informal call at work telling me that cancer cells were found else where. I knew that meant mastectomy. I was scared, terrified, and angry. I too took the gene test and found that it was negative. I hope and pray for the same results for you. Good luck.

    Speaking just for
    Speaking just for myself...MY cancer turned out to be more aggresive than first thought and was very difficult to detect and diagnose. I have no idea if that is common or not...just sharing my experiance. Jayne
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #10
    serenity92 said:

    Speaking just for
    Speaking just for myself...MY cancer turned out to be more aggresive than first thought and was very difficult to detect and diagnose. I have no idea if that is common or not...just sharing my experiance. Jayne

    I also don't understand
    I also don't understand why doing a lumpectomy then saying you need a masectomy.I would be upset. Sounds like you've got alot going on. What a shock. They want to make a change in just 2 days. That is a huge and traumatic change.

    I had a lumpectomy.Then almost 1 month later I had a surgery to check margins.Just to make sure all the cancer was gone.At first I wondered WHY another surgery but if it was to double check things I was OK with it. Two days before that surgery I found a lump. Thankfully it was benign.

    Whatever is decided I wish you the best. This has to be hard on your nerves.Will be thinking of you.Please keep us posted on what's next.

    Lynn Smith

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