I am Scared

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crazynervous
crazynervous Member Posts: 7

Last week I had a needle localized excisional biopsy of right breat for BIRAD 4 suspicious calcifications. The needle localization was painful because I have small dense breasts. I was told that dense breast makes me at risk for bc.

The pathology report found microcalcifications and multiple intaducal papillomas. Now my doctor wants me to go for an MRI. I am worried because these papillomas are a new finding.

The MRi I guess is to see if there are any more. I am worried that cancer could be hiding in the dense tissue.

Any one had advise or similar experience?

Thanks

Comments

  • sciencegal
    sciencegal Member Posts: 1,120
    edited May 2013

    The MRI will show what is going on- and hopefully it is NOT cancer!

    In my case it was, but in many cases it is not. With dense breast tissue, which I have as well, they just can't tell much from the mammograms or ultrasound. MRIs are far better.

    Please go do it as soon as you can schedule it, since you will be too stressed until then.

  • Crescent5
    Crescent5 Member Posts: 442
    edited May 2013

    Yes and no on the reason for the MRI. I was told A) we want a baseline for future screenings since dense breasts don't screen easily via mammogram, and B) they needed to make sure there wasn't something else in there. I will tell you that with all the testing, the MRI was the easiest, and the results were the only positive results I got!

    I did not have papillomas, so I can't speak to that. Stay here, don't google. Someone will be around with a similar experience.

    I know you're scared. It's an absolutely horrible time waiting for answers and having these yucky, disgusting tests. I would only concentrate on one day at a time, and ask for xanax or something similar. This isn't the time to be a tough girl.

    Best of luck {{hugs}}

  • crazynervous
    crazynervous Member Posts: 7
    edited May 2013

    Thank you all so much for your replies. I have been nervous but it is a real comfort to know I am not alone. You are right google is just making me more nervous. There are so many possibilities.  I have to wait 3 months to heal from this biopsy I just had last friday. So my MRI, mammogram and breast sono will be in August Frown I will post my results when I find out.  Prayerfully they are good news. Until then I can only pray to not worry and keep busy.

    Thanks again

  • proudtospin
    proudtospin Member Posts: 5,972
    edited May 2013

    if the docs thought it something really serious, you would not be told to wait 3 months for the next step

    if in doubt, get a second opinion

  • crazynervous
    crazynervous Member Posts: 7
    edited May 2013

    Thank you proudtospin I  appreciate your post. I know I need to relax and just trust God that if it were really a problem MD would have told me to followup much faster. My mind just keeps wondering if the biopsy did not get everything that was there. I will continue to work on trying to control my worry.

    I am taking your advise. I will go for second opinion on Monday. I think this will help me to feel better hearing another doctor say the same thing.

    I will let you know what happens

  • deb1973
    deb1973 Member Posts: 96
    edited June 2013

    Sorry that you are going through this, but it's good you are being proactive. Most likely, everything will be benign, but since you already know you have multiple papillomas it is important to get it all out & the MRI should help with that.

    Sending you good thoughts,

    Deb

    p.s. The MRI was not bad in my opinion. The technician described it as sounding like a cross between road construction & bad techno music. She was right!

  • crazynervous
    crazynervous Member Posts: 7
    edited June 2013

    Thank you very much deb for your compassionate response. I am so glad I found this forum. You ladies have been very helpful in helping me keep calm. I feel much calmer now, just conccerned, knowing I have more follow-up to do. Thanks for the MRI description I trust it will just as you say. That doesn't sound bad at all. I also know taking them out if there are any more would be the best option.

    Thanks again for all of your understanding and support.

    Sonia

  • 2tails
    2tails Member Posts: 86
    edited June 2013

    Crazynervous, I am sending you good thoughts and pray for nothing but good results!

  • crazynervous
    crazynervous Member Posts: 7
    edited June 2013

    Hi everyone,

    Well I went for the second opinion and it was not a very good experience. The doctor said he did not understand why I was concerned about benign results. He stated "I should be glad I don't have cancer (with a smile)". He also told me he would not recommend a MRI it is only for women who have cancer that need to know the extent. He also said "If you want to every test under the sun done then you can but it would not be helpful. The breast MRI may show a lot of things that are benign and I would be biopsied unecessarily. I even told him about my research where papillomas be near cancer he said I don't know who told you that "IT IS BENIGN" He recommended regular mamo and sono in 6 mths.

    To say the least I did not leave out of there very encouraged. I actually felt very stupid for being concerned. I don't want to get tests done unecessarily. How could 2 doctors have such different opinions. I don't feel good about the way he spoke to me either. So now I am praying about whether or not to have the MRI. I am leaning toward it right now but any advise would be appreciated.

    Thanks.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited June 2013

    Run as fast as you can away from that second doc. MRIs are used all the time for screening. I had three opinions, the first missed the duct completely, the second guy said, without even examining me, "you've done all you can I wouldn't worry about it." The third found the offending duct within just a few minutes, did an unscheduled galactogram right then and there, and showed the papilloma to me on his private computer immediately thereafter. I've had three MRIs, they are not a big deal.  I take the meds with them, and it is like a nice nap. Follow your instincts on the screenings.  You probably have nothing to worry about but you must be your own best advocate.

  • crazynervous
    crazynervous Member Posts: 7
    edited June 2013

    Thanks very much for your post, it makes me feel much better. I don't feel so crazy for asking for a second opinion. Shows me there are other docs out there who just don't get it. I have decided to go ahead with the MRI and see what it shows. Like you said, I probably have nothing to fear, so I will keep that in mind. Thanks again for the support and compassion.

  • digrzdtr
    digrzdtr Member Posts: 8
    edited June 2013

    I have been screened for breast cancer since I was 30.   I am now 50 years old, and multiple mammograms, ultrasounds, and MRI's have become routine.  I have extremely dense breasts, have had multiple biopsies causing scarring, am on hormone replacement therapy due to a total hysterectomy, and have both a maternal and paternal family history of breast cancer. I have personally witnessed both my mom and my aunt succomb to this dreadful disease.   Several years ago(2006), I transferred my medical records to Memorial Sloan Kettering Cancer Center in order to participate in the high risk surveillance program. The plan was to significantly reduce my chances of breast cancer and have a bilateral prophylactic mastectomy with reconstruction performed.  After a full year of various testing, doctor visits, and physical and psychological clearance, my surgery was a go. Unfortunately, an auto accident put this plan of hold.  Due to an injury and unforseen spinal surgery (which had a very prolonged and arduous recovery),  I felt it wise at the time not to voluntarily assault my body as I needed to fully recover from this surgical event. However, my concerns/fears regarding breast cancer never dimished. I just moved them further back in my brain. I have been diligent regarding both mammograms and mri's since that time, and fortunately all has been fine.  This past week, I  had my routine mammogram screening at Sloan, and after several magnified films, it was determined that I have microcalcifications warranting yet another biopsy (this will be number 5 for me).  The radiologist attempted a stereotactic needle biopsy, but due to the position of the calcifications, it could not be completed. An appointment has been made for a consultation with my original breast surgeon, Dr. Alexandra Heerdt for June 25, 2013.  Once again my level of fear and concern has escalated to the point of being disfunctional.  At this point I am considering forgoing just the open surgical biopsy and once again moving foward with the double mastectomy with reconstruction which originally included biopsies of both the breast tissue and sentinel nodes. All of us hope and pray that our screening tests come back fine, but when you are told "the doctor needs to speak to you",  even prayers or the most positive of thoughts don't seem to provide any comfort. I am trying as best as I can to carry on with my daily routine and continue to stay as positive as possible, but I feel that I am carrying a time bomb - and it is just a matter of time for it to explode. This is my first time utilizing a forum such as this, and I apologize if I am rambling. Expressing our concerns and looking for advice from those who know and understand what we are going through is a dose of very good medicine.  Any thoughts, comments or advice would be greatly appreciated. Thank you

  • ballet12
    ballet12 Member Posts: 981
    edited June 2013

    Hi digrz--have you spoken to Dr. Heerdt about your concerns?  I am a patient at MSK, and I hear that she is very sensitive to the needs of the patients.  This could be benign.  Would you want to see if that is the case before doing the bilateral?  Did you have any previous biopsies with ADH or LCIS?

    I know how you feel.  I've also had five biopsies (mostly surgical).  I just had a core biopsy done at MSK last week (thankfully benign).  They rush to do these biopsies when we are at risk.

  • digrzdtr
    digrzdtr Member Posts: 8
    edited June 2013

    Hi Ballet

    I had spoken with Dr. Heerdt on the first leg of my journey back in 2005-2006. I had at go through a rigorous evaluation process before being cleared for surgery.  Dr. Heerdt is amazing - as was my entire team from MSK.  Everyone took the time to genuinely listen to my concerns and provide their professional opinions as to what my options were.  Surgery was scheduled, but unfortunately due to an auto accident, I was side-lined.  I thought I was able to put the fear behind me because fortunately, the last few years were uneventful and my screenings were all good.  All it took was one visit - one suspicious test - that sent me spiraling.  Recollecting what my mother went through is something I wouldn't wish on my worst enemy (and I hope I don't have many of them). The fear and anxiety, coupled with my risk factors, are something I cannot ignore. It took me many years to find a medical team that I trust and feel comfortable with - for that I feel blessed.  I know I am at the best possible place, and I truly believe I have the best physicians at my fingertips at MSK. It was explained to me that there is a 25% likelihood that this is cancer.  I personally do not like those odds.  My thought process has always been - when in doubt, take them out.  This latest abnormal screening has just brought my past intentions back into the forefront of my mind. I am scheduled to meet with Dr. Heerdt on Tuesday, June 25.  I thank you for your input and I appreciate your support. 

  • ballet12
    ballet12 Member Posts: 981
    edited June 2013

    Sorry that you have to go through this.  I understand why you would have this anxiety.  I didn't have the same overwhelming family history.  My mom had bc, but was treated aggressively and fortunately she survived.  If you just have microcalcs, most likely the worst outcome would be DCIS.  That's survivable.  Some people do have IDC found on surgical excision, as well as the DCIS (often microinvasion); however, I know that individuals with high genetic risk factors can find more signficant surprises in mastectomies. Do what you think is right for you and will give you peace of mind.  Clearly, having a lumpectomy(s) creates ongoing anxiety about recurrence, there's no doubt. 

    I'm glad you feel confident in your team and best of luck.

  • digrzdtr
    digrzdtr Member Posts: 8
    edited June 2013

    Thank you so much for your understanding 😀

  • JEY
    JEY Member Posts: 3
    edited June 2013

    Hi Crazenervous

    Like you, I am really scared.

    I was diagnosed with low grade DCIS in 2010.  About 10 days after my biopsy I went for surgery to have the DCIS removed, but it had completely disappeared and there was also no evidence of where it had been situated.  I refused to have surgery as I felt it would be too "hit and miss" but the breast surgeon was not happy with my decision.  I sought a second opinion and a MRI was recommended.  Again, no evidence of the DCIS could be located so I decided on a "watchful wait" approach.  I felt confident with my decision especially as my doctor said whatever was there had obviously healed itself.  There were no problems with my 2011 and 2012 mammograms and in those two years I also had my breasts examined by my doctor.  I felt I was being pro-active.  

    Last week I went for my routine annual mammogram and, much to my horror, I was recalled and told that indeterminable microcalcifications were found in that same breast.  Despite this shock news, I do not regret leaving the DCIS untreated in 2010 as there were too many doubts at that time.  I only regret not asking for the biopsy to be checked again.  

    Now my doctor is suggesting a mastectomy to avoid the possibility of recurring problems in my breast.  This suggestion has freaked me out as it seems very radical, but I'll decide after my appointment with breast surgeon (still waiting for appointment date).  

    In the meantime, my mind is in turmoil and I'm finding it hard to sleep.  It doesn't help that what my doctor is saying to me now contradicts her 2010 advice!

    All the best Crazynervous

    JEY (from New Zealand)

  • crazynervous
    crazynervous Member Posts: 7
    edited June 2013

    Hi JEY,

    I can understand why you would be upset by the doctors recommending a mastectomy. My indeterminate calcifications turned out to be benign on biopsy. So it doesn't necessarily mean you have DCIS.  I agree with your decision to wait on a decision until you speak with the breast surgeon. I suggest you find out all of your options first and then make a decision. It is hard not to worry when facing this. I found it hard not to worry as well, but I do hope you keep yourself busy and not let the worry overwhelm you. Don't get too far ahead of where you are right now in your mind with all of the possibilities.  I will be praying that all goes with with the breast surgeon and the decisions to follow. Keep posting here this is a great place to get encouragement and support.

    Sonia

  • digrzdtr
    digrzdtr Member Posts: 8
    edited June 2013

    Just returned from Memorial Sloan Kettering Cancer Center - Dr. Heerdt's professional opinion is to perform an excisional biopsy on July 24th.  I need to have a radioactive seed implant inserted into the area just behind the left nipple on July 19th.  Then it's wait and see.  Dr. Heerdt and I are definitely considering prophylactic mastectomy but she would prefer to do this biopsy first.  If there is not evidence of cancer, she will not remove the lymph nodes at the time of the PBM.  She has put me in contact with Dr. Disa for a plastic surgery consult.  No matter what road we as breast patients take on our journey, and many times the road is bumpy, one of the biggest hurdles is finding a team of doctors that we can trust  - a team that we feel comfortable with. For this alone, I feel very blessed.

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