partner's recurrence

Rett
Rett Member Posts: 14
edited March 2014 in Breast Cancer #1
I am not really sure what I am looking for here, I guess the chance to talk with people who maybe know more about this than I do. My girlfriend was initially diagnosed with DCIS in August 2000 (before I really knew her). Two weeks ago we went in for her 'routine mammogram' check-up and were told that something is there once more. My problem is I am living in Germany, and am still learning the language, so I am having a difficult time gaining info here. I basically go to all the appointments with her, read her old notes and then try to make sense of things (i.e. try and figure out what the english words for things are so I can read up on the net about them). She has a vacuum biopsy scheduled for Tuesday morning and we are expecting that it will confirm that it is malignant. She is 34 years old, her mother died from breast cancer 15years ago. At this point I think there is a good chance that she will opt for a double mastectomy. The loss of the breasts are not causing a great deal of concern so much as the concern of what the reoccurence means for her in the long run i.e. she has read that having breast cancer means that she has a great potential for other cancers. And I am curious too about how effective the double mastectomy is i.e. can we really relax if she has it. I would really appreciate chatting with some patient person/people who can help me throught his a bit...

Thanks,
Rett

Comments

  • zgill
    zgill Member Posts: 3
    #2
    As far as I know depending on size of tumor and if it is confined to breast(not chest wall muscles) The survival rates for a lumectomy and
    possible lymph node removal are no different then full masectomies. only difference is with lumpectomy adjuctive therapy includes radiation. Also a masectomy is no quareentee the breast cancer will not recurr since there is usually some breast tissue left. The most accurate guage of recurance is the pathology of the tumor which you won't know until lumpectomy or masectomy.I wish you the best and keep looking for info there is so much out there try cancercare.com site
  • Sandis
    Sandis Member Posts: 85
    #3
    I also had a strong family history. I elected to have genetic testing which indicated that I have the BRCA2 Gene. With that gene, the chance of recurrence in same and other breast is greatly increased. Therefore, the bilateral mastectomy decreases the risk of recurence. this is different if there isn't a genetic factor involved. I had bilateral mastectomy with chemotherapy and my chance of recurrence is GREATLY reduced. Until the biopsy and mastectomy, you really don't know what you're dealing with, but with her age and family history being aggressive sounds reasonable. I had reconstruction also and my husband loves my new perky breasts. Sounds like she's really fortunate to have you to stand by her and help her during a difficult time. Everyone's situation is different and it really helped me to read a lot and to be confident when I made the decisions. Good luck
  • Rett
    Rett Member Posts: 14
    #4
    zgill said:

    As far as I know depending on size of tumor and if it is confined to breast(not chest wall muscles) The survival rates for a lumectomy and
    possible lymph node removal are no different then full masectomies. only difference is with lumpectomy adjuctive therapy includes radiation. Also a masectomy is no quareentee the breast cancer will not recurr since there is usually some breast tissue left. The most accurate guage of recurance is the pathology of the tumor which you won't know until lumpectomy or masectomy.I wish you the best and keep looking for info there is so much out there try cancercare.com site

    thanks for your reply. I will check out the website you mentioned. the biopsy is tomorrow, and we will meet with the doctors on Thursday or Friday to find out the results. In the mean time I am trying to find out a little bit more about how things work. Especially the role "mikrokalk" plays in all this - mikrokalk literally translated is microlime, but I have not yet found any mention of lime build-up in relation to DCIS. From what she told me it is the mikrokalk we see in the mamommogram - could you possibly give me an idea what the english term for it is?
  • Rett
    Rett Member Posts: 14
    #5
    Rett said:

    thanks for your reply. I will check out the website you mentioned. the biopsy is tomorrow, and we will meet with the doctors on Thursday or Friday to find out the results. In the mean time I am trying to find out a little bit more about how things work. Especially the role "mikrokalk" plays in all this - mikrokalk literally translated is microlime, but I have not yet found any mention of lime build-up in relation to DCIS. From what she told me it is the mikrokalk we see in the mamommogram - could you possibly give me an idea what the english term for it is?

    My apologies - I managed to answer my own question by looking at the site you mentioned - I should have realized that they were using a short form - the mikrokalk is of course the microcalcifications.... !
  • Rett
    Rett Member Posts: 14
    #6
    Sandis said:

    I also had a strong family history. I elected to have genetic testing which indicated that I have the BRCA2 Gene. With that gene, the chance of recurrence in same and other breast is greatly increased. Therefore, the bilateral mastectomy decreases the risk of recurence. this is different if there isn't a genetic factor involved. I had bilateral mastectomy with chemotherapy and my chance of recurrence is GREATLY reduced. Until the biopsy and mastectomy, you really don't know what you're dealing with, but with her age and family history being aggressive sounds reasonable. I had reconstruction also and my husband loves my new perky breasts. Sounds like she's really fortunate to have you to stand by her and help her during a difficult time. Everyone's situation is different and it really helped me to read a lot and to be confident when I made the decisions. Good luck

    Thanks for the reply Sandis. Just having other people to talk to in english makes all the difference to me! I have heard that there is also a group in the states (?) that is for younger people with breast cancer - I imagine that includes the 34 year olds - if anyone has info on how I might contact them I would also greatly appreciate it.
  • slamaj
    slamaj Member Posts: 19
    #7
    Rett said:

    Thanks for the reply Sandis. Just having other people to talk to in english makes all the difference to me! I have heard that there is also a group in the states (?) that is for younger people with breast cancer - I imagine that includes the 34 year olds - if anyone has info on how I might contact them I would also greatly appreciate it.

    Rett, There is the Young Survival Coalition at www.youngsurvival.org for women under 40 with breast cancer. Hopefully this will be a good resource for you. Best of luck, Julene
  • Unknown
    Unknown
    #8
    Can you have them interpret for you directly at apptmts.? that is becoming the "American" thing here with our limited English speakers. Can you call ahead to request interpreters for apptmts. Or simply ask you partner to interpret as you go? Keep coming back here with specific questionsm there will be someone with helpful experience. Good Luck!
  • Rett
    Rett Member Posts: 14
    #9
    unknown said:

    Can you have them interpret for you directly at apptmts.? that is becoming the "American" thing here with our limited English speakers. Can you call ahead to request interpreters for apptmts. Or simply ask you partner to interpret as you go? Keep coming back here with specific questionsm there will be someone with helpful experience. Good Luck!

    I will have to check into that. We had the 'results' meeting this morning and I managed to get a copy of the report so I can take my time going through it. My partner can't really translate as her english is probably worse than my german ... she's quite patient with my questions and does her best to clarify things when I am not sure. I am trying to get in touch with a support group here, with the hope that I can find someone there who can explain things in english or at least give me the keywords in english so that I can research it all elsewhere. We meet with the surgeon this afternoon to come up with a game plan... in the mean time G has gone to school for the morning. I will pick her up in a couple of hours and we will take anoter step forward. The goal for the day seems to be to breath...

    The good news (if I understood this right)is that the biopsie showed "keine invasiven Anteile" - which I am taking to mean that there was no sign of it being invasive... the diagnosis seems to be high grade-DCIS with "Nekrosen" (I have no idea what that last word means... sigh)...

    thanks again to all of your for the support... I appreciate it to no end... and am already looking at the young survivor's site - Thank you!

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