Identical twin / 'moderate' risk - wanting screening MRI

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bmh
bmh Member Posts: 4
edited January 2016 in High Risk for Breast Cancer

Hello. I'm new on here and may not use all the terms correctly! Would love some input / advice from fellow identical twins or anyone with a risk factor and dense breasts.

My identical twin sister was diagnosed with Stage 4 aggressive BC (started off as inflammatory) in October 09, amazingly has been in remission for nearly 6 years on herceptin, despite having spread extensively to her liver on diagnosis.

She was tested back in 2010 and not a BRCA carrier. I have had annual mammograms since then, no problems apparently although plenty of scares on my part and a couple of biopsies, very dense breasts, got given three MRIs for screening purposes in 2009 /10 /11 due to a very understanding radiologist who was well aware of my sister's stage 4 diagnosis and the potential risk for me.

Family screening programme in the UK entitles me to screening by mammograms. These have all been 'normal'. I have recently been refused an MRI under the NHS as I am only 'moderate risk' according to genetic guidelines. I appreciate that I am not as high risk as BRCA gene carriers and I am grateful for my on-going health. However, according to CancerResearch UK, identical twin sisters have a 1 in 3 chance of developing cancer so I technically think of myself as more than 'moderate risk'. I fear that cancer may go undetected as my twin sister's was (did not show up on ultrasound - was pregnant at the time so no further imaging done until later).

I also know that dense breasts make mammograms unreliable. I have been assured today by one consultant that mammograms will be enough, by another that they won't be reliable but what can I do? I am without symptoms apart from benign breast changes / pain on one side - not concerned about this.

I have accepted that I will have to pay for my own MRI if I see a private consultant and can persuade him / her to refer me. This will cost about £2000 but I feel that peace of mind may be worth it.

Should I trust my annual mammogram and hope I notice changes? Should I spend the money? I am 43 and have a 2 year old daughter. Advice gratefully received.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi bmh:

    Have you met with a Genetics Counselor to conduct a formal familial and personalized risk assessment for you to ensure that the assessment of your risk as "moderate" is accurate in light of all relevant factors? If in their professional opinion you were at higher risk, perhaps they could help you obtain coverage of enhanced screening by MRI.

    A number of genes have been shown to increase risk for breast cancer besides BRCA1 and BRCA2. Since 2009, "multi-gene panel testing" for such additional genes has become more common. A Genetic Counselor can also discuss with you the pros and cons of wider multi-gene panel genetic testing. Some embrace such testing and the knowledge it can provide, and others decide against it for various reasons. Among the cons of panel testing: some multigene panels may include genes which lack of consensus practice guidelines for dealing with pathogenic (harmful) mutations; there may be no effective screening and/or risk management options for some cancer types associated with certain genes; less studied genes tend to have a larger number of variants of unknown significance; and there may be some genes for which there is very limited information about the level of risk associated with a pathogenic mutation (e.g., estimated risk is based on a single or few variants).

    BarredOwl


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  • bmh
    bmh Member Posts: 4
    edited January 2016

    Hi BarredOwl

    That is extremely helpful and thank you for your post. I was formally assessed by a genetics counsellor, either in early 2010 or 2011 ( I can't remember actually - that was when my sister was given her BRCA negative result too), and had considered my assessment in terms of family history as 'fixed'. What you say about mutli-gene panel testing is very interesting though, and in fact, your post makes me think that I ought to contact Genetics anyway, and see if they will review my case or at least talk to me again about my risk factor and how to manage it (the stumbling block as far as I see it is that the identical twin factor never gets fed into the assesment 'machine', but we'll see!)

    I really appreciate you taking the time to reply - thank you.

    bmh

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi bmh:

    Not only can family history evolve over time (e.g., if an additional family member was diagnosed with breast cancer or another type of cancer), but the research on models of breast cancer risk assessment is ongoing and their may be new and/or better models in use today. See for example, this recent report:

    Summary: https://connection.asco.org/magazine/exclusive-cov...

    Original Research Abstract: http://jco.ascopubs.org/content/33/28/3137.abstrac...

    I think it would be well worth your time to seek an updated assessment and consultation.

    BarredOwl

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  • Racy
    Racy Member Posts: 2,651
    edited January 2016

    At your age, an ultrasound should be standard, in addition to mammogram. My bc was detected on ultrasound.

    I have never had an Mri. My surgeon assessed that it was not necessary. I am a 5 years survivor.

    Start with an ultrasound and go from there. And/or get another opinion.

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  • Djabi53
    Djabi53 Member Posts: 184
    edited January 2016

    I don't have problems with density, but I do have risk factors and I've had genetic testing. Wanted to share my experience with genetic testing in case it helps with your situation. I'm 62. I had genetic testing done - BRCA 1&2 plus 3 panels. The panels I had done were the ones for which there are no guidelines at this time. Family history is mother diagnosed with bc mid 70's and doing fine. Maternal aunt died of bc in early 70's/refused mastectomy. Cousin died of bc premenopausal. No one else in family has had genetic testing. I was hesitant about panels because of the anxiety it would produce if they came up as inconclusive or positive, and they didn't know what to do with the results. I forget the names of the 3 panels I had done but I was told that if I tested positive for one of the panels (and I forget which one) that I would be eligible for an MRI based on the test. I was also told that because of family history/risk, that if everything came back negative, I would be eligible for chemoprevention - Evista. Everything came back completely negative, no inconclusives or variants. Do you know what they mean by "moderate" risk or why you are considered moderate risk? After the testing,I was told that I am still considered increased risk - lifetime risk is 15%. I am confused about how/why 15% is considered increased risk because I thought that the lifetime risk for the average woman is 12%. The risk calculator they used is at cancer.gov. It compares my lifetime risk of 15% to that of the lifetime risk for an average woman my age - but they say an average woman's risk my age is 8.6% not 12% and so it gets confusing. I don't know if my risk is double or just 3 points higher. I haven't decided about Evista. I would consider a second opinion.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi bmh:

    Here is a post from today, with links to articles about a recent study on twins:

    https://community.breastcancer.org/forum/73/topics...

    BarredOwl

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  • bmh
    bmh Member Posts: 4
    edited January 2016

    Thank you so much, BarredOwl, for that link! Wow, timely! Might be very useful to suggest to genetic counselling that my risk is higher than an ordinary sibling (although of course the purpose of the study is to explore the significance (or not) of genetic factors mroe generally in cancers (but I hope can be forgiven for using it for my own purposes too!). Thank you so much.

    Thank you also to Djabi53 and racy - I really appreciate your input and both posts very useful. About sonography. it doesn't seem to be used at all as part of the screening programme in the UK for sympton-less women UNLESS the mammogram is not clear. So I guess by not being offered an ultrasound each year they are effectively saying to me that my mammogram is clear and readable. I am just doubtful of that, as it has been said to be on several occasions by various people that a mammogram will not show up all cancers. As my sister's cancer was inflammatory (and I think inflammatory breast cancer is by its very nature Stage 3 on diagnosis - though i can;t be sure of this (I used to know this), I am concerned that cancer will be missed until it appears as a redness (as it did for my sister), hiding 'sheets' of cancer that were not seen until a 7 cm tumour was found on diagnosis (however, there were complicating factors in that she was pregnant and misdiagnosed for 12 weeks). Anyway, sorry for the detail, I just wanted to thank you, racy, for posting and wishing you continued good health.

    Djabi53 - your post has made me definitely consider going back to genetics to see whether other tests could be done and to establish my risk. 'Moderate' risk is the result of me simply having one sister who had cancer under 40. There are no other close family members with bc so that limits the risk - although my grandmother did have breast cancer (I think twice) but was treated successfully and she did not die from this, and I don't know how far she affected my risk assessment. My two other sisters share the same risk as me (moderate) and that's where I feel exposed - I personally feel my risk is greater but it is not factored in to assessments.

    In spite of all this, I am largely getting on with things and not worrying too much now. But I would be happier to 'wait and see' and trust mammograms if I did not have dense breasts and if my sister's cancer was not so aggressive.

    Thanks again.

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  • alicki
    alicki Member Posts: 661
    edited January 2016
    Hello,

    My two cents. If you contact the London breast institute in London in the UK, Professor Mokbel (one of the top 5 in the UK), I'm sure he'll be willing to help. Not only you won't be paying so much for an MRI (it's 1200 pounds with them), but he's knows what IBC is, has dealt with it and is one of the leading breast surgeons in the UK. He's extremely nice and compassionate. Just explain the situation.

    While the hospitals in my country were trying to figure out what the problem was and refusing to give me a diagnosis, he did (i.e lymphatic congestion). Moreover, you can get an ultrasound for about 250 pounds and their radiologist is one of the best in the country too.

    PM if you like and I'll give you the full details. The important thing, is that you feel as 'safe' as possible.

    Best
    Alicki

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  • bmh
    bmh Member Posts: 4
    edited January 2016

    Hi Alicki

    Sorry it's taken me a few days to get back to you, but thanks very much for your post. It is great to have a recommendation. I oftne find myself looking around online trying to see who might be best to see, so I much appreciate that. I'll google his details, and will PM you if I can work out how to do it!

    Thanks again.

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