High cancer risk worries

[erincassells]

I will start this be prefacing great advice offered from Carys and Wisemonkey on a previous thread. I'm seeing a counselor next week.

The last three or four months I've been on the cusp of waiting for terrible news, ie. cancer, etc..

I'm still not all the way past my current issues and waiting for answers.

I've been researching my risks of BC due to family history, habits in past, etc. and essentially I've found that I'm at a much higher risk for BC and feeling that I'm not so sure after the recent lump found that I'll go back to looking at things as I did.

I understand that treatments are progressively better than years past and there should be hope on the horizon, but I feel now that I'll permanently carry this huge fear of when, not IF.

Will it be an interval cancer that shows up between mammograms, or invasive or unsurviveable?

Disappointed in myself for losing my mental resilience to cope, but after the last few months it's as if a switch was flipped and now my breasts and body are ticking time bombs.

I have dense breast tissue, two benign findings (one via biopsy), erratic hormones/start of peri, used to drink, no kids, moderately early menses, and shoddy health on mom's side.. varied cancer, grandmother and ggrandmother, auto immune. My risk is almost double normal women, no idea on BRCA status.

I just dont know how to get past it...its like a dark cloud now. Not sure what I'm asking for...my anxiety on this feels unmanageable. Even after my mammo and ultrasound three weeks ago I'm wondering what's growing inside me and when it surfaces, will I be able to battle that life altering news?

Pile on guilt of seemingly sounding insensitive to those who have experienced cancer themselves...obviously stronger in their grit and resilience than I.

Just needing to get my fears out.

[Carys]

My risk is almost double normal women

Following on from your last thread - how have you got to the point of establishing you have 'double the risk' ? and what is double the risk ? (stats are often misrepresented by people with HA) because it doesn't look that way to me from what you told me ;)

[erincassells]

I used a National Cancer Institute (.gov site) calculator; essentially most women sit at .8 or .7 whereas mine is 1.2 - 1.4%.

I don't try to read into overall numbers except to me it means I have more or double the indicators for potential than the average woman.

As a rule, I refuse to use Google to lead to non empirically reviewed information that's false or not medically supported. I also would not assume to understand all statistical probabilities, but I do try to stay informed.

[Carys]

...and to me that just means 'marginally' more likelihood. I'm not understanding the stat you quote I'm afraid 'most women sit at .7 %' what does that actually mean ? Perhaps someone can help me out here, anxiety joe and Terry are good with stats and there are a few others who could find flaws in this I know.

Stats are a slippery slope to get started on to be honest, something I found out whilst having my own treatment, they don't mean anything certain and they are neither guarantees or prophecies. I think also, knowing that you have HA, are depressed and desperately scared of 'risk' going onto a site where you calculate 'possible risk' is very ill advised. You are re-enforcing that you have a reason to fear rather than working on boosting your morale. What about all the other factors that reduce likelihood, the healthy lifestyle you have adopted ? What about the fact that if you have '1.2 % chance of breast cancer' (and still I don't understand the stat lol) you could spend your whole life not having breast cancer but worrying about it ?

By the Way - I am really really glad you managed to secure a counsellor from next week, good work.

[erincassells]

Thank you.

From the calculator, it means average women risk factor in my age group is .7% whereas mine was reflected at 1.2%...and your absolutely right on my depressed state and fear letting that information influence me (a cognitive trap of confirmation bias where you pay attention to information that matches your beliefs). I thought research and medically supported information (not Google or Webmd) would give me objective info to help me process and be more rational about my fears, but alas, no. Definitely didn't.

I'm just in a fear loop that I can't find a way to get out of myself right now.

I'm glad I decided to go talk to someone. Heart, mind, body, spirit just can't see past gloom and doom.

[ankietyjoe]

First of all, looking at risk calculators online is just a recipe for mental anguish. There is no possible way they can be even remotely accurate for an individual, outside of the realms of mass statistics. For you, the data is completely meaningless. Researching disease online serves absolutely no purpose other than to eventually support and increase your anxiety. There is absolutely zero chance that doing this research will reassure you, it never does.

Also, 'double the risk' in terms of statistical analysis is also virtually meaningless in this context. If you bought a lottery ticket, you'd accept that you wouldn't win right? If you bought two, you would then have twice the chance of winning....but you still wouldn't win. The anxiety mind however, ONLY see's the word 'double'.

If you want to 'play the numbers', then start a lifestyle that DRAMATICALLY lowers cancer risk across the board. Eat only healthy, whole food. Avoid all processed food. Stop drinking, stop smoking, avoid stress and stop reading about diseases you don't have online. Stress is one of the biggest risk factors for all kinds of diseases, so why increase your stress by convincing yourself you have something you don't have. You are effectively creating a problem that doesn't exist, and destroying your life now worrying about an imaginary situation that might destroy your life in 5 years, 10 years, 20 years down the line. It's absurd, right?

[erincassells]

My rational brain knows you are right, and your perspective makes sense.

For some reason, I've somehow started to cling to this idea that some illness will come for me any day.

I eat mostly clean, fruits and vegetables, I exercise, I dont drink at all nor smoke, but assume that those factors won't make up for past poor habits or scary family history.

Other than starting counseling, I will continue to see ways to improve my fears and anxiety.

Thank you for your perspective on the stats, you were also right in it only fueling my fears.

[WiseMonkey]

If you have multiple female relatives that have died of BC then taking to your Dr about being tested for the BRCA gene would be a good thing to do. You can't diagnose yourself or your BC risk, only a specialist can do this. Please don't dwell on your past habits (eating/drinking etc) as they are of little relevance now. There are people who do all the right things and still get cancer etc, often there is no rhyme nor reason.

You say you have dense breast tissue, there are now 3D mammograms that can see through this, they cost more but are well worth the extra money (if you can afford it). Also the risk of anything nasty cropping up between mammograms is highly unlikely especially if you have a yearly one. My fiance's sister and a g/friend of mine both had small cancers picked up between mammograms, had them removed and were cured.

Benign beast issues don't predispose you to BC and are very common issues with women, so no ticking time bombs there. Also reading numbers isn't very helpful, there are so many variables and only specialists in their field really know.

I know seeing doom and gloom can be a struggle because I suffer from it too in varying degrees. I have a low level anxiety partially due to HA and partially because I have autoimmune issues which bring their own stresses. All you can do is your best ie. by having the yearly check ups/tests, then try and put your mind at ease. Try some counselling for HA and see if it helps your outlook on things/life.
I find that living in 'day tight compartments' helps me, I find things to look forward to in each day and things to be grateful for. Hope this helps x

[ankietyjoe]

I eat mostly clean, fruits and vegetables, I exercise, I dont drink at all nor smoke, but assume that those factors won't make up for past poor habits or scary family history.



Ask yourself why you ignore the positive habits that affect the risk factors and only dwell on the negative historical ones? The evidence that the lifestyle you are leading now makes a massive positive effect on overall health is overwhelming, so why are you ignoring it? Why are you assuming that it won't help, and if so why are you bothering? Deep down you know it makes a difference, and it's just habit that's keeping you in the negative spin cycle.

In terms of family history, genes have to be expressed. Epigenetics explains that a predisposition to a certain disease only means that a lifestyle or environmental trigger needs to be present for that predisposition to have any bearing on your health. People talk about a family history of diabetes for example, almost always ignoring the fact that it's not the diabetes that's passed down, rather the terrible diet choices learned throughout generations.

[erincassells]

Thank you Wisemonkey.

My ggrandmother and great aunt had breast cancer, unsure of age, etc. My grandmother was on chemo for 17 years battling lymphoma and other cancers, unknown if she had BC because she was so sick and they didnt test for it maybe whilst she was battling all else. I met her when I was very young before she passed in her late 50s.

My mom has autoimmune issues and is managing fairly well as of now. I understand the struggles of going to medical tests to determine cause of symptoms as my mom has for years, but things are better for her now then they were years ago. She's truly my hero related to health matters and dealing with things as they come.

Hoping the start of counseling will help me find a better way to cope. Feel like I've turned into a lunatic over the last couple of years with all that's gone on.

I suppose my depression makes me believe a bit that I don't deserve to be happy or healthy which is no good either..every day for a fee years now I've woken up with health related fears.

I'll keep trying to move forward best I can.

Best to you all and to your health.

[erincassells]

You bring up good points anxietyjoe
..I'm not sure why I ignore that side of it. I guess I assume at 42 for all the prior years of poor habits it might be too late (loads of wine, etc.) I suppose its possible that having a span of rough years I have primed mysel with catastrophic thinking rather than assuming things can be okay.

It's the strange symptoms and then subsequent tests that send me into a tailspin. In the back of my mind, despite knowing odds are low I automatically think that 'this' will be the time something happens.

[ankietyjoe]

So the thing to do now is practice the opposite of negative thinking. You now need to spend time unlearning those negative assumptions and start telling yourself you are creating good health habits for a healthy future.

You would accept that changing your diet and lifestyle for the better would take time to reap rewards right? So accept that it's going to take time to change the negative assumptions and thought patterns too. But, every time you sense a negative thought, intercept it and tell yourself that right now you know you're fine and are doing all the right things to stay fine. Just repeat it over and over again for months if necessary.

[StephA]

Sorry but I have to jump in here and say stop beating yourself up about your past habits! I was diagnosed with an aggressive form of breast cancer and was treated for it seven years ago at 36. I have no family history of it. BRCA test was also negative. In fact most people who get it don’t have a family history. Most BC is not hereditary despite what a lot of folks think. Anyway, I ate a very healthy diet, exercised regularly, never touched a drop of alcohol, never had a drug or even one cigarette. My point is cancer doesn’t discriminate. It’s a crapshoot as to whether anyone gets it or not! I don’t mean to scare anyone but it’s just how it is. Eating a healthy diet and exercising, limiting alcohol, etc. is important because it’s good for your overall health, but, do not think that it is what it takes to prevent cancer. I hate that some people think this way and I’m not the only one. It makes those of us who have battled the disease feel like it was something we did that caused it. I was in a support group for young women diagnosed with breast cancer and I can tell you that 95% of us in there ate well, didn’t booze it up, exercised, etc., yet we got it. Now with that said I’m not saying to eat whatever you want and be a couch potato all the time, but after going through what I did you can bet your ass that I enjoy junk food from time to time and have a lazy day whenever I feel like it. I still eat well, hit the gym and do weight training four times a week, but it’s also important to enjoy some things you like, like a donut or some wine if you want it. Sorry for going off on a rant but stop worrying about the past and throw the statistics out and relax!

[WiseMonkey]

Sorry but I have to jump in here and say stop beating yourself up about your past habits! I was diagnosed with an aggressive form of breast cancer and was treated for it seven years ago at 36. I have no family history of it. BRCA test was also negative. In fact most people who get it don’t have a family history. Most BC is not hereditary despite what a lot of folks think. Anyway, I ate a very healthy diet, exercised regularly, never touched a drop of alcohol, never had a drug or even one cigarette. My point is cancer doesn’t discriminate. It’s a crapshoot as to whether anyone gets it or not! I don’t mean to scare anyone but it’s just how it is. Eating a healthy diet and exercising, limiting alcohol, etc. is important because it’s good for your overall health, but, do not think that it is what it takes to prevent cancer. I hate that some people think this way and I’m not the only one. It makes those of us who have battled the disease feel like it was something we did that caused it. I was in a support group for young women diagnosed with breast cancer and I can tell you that 95% of us in there ate well, didn’t booze it up, exercised, etc., yet we got it. Now with that said I’m not saying to eat whatever you want and be a couch potato all the time, but after going through what I did you can bet your ass that I enjoy junk food from time to time and have a lazy day whenever I feel like it. I still eat well, hit the gym and do weight training four times a week, but it’s also important to enjoy some things you like, like a donut or some wine if you want it. Sorry for going off on a rant but stop worrying about the past and throw the statistics out and relax!

Thank you for your positive life affirming post StephA...it really puts things into perspective :)

[ankietyjoe]

The evidence that diet and lifestyle support your immune system, which in turn allows your body to fight cancer (of all kinds) is completely overwhelming. Your own experience aside, telling people that diet makes no difference is extremely shortsighted. Nobody is saying never enjoy yourself, and you still preach (rightly so) a healthy diet and lifestyle.

Most research into cancer is now focusing on boosting the bodies own immune system (most of which is in the gut) so that it can fight cancer itself. This information I got first hand from a friend who works in cancer research.

It's also possible (and I mean this without a hint of patronising at all) that what you think is a healthy diet, might not actually be a healthy diet. What we have been told the last 20-30 years is really not very good advice. Perhaps this is a topic for another time, but I think it matters.

[erincassells]

StephA, I've read many of your posts in response to fears here helping others. Despite my fears leaning towards my perceived risks, I've read plenty that says exactly as you've described with it all being up to chance in many ways.
I'm very glad to hear you are healthy now and I'm sorry if I've offended you.

My worries are intertwined with guilt that I could have taken better care of myself.

I've forgotten how to properly relax in the last few years.

[StephA]

The evidence that diet and lifestyle support your immune system, which in turn allows your body to fight cancer (of all kinds) is completely overwhelming. Your own experience aside, telling people that diet makes no difference is extremely shortsighted. Nobody is saying never enjoy yourself, and you still preach (rightly so) a healthy diet and lifestyle.

Most research into cancer is now focusing on boosting the bodies own immune system (most of which is in the gut) so that it can fight cancer itself. This information I got first hand from a friend who works in cancer research.

It's also possible (and I mean this without a hint of patronising at all) that what you think is a healthy diet, might not actually be a healthy diet. What we have been told the last 20-30 years is really not very good advice. Perhaps this is a topic for another time, but I think it matters.
Excuse me! I did not say diet makes no difference! I was saying that I still got cancer even though I eat clean and do all the things that are supposed to prevent it. My Oncologist who is also a world renowned researcher told me that my diet was healthy. I have always eaten a well balanced diet consisting of lean proteins and vegetables. My trainer is also a certified nutritionist with many years of experience, and she didn’t even need to tweak my diet when I started working with her, so excuse me for taking offense to your post! I’m an educated person who took nutrition classes in college as well. I do eat clean!

Erin, I truly hope you can get help with your anxiety but please don’t beat yourself up. A lot of damage that is done by a non healthy lifestyle can be reversed by clean eating and exercise. I learned this from some of my trainer’s other clients. You did not offend me at all! I’m sorry for any misunderstanding with my previous post. All the best to you my dear!

[WiseMonkey]

Excuse me! I did not say diet makes no difference! I was saying that I still got cancer even though I eat clean and do all the things that are supposed to prevent it. My Oncologist who is also a world renowned researcher told me that my diet was healthy. I have always eaten a well balanced diet consisting of lean proteins and vegetables. My trainer is also a certified nutritionist with many years of experience, and she didn’t even need to tweak my diet when I started working with her, so excuse me for taking offense to your post! I’m an educated person who took nutrition classes in college as well. I do eat clean!

I agree, many people who get cancer (and other serious diseases) have lived healthy (and often stress free) lives. They get these because of genetic mutations that take place in their DNA that are beyond their control.

We had a lovely teacher at school who died of non-smokers lung cancer. None of her family members smoked and she did not grow up in a smoggy city! My fiance's aunt died in her nineties (of old age) yet she'd been a smoker all her life!

Diet and lifestyle are important but they're not the be all and end all of health, genetics can play a big part too.

[StephA]

I agree, many people who get cancer (and other serious diseases) have lived healthy (and often stress free) lives. They get these because of genetic mutations that take place in their DNA that are beyond their control.

We had a lovely teacher at school who died of non-smokers lung cancer. None of her family members smoked and she did not grow up in a smoggy city! My fiance's aunt died in her nineties (of old age) yet she'd been a smoker all her life!

Diet and lifestyle are important but they're not the be all and end all of health, genetics can play a big part too.
Thank you WiseMonkey! This was the EXACT point I was trying to make. Well put! It’s frustrating enough to battle an illness, but depressing when you live a healthy lifestyle and still get cancer or any other illness, like you say.
I’m truly sorry to hear about your losses. Thanks again for clarifying what I was trying to get across in my first post.

[erincassells]

Thank you all again for the considerate posts and offering your advice and encouragement.

[Carys]

I agree entirely with Steph, totally. I am glad she posted it. I have had this discussion so many times on a breast cancer forum, with newly diagnosed women who are wrought with 'guilt' and analysing that they caused 'C' somehow. Besides the women that blame themselves, there are many who once they have had the diagnosis presume that they can control it happening againg by adopting excessively obsessive lifestyles where everything that enters their mouth is monitored. This is part of the reason I say that stats are a 'slippery slope', because most BC cases are not related to any family history, that is an over-played theory. I was told that BC is just 'once of those things', in a huge number of cases it is just 'unlucky shit happening' and no risk factors can be in evidence. Of course it always makes sense to try and adhere to a healthy life style that avoids 'risk factors', for example there is 'proof' that exercise diminishes risk....but it should be borne in mind that these are large scale stats of many tens of thousands of people used to formulate the general risk trends.It may have an effect in one persons case that they exercise, but not in another person's case. The point is that all any of us can do is live in a way that we are psychologically comfortable with, the risk factors may be of relevance to us, they may not, no guarantees and no prophecies as I said earlier. You know what also - even if you are unfortunate enough to get a diagnosis of BC, no risk factor can be attributed generally to the cause (unless of course you have BRCA).

I was also perfect BMI, teetotal, non smoker, vegetarian with good diet, not a massive cardiac exerciser but very physically active and a walker, 2 female family members with BC but not my closest female family line. Steph had a rarer form of BC, generally seen in younger women which is harder to treat. With 1 in 8 having BC at some point in a lifetime (usually old age) that accounts for the number that are seen in most families. Now, I repeat what she also said, that this is not said to scare people, but part of dealing with HA (in my opinion) is learning that life holds risk, things do happen, but as Steph and I prove, there is modern era medical strength and learning to reduce the fear of a diagnosis is quite liberating and learning that adopting healthy lifestyles is important for so many reasons - but its no guarantee of anything. So many people, erin included, fear and fear and fear...I won't cope IF the absolute worse happens, IF I have a diagnosis of something.....but you know what everyone will at some point in life and when your back is against the wall you do what is necessary to get through. I don't even think its about bravery, to be perfectly frank (and many people I know who have had C agree) its about being thrown into a situation where you have no choice and just get on with what is needed.

Something is gonna finish us off, for some it is earlier in life, but we are all mortal and for most this will be in old age.

That was a ramble.....but wanted to add it is very exciting to hear about and read the immunotherapies research that are taking place in the last few years It is beyond exciting, the thought that at some point brutal treatment methods could be a thing of the past. Wanna do something that really tries to reduce probability of people dying of cancer ? Give to cancer research! Then adopt the very obvious and well known healthy living strategies that are known to be beneficial for all sorts of illnesses, and live for the day.

[ankietyjoe]

The people who live the 'perfect' life and still get cancer. The ones that are here telling us that the still got cancer even though they were healthy. Perhaps if they weren't healthy, perhaps if they still drank, smoked, ate fried food and never exercised, perhaps they wouldn't have survived.

It's about playing the numbers (which this thread is really about) and having cancer (of any kind) whilst being healthy is guaranteed to be more survivable than having cancer (of any kind) as an already sick person. Surely that point cannot be argued with?

And diet aside, we ALL lead far more stressful lives than we ought to, whether we recognise it or not. An absence of stress is more important than the diet anyway.....in my opinion.

[erincassells]

Carys, anxietyjoe, Steph, Wisemonkey...

I read your perspectives and wish desperately that I could adopt that line of thinking easily and quickly...I do. Everything you bring forward in your comments makes complete sense..every morning I wake with fears of 'what ifs'.

Somehow over the last few years I've become highly dysfunctional in my thinking to the extent that its ruining every waking day of my life. I'm going to keep trying to do better and just do my best. Some days the fear feels unbearable and hopeless.

Thank you all again.

[ankietyjoe]

Carys, anxietyjoe, Steph, Wisemonkey...

I read your perspectives and wish desperately that I could adopt that line of thinking easily and quickly...I do. Everything you bring forward in your comments makes complete sense..every morning I wake with fears of 'what ifs'.

Somehow over the last few years I've become highly dysfunctional in my thinking to the extent that its ruining every waking day of my life. I'm going to keep trying to do better and just do my best. Some days the fear feels unbearable and hopeless.

Thank you all again.

Changing thinking habits is incredibly hard, so don't think I learned this perspective quickly. I drove myself mad with HA for years before I really got it. I once had a bleeding mole and wrote a will. It's absurd. I worked my ass off to NOT think the way I used to, and that's what you need to do too. It took me months and months to re-learn how to think normally.

[erincassells]

I hope I can get through it. It's literally driving me to the brink lately. I've gone so far as to check my life insurance policy and verify clauses. I have never struggled more in my life.

[Carys]

An absence of stress is more important than the diet anyway.....in my opinion.

Hugely agree with this !!!!


Perhaps if they weren't healthy, perhaps if they still drank, smoked, ate fried food and never exercised, perhaps they wouldn't have survived.

Also a good point.


I hope I can get through it. It's literally driving me to the brink lately.


You will, its going to take some time, and won't be easy - the first step with counselling is a good one though. How did your duodenum scan go ?

[erincassells]

Thank you. I had the upper GI live swallow with barium on Monday and another endoscope yesterday, everything appeared to be normal asides from mild esophagitis from reflux. He took tissues samples which I have to wait on, but otherwise all looked to be okay. My GI system has been a wreck for months and started the spiral...add in the mammo scare.

So, now I have to wait on results. Even with good news yesterday, I immediately start to worry on waiting for final results.

The fear loop that never ends.

I really am trying to stay rational, but I admit most days I fail miserably.

[Scass]

That looks really positive. I had pretty much the same thing when I had an endoscopy. They also took samples which came back fine.