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Family History. Doctors not taking me seriously

dani657
dani657 Member Posts: 4
edited February 2023 in High Risk for Breast Cancer

Hi I'm Dani and I'm new here. I've never posted on a forum before so I guess this really feels like a last resort for me. I've had obsessive thoughts about getting breast cancer ever since I learnt of my alarming family history 5 years ago. I am currently 25 and after being in and out of therapy over this I don't want it to be tossed aside as just "anxiety" anymore.

My mother got breast cancer when she was 40 ( I was only a teenager at the same ) Her mother had breast cancer in her 60s as did her aunt and cousin (50s) and her sister ( my aunt ) had precancerous cells removed. Everyday I feel like a ticking time bomb. I feel unsafe and unnerved by my own body and I've decided I want a preventative mastectomy. I don't want these thoughts and fears to consume me anymore.

I've had my mind set on it for a few years now which brings me to my problem. I live in Ireland and my GP won't even refer me to a family history clinic until I'm 30. My mother had genetic testing but was BRCA negative. I fear that doctors will continue to undermine my risk due to not having BRCA but at this point I need this surgery so I can live the rest of my life without this consuming me anymore. I'm distressed at the thought of going to different doctors and nothing being done cause I genuinely can't cope with this fear looming over me and depriving me of more years of my life especially when I'm so young.

How do I convince any doctors that I need this surgery more than anything and I'm in the right mentality to go ahead with it?

Comments

  • kaynotrealname
    kaynotrealname Member Posts: 346

    The UK is different than the US. Since you have socialized care convincing them to amputate what seems like healthy breasts might not be possible without something specific saying you are more likely to get cancer than not. The only thing I can suggest personally is you might want to go through more extensive genetic testing. There are way more genes beyond BRCA that can cause breast cancer. Privately that might be affordable. I would seek out a genetic counselor and go from there.

    I understand how consuming anxiety can be. Have you tried medication? That truly did restore me back to a capacity to be able to feel joy and happiness despite grief and worry.

  • hi Dani! I have a couple of thoughts. First of lm sorry for all of your worry. You do have a strong family history of breast cancer. You are a little bit older than my daughter who was also in her teens when I was diagnosed. I’m in the United States so our health care systems are different. I’m not sure how to help you advocate for yourself there. But I do want to point out that there are other breast cancer genes besides the BRCA 1 and 2. My family for example carry the chek2 gene. Perhaps your could talk to your dr about getting genetic testing that includes more than just the BRCA genes unless perhaps your test did include them. I don’t know how your health care issursnce works and if a preventive mastectomy would be covered without having a cancer gene

    The other thing that struck me about your post is that you suffer from “obsessive thoughts “. My daughter does too though not about cancer. When she’s driving she “sees” the other cars crashing into her. Her psychiatrist explained this is a form of obsessive compulsive disorder and there is treatment for that. She does talk therapy but she also takes a daily pill. This has eliminated these obsessive thoughts. I encourage you to speak to a mental health professional. You shouldn’t suffer like this.

    No one can know or predict if you will get cancer. Even if you carry a gene for cancer still there is ONLY an increased risk. Being aware of your breasts and any changes in them is critical. As is getting screenings like mammograms when appropriate as determined by your health care provider. Getting a mastectomy would greatly reduce your risk of cancer but it wouldn’t reduce it completely.

    I hope this helps. Take car

  • dani657
    dani657 Member Posts: 4

    Thanks for the reply

    I explained to my GP that there are other genes but it just falls on deaf ears. In Ireland they only test for BRCA1/2 so I feel like I'm being dismissed on every concern due to that and also my age. I've been on a few medications for anxiety but nothing seems to help since this is a medical concern that's deeply rooted in facts. Medication can alter my feelings and physical sensations but it can't get rid of knowledge I know about something especially when Its something that puts my life in danger. I just don't know what to do about it anymore.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,650

    I will concur with the other comments, bearing in mind that I am also from the US. Genetic testing has moved far beyond BRCA 1&2. I believe that there are 30+ possible mutations that one can now be tested for so that is something you can proactively look in to. However, even testing positive for one of these mutations only suggests a greater risk. There is, quite simply, no foolproof prediction tool for bc.

    I not only have a strong family history of BC but belong to an ethn/religious minority with a greater than average incidence of BRCA1. All of my genetic testing has been negative. My daughter’s paternal side also has several cases of bc however all of her testing has been negative as well. She also shares your fears so we have been working on perspective as well as increased imaging. She is not yet 40, which is when routine mammograms often start in the US. Based on family history, she will now alternate mammos and MRI’s and this monitoring is helping her not catastrophize something which is not a catastrophe now (and hopefully never will be). Therapy/counseling is definitely a good thing if the worry is interfering with your life. Take care

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,650

    Dani,

    We were posting at the same time. Is private pay for additional genetic testing possible? Additionally, please bear in mind that despite your family history, the chances of developing bc at your age are very small. For the known genetic mutations, only about 15-20% of those tested are positive so with our current knowledge, most cases of bc are not genetically related. What would you like to see done that might put your mind at ease?

  • maggie15
    maggie15 Member Posts: 771

    Hi Dani, I have lived in Ireland and it is correct that you will not be referred to a a family history clinic until you are 30. You have the option of paying for private genetic testing but, as exbrnxgrl said, that does not necessarily predict risk. Not all breast cancer that runs in families is caused by genes that show up on the tests available today. If you do develop symptoms like an unexplained lump before you are 30 you will be referred to a breast clinic for investigation, so there is no need to worry that you will not be treated if you do develop cancer. Since you have a family history do what you can to prevent cancer: eat a healthy diet, don't smoke, exercise at least 30 minutes a day and avoid alcohol, things which are proven to minimize risk. Best wishes for good health in the future.

  • dani657
    dani657 Member Posts: 4

    Hi Monarch thanks for responding

    I'm sorry to hear about your diagnosis and the chek2 gene in your family and I wish the best for you and your family. In Ireland we only test for BRCA1/2 we're very behind in genetic testing. Currently my GP won't even refer me to a family history clinic for a risk assessment or genetic counselling. When i brought it up she told me I need to focus on my anxiety problems but the uncertainty surrounding my risk and feeling unsafe in my own body is what's causing the anxiety and no ones doing anything about it. The obsessive thoughts have followed me around on night outs, first dates, holidays it's tainting any memories I could make and it's extremely frustrating when I know the solution but no options are being given to me. I'm sorry that your daughter struggles with obsessive thoughts too. It's extremely difficult to live with that's why I'm so sure that I want this surgery. Physical health aside I want the surgery mostly to beat my anxiety and live the rest of my life with a peace of mind. I also don't want to undergo any genetic testing because if I found out I had a different gene then I'd be likely to obsessively research into it and my risks for other cancers. I'd rather put that part of my life behind me. I just want my life back and I feel like surgery is the only way I can get breast cancer out of my head for good and reclaim my body again.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,650

    Dani,

    A mastectomy, with no known risk factors save for family history (which may or may not mean anything) is something that many doctors/medical systems either don't do or are very reluctant to do, even in the US. Doctors simply don't remove healthy body parts because something might happen some day without compelling evidence that shows a strong likelihood of that being a real possibility. Although mastectomies are easier than they once were (radical mastectomies are very rare in the US), it is still major surgery and comes with all of the risks associated with major surgery. I urge you to pursue the mental health route as it is clear that you are experiencing great anxiety without clear evidence to pursue such a major and irreversible surgery. None of us can see into the future nor do we have any guarantees but you are looking at an extreme “solution “ to a problem that might never occur. Lastly, I don't mean to diminish your feelings in anyway as I know they are very real to you but please understand why doctors would not be keen to remove healthy body parts.Take care

  • kaynotrealname
    kaynotrealname Member Posts: 346

    I'm going to speak on this because I get it, Dani. My mother died 9 years ago from ovarian cancer and then I had my first mammogram one month afterwards. And was called back. I don't think I've ever been so frightened in my life and it lasted for about a month and a half before they finally cleared me. Through research I found the connection between ovarian and breast cancer and was so frightened that I refused to be tested for 6 years. I managed my anxiety somewhat with medication and a little therapy but the feeling was always with me that I was at risk. When I finally got tested I was negative. Then I ended up diagnosed with breast cancer a year or so later anyway. My point is this. Yes you are at elevated risk due to your family history risk and there is nothing to do to alter those facts. It is what it is. However, nobody is going to give you a mastectomy unless you test positive for a gene. It's okay that you don't want to test. I didn't either. But you aren't going to have any chance of changing anyone's mind without one and that is also an unalterable fact. I doubt you would change anyone's mind anyway to be honest. I'm on a breast cancer site for the UK and I don't know of anyone who has ever been approved for a preventative mastectomy without a positive BRCA test. We don't even recommend for that here although you can get doctors to do it if your insurance approves the operation. And your mother tested negative for it so unless you have reason to suspect your father would test positive, you don't have BRCA.

    So you're going to have to figure out a way to manage your fears without surgery. So here's some other facts. Breast cancer at your age, even with a gene, is very uncommon. In the US we always say to start screening 10 years before diagnosis of your nearest relative with breast cancer so for you that would be 30. It sounds like your GP will be referring you then so that will be right on schedule. Secondly, let's say the worse case scenario occurs and you get breast cancer. Well another fact is that it sucks and is difficult but is still one of the most successfully treated cancers. It has high cure rates. Granted you can't know if you are cured just because of the nature of the disease but most of us get one. And even those that don't, they are living longer and longer with the disease to the point that many doctors now are terming it as a managed disease. Like diabetes. I would tell you to get on an anti-depressant and find a therapist that specializes in treating people with anxiety. There are specific ways of thinking that can be taught to you that can help you manage your thought processes. I wanted to go through a preventative double mastectomy after my first stressful mammogram, too, but couldn't get approved because of a lack of a positive gene test. After I was diagnosed with breast cancer I thought back and asked myself do I regret the decision? Do I wish I had gone private and paid for it myself? And the answer is no. Surgery was tough and is still tough. I am happy with my breasts being gone and I like my reconstruction but the new girls aren't the same nor as good. Sexual feeling was nice and that's gone forever. Plus there just wasn't a good reason for the surgery. It didn't make sense to let my anxiety make such a big decision for me and without that positive gene test that's exactly what I would have been doing. Not a good way to live life. So focus on getting help to make yourself mentally healthy and turn all your energy there. It will do you the most good long term right now.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,650

    kaynotrealname,

    That was a wonderful post. Thank you for expressing so many things involved in this type of situation so well.

  • Dani, you’ve gotten a lot of good advice and a lot to think about. I feel for you because there’s a lot of people I love who suffer from anxiety. And you are close to my oldest daughter’s age.

    All 4 of my siblings carry the chek2 gene. I discovered it first when I was concerned about my risk for ovarian cancer around the time I was 40. Two close relatives have had ovarian cancer. I was stunned to learn chek2 is mostly associated with breast and colon. My older sister also tested positive. She had endometriosis and proceeded with a hysterectomy something she long put off. About a year and a half later she was diagnosed with late stage ovarian cancer. AFTER a complete hysterectomy. How did that happen? A few cells must have been left behind. Rare? Yes! But it happens. 6 months later after a routine breast MRI I was diagnosed with breast cancer. 6 month prior to that nothing was seen on a mammogram or ultrasound. My cancer and my sister’s cancer prompted my other two siblings to get tested. My brother and other sister also carry the gene. After working with a genetic counselor and cancer drs my sister proceeded with a hysterectomy due to some ongoing issues with her periods, family history of cancer and carrying the gene. No one recommended she get a mastectomy because her breasts are healthy and there are so many good ways to image breasts. As you know there are no good screenings for ovarian cancer. She does get mris and mammograms. She lives her life without excessive worry or anxiety about her breast health even though her two sisters have cancer.

    I know you think a mastectomy would cure you of your anxiety but anxiety is tricky and likely you would have a reprieve for awhile and then it would return but maybe focused on another health issue/problem.

    Obsessive thoughts are hard to manage. For my daughter common antidepressants don’t work for her. We had to find a psychiatrist for her to work with. She’s on a drug that is specifically for obsessive thoughts. Like I said I have a lot of loved ones with anxiety and depression who take medicine for mental health issues. What my daughter takes is something I never heard of before. But it works! She had to switch care providers and she’s tried about 5 different drugs It’s been hard but she didn’t give up and now she is experiencing relief from those thoughts.

    Please take sometime to really think about everything everyone has said. These are some really wise women here whohave commented. I sincerely wish you the best and hope you find a way to live with less worry and anxiety. I do understand how hard it is.

  • dani657
    dani657 Member Posts: 4

    I've received a lot of advice here and I truly appreciate it especially when it's coming from people who have already battled cancer and are ten times braver than I could ever picture myself being.

    I feel like my fears about breast cancer stem from other mental health issues. I always felt insecure about having small breasts which made me feel so calm about getting such an extensive procedure done since my body has given me nothing but negative thoughts anyway. I always compare my life to everyone else's which makes it harder to come to terms with having a family history since it's something a lot of people at least in my life can't relate to but it has helped being able to reach out to people who have similiar situations. It felt very isolating to come to terms with in real life since no one else understood it.

    I don't know how or if I'll be able to control my thoughts surrounding it. I've been on medication, tried 2 therapists for 3 years. It's hard not to let something like this define me at this point.

    My mothers genetics team said the women in my family don't need testing or surgery and we should start mammographic screening at 40 instead of 50 " to be on the safe side". They also said my risk is no greater than anyone else's since the test was negative but after all the extensive research I've done and even with what you's all said that's not entirely true. I was also told my grandmothers cancer wasn't linked to my mothers at all since it was a different type of bc??? and my mothers test was ordered solely because her aunt ( mid 60s ) had bc. My aunt currently 60 hasn't had breast cancer only an operation to remove what I think could be ADH and my mother thankfully hasn't had any complications since.

    Everyone including doctors and therapists have tried to reassure me but the fear has also manifested my insecurities about my body image too. I was able to keep the thoughts at bay for 3 months when I first started dating someone. That was the longest I've went without thinking about it for the last few years but then I started obsessively going through my family history in my head again which resorted to heavy drinking to try distract myself on days out just cause I was desperate not to let those thoughts ruin fun days for me.

    I'm considering going back to therapy and trying medications again despite being discharged from the clinic only 2 months ago. I'm really trying my best to manage it. My therapist tried cognitive behavioural therapy with me to no avail and then focused more on lifestyle changes but things havn't improved. It's also not very easy to distract myself since I don't really have many people to talk to anymore and I'm going through a rough breakup at the moment on top of all this.

    I know it's probably frustrating hearing someone like me go on about something that hasn't and possibly may never happen to me when some of you have actually lived through it and I'm really sorry if all this comes off as disrespectful as a result. I really appreciate all the advice I'm still just trying to come to terms with everything.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,650

    dani,

    I hear your frustration as you have tried to deal with your anxiety. I am also glad to hear that you will give meds and/or therapy another try. It often takes some trial and error to get it right but your persistence should pay off. I might also gently suggest that you not spend too much time here as the bulk of our forums deal with a whole host of bc issues and problems as those without issues tend to post far less. What I’m trying to say is not that we won’t lend you support but rather, I don’t want this place to be triggering in any way for you. Take care

  • kaynotrealname
    kaynotrealname Member Posts: 346

    I will comment again, Dani, because so much of what you've described I've dealt with. And sometimes still struggle with because an anxiety disorder is an on-going issue unfortunately. First of please don't feel you have to apologize to us breast cancer patients just because you fear what we have. I know you pretty much operate in your head like you have breast cancer already which is why you are in a high state of panic. I did, too, with about six cancers for four years. It's a joke in the family now but for awhile there I would wake up and alternate. Was it colon today? Breast maybe tomorrow, and always of course let's add ovarian in for good measure! And just to spice things up, how about some melanoma on top of it! I was a freaking mess. And I knew it. I knew my thoughts weren't rational or at least weren't rational in the sense that I had a serious illness at the moment, yet I still operated like I did. But once I got the proper medication (for me it was fluoxetene) and really devoted myself to good proper therapy, my anxiety started becoming manageable again. I still feared all those cancers but I stopped living my life as if it was imminent I'd get it. Don't get me wrong. I knew my risk factors but I could control my fears enough so that everyday life was mine to live with joy again. Anyway, I ended up working on myself enough so that when I was personally diagnosed with breast cancer, my worst fear realized, I actually have handled it for the most part okay. It was awful, I even had to get chemo, but the experience wasn't like I had feared. In fact, take it from somebody older, but most things you fear aren't. Life throws bad things at you. You are going to die one day. People you love will die. All that is true for everyone. You are no better nor any worse than anyone else. Each human has crap to deal with and we're all in this together. So in saying that, you've dealt with a lot of shit and it's traumatized you. That's normal. But nothing will solve that except to change how you handle fear. Exbrn is right that this site itself might be triggering. I would advise you not to research obsessively. I did. I could probably be an amateur oncologist if there was such a thing. But it did me no good except to feed my fears which led to circular thinking. And anyway, nothing you read on-line is going to convince you that you won't get cancer and that's what you're looking for. What you have to learn to live with is that you might get cancer and not to let it stop you from enjoying life. The only thing that I can think of that will help with that is the right kind of therapy (and sometimes it takes time and you might get worse before getting better) and perhaps the right medication if needed. Good luck. But take it from somebody who's been there. It can get tons and tons better.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Thank you, Exbrn. Anxiety is a damn beast.