• Chances same for cancer anywhere same as second breast if gene mutation was breast cancer specific?

    Asked by Themom on Monday, April 23, 2018

    Chances same for cancer anywhere same as second breast if gene mutation was breast cancer specific?

    My daughter developed breast cancer and then testing showed the breast cancer specific gene had mutated, had a single because was given the choice at that hospital. My Granddaughter was a year old at the time she had the her surgery after chemo. She felt the single would give her more ability to care for Zoe and be easier mentally to keep the other breast for a year and it did turn out well.
    It came time for the 2nd mastectomy and her reconstruction and the doctors said it was ok to delay and that she had the same chance of developing cancer elsewhere. I was stunned! She has changed to the major cancer center where my other daughter was found to have the gene and they decided on a double with implants, doing well.
    In Jan, a yr after her first surgery, the new doctors have said they could make a decision in the Fall. The chemo still protecting her. I do not understand how the chances are same as other parts body as for her left breast if a breast cancer specific gene was the cause.

    22 Answers from the Community

    22 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hmmm. I hope carm will see this and respond. She is an oncology nurse and quite knowledgeable. Unfortunately, i have no idea.

      There is a website called GRACE. You might ask you question there if no one here knows.

      4 months ago
    • Ejourneys' Avatar
      Ejourneys

      Speaking as a layperson, I say: Get genetic counseling.

      A gene mutation is not as simple as it sounds. Different types of mutations can occur, each carrying different risks. "Breast cancer specific" could be misleading -- if you are talking about BRCA mutations, those are part of HBOC: Hereditary Breast and Ovarian Cancer syndrome. HBOC syndrome also means increased risk of pancreatic, prostate, and other cancers -- again, depending on the specific mutation(s) and the risks associated with it/them.

      More info here:
      https://www.cancer.net/cancer-types/hereditary-breast-and-ovarian-cancer

      4 months ago
    • Themom's Avatar
      Themom

      LivewithCancer I thank you so much. I will also make an appointment to talk with someone at the hospital and go talk with them. They have a Facility here in Fresno. Going through this together, they are very bonded and even though we are close, I sometimes feel very marginalized.

      4 months ago
    • Themom's Avatar
      Themom

      ejourneys Thanks for your kind response. Is this where I am supposed to answer. There is another place where I had discussion last year. Can you see my response to LivewithCancer and others who may post? I believe there is Genetic counseling here in Fresno (associated with UCSF) I had called about having my blood test there. I can always go up to SF for it. She will give permission I am sure. I will ask if I can be at her appointment when she discusses it with her doctors. My other daughter goes with her and is possessive. I will not push it.
      My blood tested negative and there is no breast cancer 4 generations back in my families.
      My late Husband’s parents were both orphaned, so we have no history. One Maternal Aunt passed of lung cancer. His other M Aunt had breast cancer at 92 and lived to 98. His Mother and Father both passed of lung and other cancers. They were all very heavy smokers. My husband passed in 2006 of colon cancer. No genetic testing was done.
      My daughter’s is PALB 2. She had her tubes and ovaries removed in July. She did not mention the change until a month before she had said she would have the second surgery, but that was also when she changed insurance and started at UCSF. At her appointment they said she could wait. My other daughter had had her surgery and then the expanders had to be replaced half way through and she was helping her. Then the wait before her implants in February.
      I knew from research and our discussions that having an occurrence in another organ could be in the future. But isn’t it logical that if the gene was for breast cancer only, her breast would be more susceptible than other organs and should be removed? If she chooses not to have the reconstruction, that’s their choice. I will read the link. Thank you.

      4 months ago
    • geekling's Avatar
      geekling

      Doctors can be infuriating. They conveniently forget that patients and their relatives rarely speak Latin, havent studied as they have, and simply need things properly and simply explained.

      Im not the person to do the explaining but I have a very strong feeling that a doctor spoke "over your head" and beyond lay understanding.

      I would like you to understand that if a doctor cant explain himself and clear up any misunderstanding, that doctor does not know his subject and can be described as living as though he were close to a horse's hindquarters. Kapish?

      Someone mis-spoke or mis-led you and, from what you say, isnt smart enough or caring enough to correct the error.

      I am glad your family has the good sense to find a different doctor. I am very disappoibted in that I always thought UCSF had great physicians.

      Wishing your family some positive and appealing results.

      4 months ago
    • Themom's Avatar
      Themom

      geekling I am very tired an emotional right now. I think UCSF will agree with me. You seem on my page.
      UCSF is the hospital she started with in Jan. I think the other was wrong and I think UCSF has delayed because of my other daughter’s surgery, expander resurgent and implants. She also had the flu after Christmas. I had a terrible time with flu before during and after ..I am 69. I was at an apartment in her downstairs and my other daughter and son in law cared for me. After 12 hours in UCSF ER with flu and small pneumonia I moved to their home , went back for a blood draw and they had mr brought back to Fresno to my RN sister and caring sister in law. After 7 days I finally retained food. I was weak for 3 months and brain fog. Just feeling better.
      I will try to go to apptmt with her about this. I agree that I am not getting all of the information. I was not there and it’s being filtered by my daughters.
      I must get some rest. Thank you so very much. As you can see, I think, LivewithCancer wanted carm input and I saw carm and I think you commented there also. More tomorrow.
      Thank you so much.

      4 months ago
    • Themom's Avatar
      Themom

      It’s PALB2 gene.

      4 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Awww, Themom, my heart really goes out to you. Your daughter is very lucky to have both a very caring and concerned mom and sister. It is good she has both of you! Please don't feel marginalized. If I understood your post right, both of your daughters have or are going through the same thing ... that would create a bond even if they hadn't been close before.

      You asked a hypothetical question about breast cancer metastasizing to another organ rather than to the other breast. My experience is in lung cancer, but I can tell you for sure that lung cancer can and does metastasize to other organs/locations instead of to the other lung, I find it completely plausible that breast cancer could do the same thing. (But, I am not a doctor nor have I researched breast cancer so I am only making a leap based on what I know about lung cancer.)

      If you can go to the doctor with your daughter some of your fears and concerns might be alleviated. As a daughter, I can tell you that I filter a lot of what my mom is told because I don't want her to worry. Maybe that makes her worry even more... (I'm not a worrier and she is a BIG worrier.)

      My mom, without all of the facts, partly due to my shielding her and partly due to her not understanding what was going on even when she went to doctor appointments with me, asked all of her friends about my treatment plans. Unfortunately, much of the information was invalid. Plus, I trusted my oncologist to know more about my case and circumstances than her bridge-playing friends, even if some were doctors. Of course, she was doing all of that because she cared so deeply and was so afraid to lose me. She wanted to help. And I appreciated that very much!

      By the way, you're writing on the "board" just right - we can all see your responses and everyone else's too. Last year, you might have had conversations on your wall???? Those can also be seen by everyone, but are not, in my opinion, as easy to participate in as these because you have to know to go elsewhere to see the conversation.

      Hoping you get the answers you seek!! Big hugs. I can't imagine how difficult it is to be the mom of one, let alone two, daughters going through this. (Have BOTH daughters actually had breast cancer?) I do have a friend in VA that has faced just that, though.

      4 months ago
    • geekling's Avatar
      geekling

      http://www.breastcancer.org/research-news/abnormal-palb2-gene-increases-risk

      This second link better explains the risk of overall cancers if one has an unusual palb2 gene. It also explains why even doctors can get confused. So many of these gene abnormalities are so similarly named.

      http://www.breastcancer.org/risk/factors/genetics

      I also grow very tired of reading about Ashkenazi Jews and their risks. There were, at a point in time, several groups who lived in a particular area around the Rhineland. Jews, Gypsies, Cajuns, and those who are now French Canadians were amongst those localized there and each of those groups share similar risks, not just Jews. The real question is what was going on in that area that so many people had their genes damaged? Some poison in the air or water or soil?

      Best wishes

      4 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Geekling, the reason that the BRCA 1 & 2 and PALB2 gene mutations are commoner among Ashkenazi Jews has utterly NOTHING to do with "poisons in the air or water."

      Until the 20th century, intermarriage (to non-Jews or even to Sephardi or Mizrahi Jews) was almost unheard of among Ashkenazim ("Fiddler on the Roof" notwithstanding). Because of that, going way back to medieval and Renaissance times in the Rhineland and later the Eastern European "Pale of Settlement," there was much more inbreeding in such an insular population. There was no such thing as "poison in the air or water or soil" back then--then as now, most often, the reason a mutation occurs is "s..t happens." But once a gene mutates, and its carrier bears children, it gets passed down through the generations, hence the far higher concentration of gene mutations in certain insular populations as Ashkenazim than in the general population. (Not just for cancer, but Tay-Sachs, Gaucher's Disease, Gilbert's Syndrome, etc.).

      Remember, until the mid-19th century advent of the Reform movement among Jews with secular secondary educations in major German cities, all Jews were Orthodox, especially Ashkenazim. Intermarriage was strictly forbidden--in many Ashkenazi societies, the penalty for it was excommunication (literally, expulsion from the community) and parents even followed liturgical mourning customs for a child who married a non-Jew.

      And there was no such science as human--much less medical--genetics until at least the late 19th century, and as such it was about diagramming hereditary traits, before the discovery of chromosomes, DNA and isolation & identification of individual genes. (And far back in history, women didn't usually live long enough to manifest breast cancer; those Ashkenazi women who did live long usually married early and bore and breastfed many children until menopause,
      --which limited the amount of estrogen exposure over their lifetimes).

      My sister and I both married outside the faith (I in the '70s, my sis in the '90s). We were the first generation in our family to do so. We are both 99.7% Ashekenazi--as are most Baby Boomer Ashkenazim who did not have a non-Jewish parent or grandparent. (We tested negative for the cancer gene mutations, BTW, but 85% of breast cancer patients have no family history, much less mutations). These mutations also appear in Quebecois & Cajuns but to a far lesser extent because those groups began intermarrying earlier in history than did we, because they did not have religious prohibitions against it. As to Gypsies (Rom), even though intermarriage is rare, the extent of genetic mutations is far less known because they are much less likely to interact with the mainstream--including the medical community. They are unlikely to turn to major medical centers, much less get genetic testing. This is because general society still stigmatizes and distrusts them--and therefore the feeling is often mutual.

      Because of increased intermarriage rates among non-Orthodox Ashkenazi Jews (50% as of now and rising), the concentration of these mutations is becoming diluted but also showing up incrementally more often now among non-Jews. Any mutations caused by environmental factors are highly individualized and most likely not tested for (nor researched).

      And as others have pointed out, the same genetic mutations that most commonly increase risk for various breast cancers also raise the risk for melanoma and ovarian, uterine, colon, and pancreatic cancers as well. That's probably what the OP's daughter's doctors meant by increased risk of cancers in "other parts of the body"-- primary tumors, not mets. (And breast cancer doesn't "spread to the other breast"--contralateral bc's are primary tumors).

      It's tempting to view everything--especially disease--through the lens of pollution and injury to the environment--even though damage to the Earth is very real and distressingly increasing. But look at the science and the anthropology first before jumping to conclusions.

      4 months ago
    • Themom's Avatar
      Themom

      To you All I’m in Fresno California PDT.
      Sorry I just can’t answer each of you and it is all open to all. Thanks for the links. And thoughts and questions. And well wishes. Please feel free to ask and I will answer.
      livewithcancer: yours would go to other parts of body instead of other lung, but I am not clear if it is “genetic, lung specific cancer”. Hers being “genetic, breast specific” is my major concern with her not having her other breast removed. The original choice she was given was to have a double or single, that indicates to me they wanted both removed. I do understand it may occur in other organs in th future, but why would her breast not be the most vulnerable to breast specific cancer?
      Yes, very, very strong bond between them and husbands also. They all have helped with Zoe and all with each other all the time since her diagnosis when Zoe was 6 months old, so almost 2 years. It is beautiful. Zoe is our blessing, our light in the darkness. We all can’t imagine going through this without her. My daughter has sent me a photo or video almost every morning since she was born. And we all share Flickr. It has been wonderful in making me feel less way out here. I could be there in 6 hours usually, if needed. I Amtrak as I don’t drive. It’s only 3 1/2 hr car trip.

      BOLD JUST TO INTERJECT THIS: Lynn just texted and said she is having her appendix out next week. “There is a little fluid buildup on it, totally normal but they want to take it out.”
      Now she just texted she had no symptoms, it was on quarterly CT scan. They don’t want to chance a burst. I assume because of immune system. Laproscopic. I’ll have to research it.

      They are 39 and 40, 18 mos apart. I agree things not fully explained so I don’t worry, but it does make it worse. I am slightly disabled by a Fall 5 years ago, so I have a lot of alone time. I don’t feel I’m a over worrier, an over thinker a better term. I need to understand things
      I will definitely try to be allowed to go to her next appointment..
      I’m not sure where I posted last year. I have seen it recently. Must be Wall if no other place. My name themom is the same.
      I have one friend who had a lumpectomy chemo and radiation. I called her initially to talk and ask questions, now we don’t talk much about it, just what is being done. My cousin in Central NY had the same and I messaged with her in the beginning. Now I just send updates to my family there. Another friend was a 20 year survivor before she passed last Fall. Not a lot of input, she did go to my mammogram scheduled shortly after diagnosis. So I am not getting a lot of riff-raff like your Mother did.
      In the link I read yesterday from Ejourneys there was PALB2 at the bottom of a list of genes, but then I could find no other information on that site about it. E did not know it what gene Lynn has. These links appear to be more focused as you did know.
      I did not pay attention to the ethnic discussion, I’m in the present right now and cause not my focus. “It is what it is”. My parents were both Irish and German, 4 generations here with no breast cancer that we know of. I tested negative. (Yes, I agree, some toxin in the area)
      My husband’s parents both orphans. His Father came in early teens with his brother to NYC from Italy (they parted ways and he died of gunshot) ..So his Father Italian, Mother most likely Italian. My husband’s Mother a McClernan so her Father Irish, Mother ? We do not know how long in US or if they met here. His Mother’s sister is only breast cancer, at 92. M, F and the 2 Aunts passed of lung cancer, all very heavy smokers. My husband passed of colon cancer in 2008, never ever smoked, but took in a lot second hand. No genetic test, but clearly gene was paternal.
      Zoe born 1/2/2016, stopped nursing in May for return to work. Felt lump 6/12. I went to SF the next day, as I was going the 14th for Zoe’s Baptism the 16th Fathers’ Day. She had first Kaiser appointment on Friday 14th, they felt it was probably a calcium deposit but scheduled her to come in following Wed for full testing. Her Dr called 1st thing Mon and said to come in immediately. She also went Tues and we knew. She had a 2nd opinion from UCSF. But they work closely with KP so she had treatment there. Dr from UCSF was to do reconstruction from her own baby belly. Had chemo, break in Dec, single surgery 1/11/2017, tubes out July, was to have 2nd mastectomy (no cancer) and reconstruction in Dec but changed insurance to go to UCSF. Also said she may not have 2nd, causing my dismay and confusion. Saw Dr at UCSF and they said to make that decision next time for Fall. She was helping sister Samantha who had tested + for gene which gave her a 50/50 chance of a mutation causing cancer. She had had a profilactic double. See above, I think I am repeating too much.
      Thanks again.

      4 months ago
    • geekling's Avatar
      geekling

      @ChicagoSandy, although this has nothing to do with me being wrong or right, the influx of Jews, Gypsies, and the Rhineland French to the Americas all happened around the same time. This would mean that intermarriages began then too. There were even a few somewhat famous Jewish Native American Indian Chiefs.

      Since the term "Ashkenazi" has, since the 1950s, been synomous with all European Jews instead of just Rhineland Jews, my point is that the term is no longer meaningful, assuming it ever was.

      Those lovely German SS men used the term to describe those Jews they could get their hands on (in Europe) v those who were out of their reach (Africans and those in what we now call the Middle East).

      As to whether I am incorrect or not, who knows? Poisons can and do change chemistry. The science of genetics is but an infant.

      Glysophate was originally invented for descaling. That means it was to clean commercial boiler pipes. It did so by attaching to minerals which had built up in the pipes and then being flushed away taking the minerals along with the flush action. Try a little youtube, if you will, which demonstrates a correlation between poison and mutation:

      https://m.youtube.com/watch?t=280s&v=yiU3Ndi6itk

      As to what was ruining the genes of people in one little area a few centuries ago, I dont know and, I would gather, no one in particular does either. Lack of intermarriage would have been an easy fit if there werent so many durned exceptions.

      People, methinks, are like roaches in that they are easy to maim but difficult to kill.

      4 months ago
    • Themom's Avatar
      Themom

      Geekling and Chicagosandy
      I hope you can find it in your hearts and minds to stop this war of words, when others coming here need words of help and hope.

      4 months ago
    • geekling's Avatar
      geekling

      Dear @Themom, @ChicagoSandy and I are not at war. We are discussing differences of opinion. At best it rises to a debate.

      I know you arent feeling so well but being able to have one opinion while a neighbor has a different opinion on the same subject is an essence of freedom. We can freely discuss our differences without fear of reprisal and, at the end of the day, walk arm in arm to share supper. Our opinions may have changed or may not have changed but we still honor and respect our differences as much as our commonalities.

      You are correct, however, in that this is your question (something like an internet version of your living room) and I do not and I am quite sure ChicagoSandy does not wish to upset you and I apologize if I have.

      Best wishes

      4 months ago
    • Themom's Avatar
      Themom

      Thank you geekling.

      4 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Ashkenazi Jews originally came from the Rhineland area, but as the area became more and more hostile to Jews--especially after the Crusades--and borders of various nations & empires were fluid, much of the eastern portion of Central Europe fell under the rule of first the HRE, then Austria-Hungary and Russia. The latter delineated an area of Eastern and east Central Europe where Jews were permitted to live, called the Pale of Settlement. It stretched from eastern Germany to Poland and into western Russia, Lithuania, Latvia, Belarus, Ukraine and southward through Austria, Hungary, Romania, and the eastern parts of what are now the Czech Republic & Slovakia. The first wave of Ashkenazi immigration to the Americas came in the 1840s, when northern Germany became hostile towards not just Jews but Catholics. The latter tended to migrate further east, but the Ashkenazim who could afford passage came to the U.S. (America's prominent Jews of the Revolutionary through Civil War eras were Sephardim, as were the "Jewish Indian Chiefs" you mention). The German Ashkenazim brought Reform Judaism with them--though most Jews were still Orthodox. The second wave of Ashkenazi immigration to the U.S. began in the 1880s, from the Pale of Settlement, as anti-Semitism and pogroms exploded over those areas--especially Russia & environs. These Jews were nearly all Orthodox, and it was their American-born children who began to embrace Reform (and later, the 20th-century Conservative) Judaism. A smaller portion also brought the charismatic Hasidic movements from Poland & Lithuania. This second mass immigrant wave also included other Europeans--especially from Italy & Greece and the Roma people ("Gypsy" is now an ethnic slur)--but the difference was that among Ashkenazim, there were still strict religious prohibitions against intermarriage until the 20th century, observed throughout the first half.

      Ethnically French non-Jewish Rhinelanders were not by and large a significant part of either wave of immigration. Quebecois and Acadian French originally came to Canada centuries earlier.

      We do not know the prevalence of genetic mutations among the Roma because they did not interact with mainstream American society, especially not when it came to their basic societal infrastructure and medicine. If there is indeed a cancer-gene mutation among Roma, it is almost certainly not the BRCA (or to a lesser degree Chek2 or PALB) ones found among Ashkenazim and the Gentiles with whom they intermarried during the 20th century. BTW, some cancer researchers in NM have found a mutation among Sephardim, but it too is not one of "the big 3" found among Ashkenazim and their New World descendants.

      Back in the 19th century and earlier in pre-Industrial Revolution Europe, environmental toxins did not exist other than those produced by poor sanitation (bacterial/viral/parasitic), wood and peat smoke. Other fossil fuels, pesticides, herbicides, etc. had not yet been developed. That is not to say that there are no environmental carcinogens & mutagens today--but they do not cause the "big 3."

      4 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Let me clarify: by "big 3" I meant the best-known breast-cancer gene mutations (the BRCA 1 & 2 and PALB)--and that they predate (by centuries) the environmental factors that are known or suspected today to be carcinogenic, mutagenic or teratogenic. I also detected a subtext of resentment of ethnocentricity on the part of modern onco-geneticists (and I quote: "I also grow very tired of reading about Ashkenazi Jews and their risks..."). There is a darn good reason for distinguishing Ashkenazi increased bc risk from those other ethnic groups cited, and I needed to explain it. This is by no means a "war of words," but rather an explanation of science & anthropology.

      I have done extensive reading about the history of Ashkenazi Judaism, both for my own enjoyment and as a requirement for the year of study leading to my adult Bat Mitzvah. For anyone curious about the history of Ashkenazi Jews, I also recommend two excellent books by historian Stephen Birmingham: "Our Crowd," about the German Jews who immigrated here in the mid-19th century, and "The Rest of Us," about the much larger Eastern European cohort who arrived towards the end of the century. He also wrote "The Grandees," a history of Sephardic Jews in America.

      BTW, I am married to an MD who also holds a PhD in medical & mammalian genetics. I also had to have genetic counseling (before testing) when I was diagnosed with bc, and the excellent genetic counselors at Evanston Hospital explained the Ashkenazi connection and necessity for any Ashkenazi Jew (of either gender) with a bc diagnosis to get tested--regardless of a family history. I am not aware if such is the case with patients of the other ethnic groups cited--are there any genetic counselors lurking on these forums who can enlighten us?

      4 months ago
    • Themom's Avatar
      Themom

      I will find another place to get answers I may need in the future.

      4 months ago
    • DoreenLouise's Avatar
      DoreenLouise

      Themom, please continue to use this site as there is a vast amount of information shared. Not all of it will be good for each of us, but a lot will. Disregard what is not helpful and use what is.

      4 months ago
    • Themom's Avatar
      Themom

      DoreenLouise
      It is much too important and timely to me to X the whole site. I will find people on What Next that will speak of the present and and the future..what is next.
      I have spoken with Lynn about joining her for the doctors appointment about the 2nd mastectomy.
      Our family has a saying, “It is what it is.”. It has grounded us through several major life events.
      Those were just about the first words Lynn spoke when we knew, well before the doctor actually saying it.
      We can’t change it, so we deal with it..NOW! One step at a time.
      Right now, that is her appendectomy on Tuesday. Pray-ers, please pray. Positive energy and any thing you feel helps is welcomed.

      I have no need for distracting discussions of the distant past; it’s irrelevant to her treatment NOW.
      Some may want to consider raising their issue as another Question. Maybe as “What was: a discussion of Why?”

      Thanks, Doreen and all you.

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      TheMom,
      Today is Tuesday and I've said a prayer for your daughter. Wishing your family comfort.

      4 months ago
    • Themom's Avatar
      Themom

      Thank you so much. Prayers are the Best.
      Surgery was at 7:30 and Lynnie was home by one. Craving her own bed and some food.
      No report from dr yet on appendix, but she did great.
      My Granddaughter with Auntie Sam and Mike. Great that it’s so natural to her.

      4 months ago

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