Refusing an early biopsy? Any opinions?
Comments
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trying not to worry:
I wouldn't pick a fight that is in your head (with all due respect), ie: the medical establishment. You are not a warrior, no5r someone who is being fought against. Just a patient.
I cannot in all honesty preach and say "you must get biopsied" because even though I agree with that sentiment, I do remember the paralyzing fear. My personal choice was to read nothing, talk to no one, but allow my doctors to set up appointments and show up for them all. Just follow orders. That led to a cancer diagnosis, but excellent care and I know that, in my case, had I done nothing I would be feeling it in my bones or brain today.
Don't make battles that don't exist. The medical establishment isn't fighting you, it isn't the doctor's fault that you have lumpy breasts and that a biopsy is deemed worthy. It's the fault of nature.
Don't blame the messenger. It's not an intelligent reading to make, and it doesn't help you. Illness is a part of nature - not someone's fault, though it's understandable that you may feel the precursor of anger.
I suppose my only thought for you is to keep it real, not get caught up in imaginary David vs Goliath battles, and just go through the motions without thought (if possible). The fear is paralyzing, and may be unnecessary.
And keep posting. Your feelings are perfectly understandable.
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correct! no doctor can tell me whether I have DCIS without a biopsy. My chances of having DCIS or something worse are just as high as that of any other woman in my age group on this planet. Are you suggesting to biopsy the entire female population over 40?
In fact, my chances might be even a little smaller than those of the average woman in my age group, who has never been screened, since I do have a mammogram and an ultrasound that tell a radiologist and a surgeon that it is very very very unlikely that I do have cancer right now.
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let me add:
i have tremendous respect for all of you here; I am not trying to pick a fight with any of you or the doctors.
Yes, I'm lingering around here because there is a fight going on in my head.
I am under tremendous pressure. I have a few hours left to pick up the phone and schedule a biopsy in the US for this week, before I have to leave the country for good and will be looking into a waiting period of at least three month before I can see any doctor again.
Part of the reason for my posts is to convince myself of what I am thinking ....
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Pick up the phone now. Schedule it.
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I had my stereotactic biopsy today. I have the exact same thing.. microcalcification cluster. it wasn't there last year but is now. I didn't hesitate to schedule the biopsy because a dear 29 year old friend of mine had breast cancer a year ago that has now spread to her liver, spine, brain and lungs. I am 47 soon to be 48 in 2 months and I do want to know that I did everything I could when given the chance to prevent me from having to go through what she is or others on this site. I don't know if I have breast cancer yet, but will find out Thursday. The biopsy was nothing. The skin cancer surgery I had on my nose (1 year apart) was way worse and I have the scars, and luckily still a nose, to prove it. Personally I think you are crazy not to have the biopsy... but it is your decision and I wish you best and hope you have the follow up mammogram in 6 months and make the decision then... I didn't get the option to wait and see, they recommended the biopsy now, so I did it.
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"My chances of having DCIS or something worse are just as high as that of any other woman in my age group on this planet. Are you suggesting to biopsy the entire female population over 40?"
Sorry but what you said about your risk is absolutely untrue.
According to your surgeon, you currently have a 15% chance of having DCIS (or possibly something worse - there could be invasive cancer hidden with the DCIS). That's your risk right now. Today. 15%.
The average woman in North America has a 12.2% lifetime risk of being diagnosed with breast cancer. That's her risk spread over her entire adult life - approx. 60 - 70 years. This risk starts out very low when women are in their 20s and increases with age. Here's a summary of risk level by age:
From age 20 to 29: Approx. 0.10%
From age 30 to 39: Approx. 0.43%
From age 40 to 49: Approx. 1.45%
From age 50 to 59: Approx. 2.38%
From age 60 to 69: Approx. 3.45%
From age 70 to 90+: Approx. 4.39%
Total Lifetime Risk: Approx. 12.2%
Probability of Breast Cancer in American Women
So for someone your age, a woman in her 40s, there is a 1.45% chance, or a 1 in 69 chance, that she will be diagnosed with breast cancer at some point during those 10 years when she is in her 40s. This means that her risk in any one year during her 40s is approx. 0.145%. Your risk right now is 15%.
What does this 15% mean? You've said that "I do have a mammogram and an ultrasound that tell a radiologist and a surgeon that it is very very very unlikely that I do have cancer right now". A 15% risk does not mean that it's "very very very unlikely" that you have cancer right now. A 15% risk means that that odds are strongly in your favor, but by the same token, a diagnosis of breast cancer is very real possibility.
This is your decision to make. Please don't make the decision based on bad information or a misunderstanding of your breast cancer risk or because you happen to have a distrust of the medical system. Don't make the decision based on wishful thinking. Make the best decision for your health.
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You're in the wrong place if you want breast cancer survivors and sufferers to convince you that you're right to ignore a suggestion of a biopsy. So, who knows, maybe subconsciously, you know that you're playing Russian Roulette.
It's your life, it's your health, it's your future. It's your choice. Do what you want. No one's going to give you permission to ignore your doctor, if that's what you're looking for. These are people who chose to know what's going on in their own bodies, and be proactive about it.
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Im having deja vu on this thread. Sounds similar to that surveillance for dcis thread.....
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I was typing out a reply on this thread earlier today when that same thought hit me Letlet.
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no apologies necessary, I am arguing with myself ....
I am not American and have been used to different standards of care than what I have experienced in this country. It's no secret that the US system is one of the worst (and most expensive) in the so-called 'developed' world; that money gets thrown blindly onto high-tech equipment (which has to be used in order to be paid for) and physicians no longer know how to talk to patients.
My gyn screamed at me when I mentioned that I might not go for the biopsy
My radiologist was out of breath and took exactly 3 minutes to tell me that there is nothing to worry about, but I will have to have a biopsy.
My surgeon struck me as simply dumb; she might be a great surgeon (knowing how to cut) but certainly does not know how to talk to people.
they and all of you know a lot more about BC than I do; yes, they are the experts; that does not mean that I can trust them and this (multi-billion-dollar) business is all about trust.
there are many posts here that suggest better relationships to your "experts," maybe it will be worth to continue looking ...
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i was writing the previous post hours ago, before I went out to dinner (but didn't hit "submit") with a friend who also told me to have the biopsy done ... I was not expecting that from him.
Yes, it does feel a bit like Russian Roulette right now ...
I flipped a coin during dinner for or against the biopsy; it's not the outcome that is relevant; it was meant to be a kind of psycho trick to find out about my desire for a particular outcome; it would be really stupid to go with the outcome of a random coin flip, but it's not stupid to go with what you want; the coin was a random binary decision device meant to trick my consciousness ....
As I said several times before, I don't expect any of you to tell me that it would be ok not to have the biopsy done; I would not tell this anybody either and certainly do not expect anyone diagnosed with BC to do that; that's not what I am here for; I am here to listen to your counter-arguments to my almost-decision, all of which I take very seriously and who knows maybe one of you is about to convince me to act otherwise
Beesie, thanks for the additional statistics! I however do not think that you respresent my case accurately in your post. According to my experts (and I don't have any other option than to rely on their statements right now), my chances of having an invasive cancer are 0% right now. The 15% chance is for DCIS only. I asked about ten times whether the existence of an invasive cancer can be ruled out and the answer was an affirmative 'yes' from both the surgeon and the radiologist. Of course we all know that there is no 100% certainty in anything in that game and nobody would make an absolutist statement.
the surgeon thought I was a second grader with limited verbal capabilities and drew some really nice pictures for me of possible duct abnormalities. One represented DCIS (15%), another represented a contracted duct due to aging (85%); the third picture was of DCIS turning invasive, which she immediately crossed out with huge self-assured big strokes, two crosses!!!; not an option in my case!!!! This is not my opinion, but the expert's statement!!!
And taking such an expert statement at face-value, the ordered biopsy sounds plainly ridiculous.
Now, we can argue about whether the surgeon's assessment has any validity as it is purely based on imaging technologies, but this is a slightly different issue. I am much more inclined to believe you, beesie and everybody else on here than this surgeon with a second grader intellect. But that also puts her expert recommendation for an excisional biopsy into serious question.
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I'm sorry that you feel the medical system in the US is so bad...I'm rather thankful for it right now since it caught my cancer a year earlier then it should have thanks to a tomosynthesis scan not found in all diagnostic facilities.
I'm not sure why you're so sour with the medical industry but its very obvious that its clouding your judgement and your perception of how you're being talked to and treated. I have never had a medical professional 'scream' at me. I don't expect my doctors to have a fabulous bedside manner; I expect them to be fabulous at what their job is - to save my life.
It appears, by your posts, that you've already convinced yourself that the US doctors are only after your money and that its very unlikely that you have cancer (which cannot be determined without a biopsy) and yet you're still here and sharing your very slighted view on what your doctors are supposedly saying to you. There is no way a doctor can tell if you have any form of cancer without a biopsy. Even then, things can change and very quickly. I have invasive ductal cancer and went through intensive scans to confirm that it was localized. All scans came back that my cancer was localized, but guess what? In the 2 week period between those scans and my actual lumpectomy, my cancer spread to my lymph nodes. In the blink of an eye I went from being stage 1 cancer facing radiation treatments to being stage 2 cancer and facing chemo and an uncertain future.
If you want to know if you have cancer, get a biopsy. If you want to continue toying with this issue and posting day after day, wasting precious time that you cannot get back, then by all means...keep posting. Its your life, your body.
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The medical system in the US is bad? Hmmm. Couldn't disagree more. Sounds like your distrust of doctors is the real issue. You have had several on your medical team recomend a biopsy. They are the experts, you are not. If you don't like your current team, find one you do like.
Its been almost a month since the recomendation to have a biopsy. It's a biopsy...it's simple...pick up the phone! Hopefully it's nothing and you can move on with your life.0 -
Serious truth, Trying: if you do hate or not trust the American healthcare system, don't use it. No one is going to hold a gun to your head and force you to. You are an adult and adults make their own decisions. Equally serious: it may not be perfect but many feel the US healthcare system, expense aside, is the finest health care system in terms of diagnosis and treatment in the world at this time. AND you sound as if you are one of the lucky ones: it is the economic system in the US that is in such terrible shape not our treatment and diagnositic offerings. Many Americans cannot not afford the system or health insurance and I believe would and do give their lives to just get into that system and get diagnosed and cured. That's just the truth.
It sounds to me like you are extremely scared and I absolutely do not blame you. I am petrified of all this stuff, too -- to a far greater degree perhaps even than you are and strikingly often with less of a reason. The media has polluted me in terms of breast cancer. I see it as everywhere and everyone as having it all the time, myself included. Emotionally everytime I have a mammo, sono, MRI I can't really tell the difference between the screening for breast cancer and breast cancer. I beg of you not to put yourself through what I do if you possibly can help it. It is a stressful way to live.
I hope you find some resolve about all of this, or even some of it. Mostly, I wish you good luck and good health. As others have told you, what you do from this point on is completely up to you.
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You may want to look into molecular breast imaging (MBI or BSGI). I had this test a few weeks ago at my local breast center. It took about 30 minutes and I was there about an hour total. I received an injection of a tracer that accumulates in cancer cells and makes them "light up" on the computer screen. They took three images of each breast and in my case there was no evidence of breast cancer. If they do see cancer then they will move forward to a biopsy but if all you have is cysts and calcifications then this test may keep you from having an unnecessary biopsy. I would definately recommend this to anyone that has had a inconclusive mammogram or ultrasound.
Right before my test I met another patient that had a cancerous lump that did not show up on her mammogram and was found by BSGI. She was incredibly inspiring and made me thankful that this test was available to me.
Best of luck to you!
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A few points:
1. You say that I did not present your case accurately. "(M)y chances of having an invasive cancer are 0% right now. The 15% chance is for DCIS only." Ah, so you are in the "DCIS is not cancer" camp! Some things to consider: Most types of cancer start in a pre-invasive state when they first develop. The debate as to whether these early stage pre-invasive cancers are cancer or not seems to only rear it's head for breast cancer. I don't know why this is. But if someone has another type of cancer that was caught at a pre-invasive stage, no one would be telling that individual that it's not cancer. It's true that there are some "experts" who are very vocal in the press and who contend that DCIS is not cancer but they are the minority. Most experts do in fact consider DCIS to be cancer. Some examples:
- Ductal carcinoma in situ (DCIS) is the most common type of non-invasive breast cancer. http://www.breastcancer.org/symptoms/types/dcis/
- Carcinoma in situ This term is used for an early stage of cancer, when it is confined to the layer of cells where it began. In breast cancer, in situ means that the cancer cells remain confined to ducts (ductal carcinoma in situ)......Ductal carcinoma in situ (DCIS; also known as intraductal carcinoma) is the most common type of non-invasive breast cancer. DCIS means that the cancer cells are inside the ducts but have not spread through the walls of the ducts into the surrounding breast tissue. http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-what-is-breast-cancer
- Ductal carcinoma in situ (or DCIS) refers to the most common type of noninvasive breast cancer in women. In situ, or "in place," describes a cancer that has not moved out of the area of the body where it originally developed. With DCIS, the cancer cells are confined to milk ducts in the breast and have not spread into the fatty breast tissue or to any other part of the body (such as the lymph nodes). http://www.imaginis.com/breast-cancer-diagnosis/ductal-carcinoma-in-situ-dcis-3
- DCIS is considered the earliest form of breast cancer. http://www.mayoclinic.com/health/dcis/DS00983
- Ductal carcinoma in situ (DCIS) is a preinvasive form of breast cancer in which cancer cells arise in the milk ducts, but have not spread. DCIS can progress over time and break out of the milk ducts to become invasive (infiltrating) breast cancer in some women. Treatment for DCIS may consist of surgery and radiation therapy. (http://www.mskcc.org/cancer-care/adult/breast/about-breast).
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So no, I did not present your case inaccurately. Based on what the mammogram has shown to be in your breast, sitting here today reading your computer you have a 15% risk of breast cancer. This compares to the average woman your age who has an annual risk of 0.145%.
2. The surgeon told you that you have 0% risk of invasive cancer. That's simply untrue. There is no way to know that. I suspect that the surgeon said this to reassure you. Doctors sometimes do that. The surgeon obviously could tell that you were resistent to having a biopsy. She may have interpreted this to being due to a fear of being diagnosed with breast cancer. So she may have been trying to reassure you that this is unlikely to be anything really serious, but please get it checked out. That's probably why she said that there is 0% chance that you have invasive cancer. If you have the biopsy and invasive cancer is found, then she'll just say "Oops, I was wrong. I really didn't expect this". But at least she would have gotten you to have the biopsy.
As for what your risk of invasive cancer really is, it's probably quite low. I'd guess that since all your doctors are pushing you to have the biopsy, the rating on your mammo is a BIRADs 4. BIRADs 4 means that whatever is seen on your mammo films is unlikely to be breast cancer but breast cancer can't be ruled out. BIRADs 4 always comes with a recommendation to have a biopsy. BIRADs 4 come in a wide range, and yours might be a 4A. That could be why the surgeon said your risk of breast cancer (DCIS) is only 15%, and that could be why she's saying that you have 0% risk of invasive cancer. The 0% is simply not true, but if your films are a BIRADs 4A, then your risk of invasive cancer is likely very low. About 20% of what's thought to be DCIS turns out to be invasive cancer so if your risk of DCIS is 15%, it would mean that your risk of invasive cancer might be about 3%. That's still 20 times more than the average woman your age (which is not really relevant but seems to be something that's a consideration for you).
3. The surgeon you talked to has the communication skills and bedside manner of a gnat. Guess what? So do a lot of surgeons. They are well trained for surgery but a lot of them aren't the best communicators. And she talked down to you, drawing pictures. Well, that's what surgeons often do to try to explain difficult medical concepts to patients. Maybe that wasn't the right approach for you, but perhaps this surgeon has learned from her experience that this is the best approach for many of her patients. Who knows? What I do know is that you shouldn't judge a surgeon based on his or her communication skills because so many of them are really crappy communicators. And you most definitely should not discount what a surgeon says because she's bad at communicating. It's not how she says it, it's what she said that's important.
4. You are questioning the abilities of your surgeon in part because she suggested that you have an excisional/surgical biopsy. Obviously she suggested that because she's a surgeon so she wants to do surgery. Well, NO, actually. I can guarantee you that in North America every day there are thousands of surgeons who recommend needle biopsies rather than surgical biopsies. The reason your surgeon recommended a surgical biopsy is probably because you'd already explained all your reasons for not wanting a core needle biopsy. So since the surgeon (and the radiologist and your gyn) all believe that you should have a biopsy, a surgical biopsy is therefore the next obvious recommendation.
5. I'm not in the U.S.. I'm in Canada. Our medical system is very different than that of the U.S.. I've had breast issues all my life. I've had lots of biopsies, most but not all ending up with benign results. The type of biopsy recommended (a simple fine needle aspiration done on the spot in the doctor's office, a core needle/stereotactic biopsy, an excisional/surgical biopsy) has varied depending on the degree of concern about what's shown up on my films, and depending on what the surgeon thinks it might be. When something has shown up that isn't particularly concerning but that still warrants watching, I've been put on the 6-month "watchful waiting" program (that's usually associated with a BIRADs 3) specifically so that I can avoid having an unnecessary biopsy. Based on everything you've said about your situation, there's no doubt in my mind that my doctors here in Canada would send you for a core needle/stereotactic biopsy. So don't let your dislike and distrust of the U.S. medical system lead you to assume that they are wrong about this and that they are recommending a procedure that is not necessary. You'd get the same recommendation in Canada and probably in most countries.
The surgeon talked to you like you were a second-grader. No offense (honestly) but reading your posts, it seems that you are acting a bit like a second-grader. You are hitting your fists on the desk and saying "No No No" to everything you are being told and every argument that's made. You are shaking your head back and forth and blocking your ears. Okay, maybe not quite
. It's reasonable (a good thing, actually) to question what you are being told and to do your homework and get educated about something like this. Everyone should do that. This is serious and you are right to not want to have an unnecessary biopsy. But the arguments you are making are not serious arguments. The radiologist only spent 3 minutes with you. The surgeon drew pictures. They can't be believed because they are telling you not to worry but then they are saying you need to have a biopsy. You don't like the U.S. medical system. How is any of that relevant to whether or not you should be having a biopsy? 0 -
You said you are leaving the country. Where, exactly. If you are going to Lower Slobovia you better address it here. If you are going to the UK, I think they do a better job.
This really isn't a debate. You have calcs. Either you are going to find out what they are, or you are not. It's that simple.
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TNTW, you sound like a very angry person. Maybe you have good reasons to be angry, but all anger ultimately does is turn inward and hurt the one expressing it. I don't know you and could, honestly, care less about whether you get a biopsy or not (your body, yada yada yada). I do question your rationale for taking such a chance with your life, but whatever. I really do not suffer fools well. Yes, these are harsh words, but you're putting out a lot of bait. I'll bite.
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I agree that, of course, it's your own body to do with what you please. But I have to ask, what was the point of having diagnostic mammograms and ultrasounds for the past seven years if you were just going to ignore a finding that didn't sit well with you? If you didn't want to know, why go through the hassle and expense in the first place?
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I had an an excisional biopsy recently that came back b9. Would I do it again? H*ll yes! I know it's your body and all and I couldn't agree with digger more.
From someone who has watched her mother and favorite aunt die from this dreaded disease, I believe it is cruel to toy with your loved ones this way. I know it may be a small chance that this suspicious area is actually cancer. But really would you want your family and loved ones to suffer if you let this ride until advances? A small area can contain anything from a very agressive cancer to b9 mass. Think about it. How much are you willing to gamble? You only get one life.
The surgery is doable. It's not too much pain. Your incision will probably be very small and won't deform your breast. If you decide to do it and need any advice, I'd be happy to help. Please, consider it, if not for yourself, think of your family and friends. And if you don't like or trust your surgeon, get another one that you do.
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Go and get the biospy!!!!
I am 38, had my baseline, had to come back because they saw some microcalcifications. Radiologist and BS recommended biopsy, even if mine were most likely the 85% good ones. Well, guess what? I got the 15% card. Small IDC, some DCIS and BMX scheduled for next Tuesday. Hopefully nothing in the lymph nodes. But God only knows what would have happened if I had done the wait and see approach. Get peace of mind and do the biopsy. It could safe your life!!!!
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I agree - my friend waited 1 1/2 years after being told the mammogram was inconclusive. So not really her fault for waiting ---but--the next mammogram showed IDC. She ended up with a lumpectomy and 2 positive nodes. Doing fine now, luckily, but maybe if she hadn't waited she would not have needed the chemo---
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Folks, I think our time is being wasted.
Trying: We are busy adults with lives. Stop messing with us. Do what you will do, and think what you will think. We are not debating you idly. It appears that you are here for the intellectual stimulation of seeing how far your sophistry can get you, how provocative you can be and how well you can swipe at your imaginary windmills, like Don Quijote.
If you've got a comment to make about the healthcare system of any country, go to another part of the forum. Stop dressing it up as part of a life and death decision for you. That's intellectually dishonest, morally callous and selfish with women here who have worked hard to to help you in the best way they know how. And extremely tedious.
We are here for the real thing. How dare you treat us like dinner table company.
And I, for one, am out.
Man, I'm not usually this direct, but I do loathe being manipulated.
It's sad how one gets to the point where one smells a troll a mile away.
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Athena, I agree - and you are awesome! I did not bother posting on this thread because I think either this person is "Rena" (from the surveillance thread) or another troll.
Because you ladies are so caring it seems we are seen as an easy mark. It is better to be too caring and waste time on a troll or two, than not care, but sooner or later you just have to let go.
Trying can do what she wishes, and she will live with the consequences (good or bad) of that decision, if she is real. If she isn't real ... well, if we stop feeding her she will go away.
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You are right, I am angry and scared, but I am not trying to manipulate anyone here. I don't know what you mean by "troll".
Most of us make decisions not only based on a collection of facts, but maybe more importantly based on past personal experiences, on what people close to us have been going through.
my reservations and suspicions about the US health system are a result of some of those personal experiences:
- a close friend recently killed himself; he had AIDS and was pronounced dead a decade before his second and ultimately successful suicide attempt
- my sister is happily living with MS, because she has been rejecting almost everything the doctors recommended. She is a nurse in neurology.
- a close friend with breast cancer recently quit the "system" after surgery - no guarantee that the cancerous cells were all removed - and took healing into her own hands after a multitude of mistreaments and contradictory diagnoses.
I am not saying that any of this should matter to any of you; this is my background! I am only trying to explain and assure you that I am not here to manipulate anyone or exploit your care and concern.
Beesie, your clarification was very helpful!
I am not in any camp; I was just told that DCIS is not cancer. I did not know that this is controversial.
BTW: I am moving to Canada.
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Sorry you are dealing with this. I too have had friends with AIDS. A very close friend died from the disease and yet another continues live with it as a chronic condition. He was one of the first to be declared HIV positive. It took over 20 years before it became AIDS. He credits his success with his vegan diet. My friend who passed was also a vegan. The difference between the two is that my second friend knew early on and was able take appropriate action concerning his health. My first friend was not diagnosed until he was full of lesions and had lost over 50 pounds. He was a thin man to begin with.
A biopsy is not treatment. It's to determine the actual pathology of the area. Once you know, you can decide how you want to treat it. It's totally up to you. But I wouldn't waste anymore time. Surgery of any kind is a scary proposition. But it's not as complicated or as dangerous as many others. It's an out patient surgery that usually doesn't require general anesthesia. You can also ask for a seperate pathology lab to check over the tissue just to make sure it's correct. You will know once and for all. If it's benign you'll be able to put cancer behind you. If it isn't you will be able to act accordingly whether it be conventional medicine, alternative medicine or a combination of both. Good luck to you whatever you decide.
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Beesie,
your statement about the Canadian doctors was a bit of a wake-up call.
Yes my BIRAD is 4. Nobody told me what you just explained.
An open biopsy is no longer an option for me in the US, but I might still be able to schedule the stereotactic core bisopsy, before I get onto the plane early next week.
I will call the cancer clinic first thing in the morning.
I'll let you know.
Thank you all for your help.
I really did not mean to offend anyone. All the best to everyone on here.
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I really think its time to get back to helping the 'newcomers'.
Let's put our energy somewhere else besides on this thread. I don't believe this thread was started with any integrity at all.
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I think you have to live in Canada for a while before being covered by the national health plan. You should find out about that and take it into consideraton as you make your plans.
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No offense taken from me. I hope you can schedule it for your peace of mind. Good luck & have a safe trip.
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