mammograms after mastectomy

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maryh
maryh Member Posts: 33
edited March 2014 in Breast Cancer #1
DCIS, high grade - bilaterial mastectomy 4 yras ago - no reconstruction, no spread, no drugs, no radiation, no chemo! Extremely fortunate to have had a top-notch radiologist and to have been in Houston, TX.

An educational series I attented in TX said researchers were advising follow-up mammograms occasionally for DCIS patients, even those without reconstruction. The theory is, that no surgeon can guarantee that all the breast tissue was removed. If tissue remains, there presumedly is ducts. Therefore, a possible reoccurance. Makes since to me! I have had two annual m-grams and an ultra-sound. Negative! Now I am in another State and can not find any support.

It is incrediable how differently people/doctors think about and treat BC. Of the 15 ladies in the local support group, only 2 knew what DCIS was. I was critized for having mastectomies and for not having reconstruction. I was critized for still wanting mammograms - "a waste of good money and the doctor's time". The ladies in my TX support group supported each other. Here I was attacked because I was "not like them" since I did not have chemo/drugs/radiation, etc. No, I have not been back. I have found another group in a town over an hour away. The first meeting seemed positive. I'm keeping a low profile until I figure them out.

The only doctor I am extablished with so far is my Internist. He said that if it would make me feel better, he would write the orders for the mammograms. He did say that he spoke to a BC Center - Breast Surgeon and the Radiologist. Neither agreed that it was necessary. The second breast center I spoke with agreed. To be fair, both radiologist said they would read the m-grams if I insisted on having them. Both centers said they had never m-gramed mastectomy patients before.

With these attitudes, I feel that I would not get good pictures, nor get the atention to the films that I want. I feel that they are just apeasing me.

I used to be a very positive up-beat person. Now I feel lost and along with my health issues. In a few months I have my 4 yr anniversary...then the dreaded countdown begins for that "5th year". I know my chances are excellent for no reoccurrance, but it is still constantly on my mind. I have decided that I will wait on m-grams and go back to TX for my 5 year check-up. That plan helps me stay sane.

I am really having a down day. Although I am still in contact with my TX group, I have no local BC sisters to confide in.

If anyone has any kind words of support, I could sure them to get thru the day.

Thanks for listening.
Mary

Comments

  • seeknpeace
    seeknpeace Member Posts: 259
    #2
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    OMG Mary. How horrible...these ppl must have all just been so beat up emotionally to be so grossly uncaring and critical. I am so so sorry that you had to experience this.

    To support you, I also had high nuclear grade 3, comedo cancer with extensive necrosis...2.5 cm and mine was dcis. That these ppl had never even hears of dcis is astounding to me. And, like you I had a bilateral mast., but, I did opt for tram flap recontruct at time of mast. My sentinel node was done and the nodes taken were clear.

    I was told, as were you, that a mastectomy is not a cure. There is indeed breast tissue left behind. There are no guarantees, and your fear, concern are normal. Yes, some ppl have it worse. And, some better, but, to each person, the feelings that they have are their own and should NEVER be belittled. The analogy of the person who was upset with no shoes til they met the person with no feet is not right, imo. No one should ever be made to feel bad for their cancer fear after diagnosis. We all carry the same possibilities, just some more probabilities. I have met several ppl who had only dcis and had spread, something was missed. So, we still must be diligent.

    I am one year out. My oncologist told me that they likely spread is in the scars. I usually just go about my business, forgetting that I may have a recurrance, not likely, but, no one can guarantee me that. You are right in your feelings and if you need validation, I support you 100% whatever your decision.

    Jan
  • littlelindalu
    littlelindalu Member Posts: 25
    #3
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    Dear Mary -

    Though my bilateral mastectomies were prophylactic (preventative for high risk) I lived with your fears for the preceding 13 yrs while I was being watched (I was in my teens when I started forming tumor-like growths). Having lived with that awful "cloud" hanging overhead for many years, I hope you find it reassuring to hear that it gets easier with time and as you keep telling yourself that you are taking good care of yourself and doing all that you can to be healthy. I am so sorry that you met such ignorant and unsupportive women. I live in Tx and plan to go to Houston myself for another surgery -- your glowing statements about Houston confirm what I have read about MD Anderson and Baylor.

    It sounds like your gut has already told you to seek out dr/medical staff that you trust and whose advice your respect more. I applaud your ability to follow your good instincts. I believe that you will feel better and better about your treatment and prognosis as you continue to take control of your future.

    Perhaps the ACS can help you find the help you need -- or the drs who treated you in Houston may be able to refer you to someone? Are there any NCI designated breast cancer centers within a reasonable distance from you?

    Feel free to email me if you want to talk again. I hope that something(s) I said made you feel better, just as your Houston comments made me feel better.

    Regards,
    Linda
  • SusanAnne
    SusanAnne Member Posts: 245
    #4
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    Mary,

    Exactly which city are you now in? I hope it's not near me! You sound like you have a good handle on your dx, now you just have to find new doctors with like ideas. My only suggestion to you would be to obtain copies of your last mamograms to bring with you to your new center. You might have a few interviews ahead of you, but I'm sure you'll be able to find new doctors. Good luck.
    Susan
  • madismamaw
    madismamaw Member Posts: 5
    #5
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    littlelindalu said:

    Dear Mary -

    Though my bilateral mastectomies were prophylactic (preventative for high risk) I lived with your fears for the preceding 13 yrs while I was being watched (I was in my teens when I started forming tumor-like growths). Having lived with that awful "cloud" hanging overhead for many years, I hope you find it reassuring to hear that it gets easier with time and as you keep telling yourself that you are taking good care of yourself and doing all that you can to be healthy. I am so sorry that you met such ignorant and unsupportive women. I live in Tx and plan to go to Houston myself for another surgery -- your glowing statements about Houston confirm what I have read about MD Anderson and Baylor.

    It sounds like your gut has already told you to seek out dr/medical staff that you trust and whose advice your respect more. I applaud your ability to follow your good instincts. I believe that you will feel better and better about your treatment and prognosis as you continue to take control of your future.

    Perhaps the ACS can help you find the help you need -- or the drs who treated you in Houston may be able to refer you to someone? Are there any NCI designated breast cancer centers within a reasonable distance from you?

    Feel free to email me if you want to talk again. I hope that something(s) I said made you feel better, just as your Houston comments made me feel better.

    Regards,
    Linda

    I had the same done without reconstruction in 1991. Since I was 20 yrs. old I had tumors, calcifications, and atypical hyperplasia cells. I was told I never needed another mammogram and I even started hormones 6 years ago. In 1999, my new PCP during a physical felt a lump above the left incision and sent me for a mammo. After the mammo I was sent for an ultrasound by the breast surgeon. He felt it was probably scar tissue. But said I needed to have ultrasound or mammo every year. Absolutely, no facility wants to do mammo's on mastectomy patients here either and the attitude of my breast surgeon is "I have only seen one patient in 40 years get breast cancer after mastectomy". I have had severe pain in my left arm since October. All tests, scans are negative for bone and muscle problems. I am now going to a major cancer center in a couple of weeks for "a second set of eyes" to look at all my past reports and such. It may be nothing, but at least I will feel better and can proceed with the exploratory surgery they want to do on my arm. I have learned the hard way that you must ask questions until you get answers that make sense. I just wonder why after reading how people with the type breast problems I had then, are now being treated with tamoxifen and so forth because they are at high risk. I found out that I have about 15% breast tissue in each breast cavity and I never even knew that. I emailed the Johns Hopkins Breast Center and basically revealed all my problems with my arm and history. They were kind enough to hook me up with a cancer center here and they have been wonderful. I am waiting to receive ALL my medical records and films so that a "surgical oncologist" can review everything. You have to make the doctors know they aren't GOD and you deserve answers and treatment you ask for.

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