Breast cancer overdiagnosis

brial

I am 42 years old and no cancer history in my family. I had my two kids at 35 and 37. Because of late pregnancies and dense breast tissue I was asked after each mammography to have breast MRI (yearly mammography starting with year 2016). I did an MRI on June 2 (regret now that I did). The result says: "in the right lower outer quadrant, 5:00, 6 cm from the nipple, middle depth there is a focal nonmass enhancement measuring 2.6 X 1.2 X 2.0 cm with clustered ring internal enhancement pattern. Kinetic evaluation demonstrates rapid enhancement (peak enhancement 427%) and heterogeneous delayed kinetics (85% persistent, 5% washout). Suspicious BI-RADS Category 4 - Giving the low probability of accurately localizing this finding with ultrasound, and MRI guided biopsy is recommended"

I talked with the radiology doctor and this is a mild to moderate concern with 1 in 4 chances to be cancer. I'm not sure if this prognosis includes DCIS or LCIS. I'm concern with overdiagnosis and I want to refuse the biopsy and opt for a 6 months follow up MRI to check for changes. I am against treating DCIS or any carcinoma stage 0. I think this puts to much stress on the body and the body might have the ability to control that. However, if something gets to stage 1 and more I agree to the treatment.

I'm a healthy person and I have absolutely no symthoms or signs/changes in my breast to make me believe that this is a concern. Am I crazy to refuse biopsy? Would 6 months or 1 year make so much of a difference that this can be fatal? I will monitor if I have any changes in my breasts. I'm a strong believer that the more you try to prevent a cancer stage 0 that might never develop in cancer in a lifetime the worst it is. Patients might have more health problems from tamoxifen and radiation therapy than if the cancer would have going its own course and treated when is stage 1 or 2. Also, I'm concerned that disturbing precancerous tissue with a biopsy will make those cells to get out of place that was otherwise considered "in situ"

Please advise. TIA

Toyamjj

You have a very interesting point of view and I'm not gonna knock it, If I was in your situation I could see my self questioning it as well. However at the end of the day I would go ahead with the biopsy and treatment, I truly believe early detection is key, wish I could have been a stage 0. One of my best friends sister was diagnosed, stage 0 want through a little chemo and some radiation. 5 years later she is still cancer free and is doing well.

wrenn

Your body. Your choice. You can do whatever you think is right for you. The people you spoke to are professionals with medical knowledge. We are people with breast cancer who all have different opinions so your answers here will be random and unprofessional and you will likely end up choosing the answers that are similar to what you already believe.

So MY (unprofessional) opinion would be to do whatever helps your comfort level since medically waiting very likely won't make a difference.

Edited: to adapt my "opinion". After reading all of the responses here I agree that getting the biopsy now is a good idea. I'm glad you got all the input you did here. Best of luck for benign results.

MCBaker

DCIS, especially if it is large, might be hiding small areas of invasive cancer. If that invasive cancer is HER2+, 6 months or one year might be too late. See my history. Disturbing precancerous tissue does not precipitate invasive cancer. Precancerous tissue does not (yet) have the mutations which allow it to become invasive. I think you are holding on to conflicting ideas in order to reduce your anxiety and fear. Let go, and follow their recommendation.

apricotjam

a biopsy would let you have clearer info. They wont make you undergo a treatment even if the biopsy does detect cancer. But it will give you a more accurate sense of what might be going on. That will then give you a better answer to whether watch and wait at y month intervals is an ok option or not.

JulieSim

Welcome and sorry you had to join this forum. I am 39 with two young kids as well, recent diagnosed with DCIS. When I was diagnosed my reaction was very similar to yours, except I wasn't as lucky to have good baseline MRI- so my DCIS was HUGE and I couldn't save my breast.

The decision is totally yours, and hopefully you will end up having negative biopsy and you won't even need to make this decision. Just maybe keep in mind that unfortunately MRI and mammogram are both not perfect. In my case, DCIS area was way bigger when the actual surgery was performed. In certain patients stage 0 turns to a whole different diagnosis after the surgery.

I said to myself that I will do whatever I have to make sure my kids have me around for long enough.

Beesie

Here's the thing about early detection. While it is obviously better to catch a breast cancer while it is early stage rather than later stage, being early stage does not mean that the cancer might not be aggressive and present a high risk of mets. A 6mm triple negative (ER-/PR-/HER2-) breast cancer is early stage and small, but presents a high enough risk of metastasis that often chemo will be recommended. Chemo will definitely be recommended for even smaller tumors if they are HER2+. And positive nodes can be found even with the smallest of tumors. So a Stage I breast cancer isn't a guarantee of survival and depending on the genetic make up of the cancer, might still require the full range of treatments in order to reduce the risk of metastasis.

And here's the thing about screening. Screening usually can't tell if an area of suspicion is Stage 0 or Stage I (or even higher stage, for that matter). If you are diagnosed with Stage 0 DCIS (let's say you have a biopsy), screening will not be able to tell you if and when that DCIS has evolved to become an invasive cancer - those changes happen initially at a microscopic level, much too small to be detected by mammograms, ultrasounds or even MRIs.

If you have a biopsy, hopefully the result is benign. If the result is DCIS, you can choose to treat it now, while it's non-invasive, possibly with surgery alone, although more treatment will likely be recommended (although chemo is never required for pure DCIS). Or you can choose to wait to treat it, risking that it could develop into a serious life-threatening invasive cancer by the time any changes are screen detected. If the biopsy result is invasive breast cancer, then if the cancer has an aggressive genetic profile, the biopsy will potentially have been life saving, if it allows you to remove and treat the cancer before it has a chance to metastasize.

To MCBaker's point, tinkering with DCIS will not turn it into an invasive cancer. DCIS cells die off in open breast tissue; the cells require a change at the molecular level to become invasive cancer and acquire the ability to survive in breast tissue and spread beyond.

This board - and even the Stage IV forum - is filled with healthy women who had no signs of changes to their breasts, prior to having a biopsy and being diagnosed with breast cancer. How healthy you are and how your breast feels (no noticeable lumps or no changes) has no bearing on whether or not there might be an aggressive breast cancer growing in your breast. The only way to know is with a biopsy.

Salamandra

I was diagnosed at stage 1. I'm now really struggling with the tamoxifen. I just got unlucky - my body doesn't like it. Lots of women have completely tolerable side effects, but not me. But I'm scared to go off of it because I know there's a real chance that cancer escaped my tumor before surgery and is hiding out in my body waiting to metastasize.

The faster you get the cancer out of your body, the less chance it has to do that. If you're one of the unlucky people who could not tolerate tamoxifen, for example, you'd be much safer forgoing it if the cancer was removed at an in situ stage, or even just sooner stage 1.

I would never have guessed that I'd have such a hard time with tamoxifen. In general I'm not a person who gets a ton of side effects from meds. But it is what it is.

Anyway, in the end, the only person who has to live with your decision is you. So you need to do whatever feels right. There are definitely issues with over diagnosis, or more precisely, over detection of false positives.

But I'm just saying... if I had it to do over again and I'd had a chance to catch this in situ, I would take that chance and hug it.

Beesie

brial, to add to my previous post, so that it's not all doom and gloom.

"Would 6 months or a year make so much of a difference that this could be fatal?" Probably not. My guess is that the risk that this could be a fatal delay is maybe about 5%.

Your Radiologist indicated a 25% chance that this is cancer. So right away you have a 75% chance that this is benign and nothing at all will happen if you opt out of having the biopsy.

If you are in the 25% and are diagnosed with either DCIS or invasive cancer, there's probably about a 70% - 80% chance (17.5% - 20% of the 25%) that a 6 month or 1 year delay won't change the long term result, whether favorable or not favorable. The diagnosis could be an non-aggressive cancer that responds well to treatment, with slow growth and a low risk, or it could be an aggressive cancer that has already sent off very stubborn seeds of metastasis (much less chance of this, of course).

So this means there is approximately a 20% - 30% chance (5% - 7.5% of the 25%) that a 6 month or 1 year delay will make a difference in your long term survival, a situation where the cancer might grow and spread during this time to the point of becoming no longer susceptible to treatment. For just having a biopsy, is this a risk you are willing to take?

Those figures are my guess, trying to directly answer the question asked. I'd be interested if anyone else has thoughts on this.

AliceBastable

Last year, I felt the best I have felt in years. Then a mammogram found breast cancer. Then a pre-op CT found a large cancerous tumor on my kidney. Same CT found an aortic aneurysm. I had NO symptoms for any of these, and no palpable lump in my breast. How you think you feel and what your body is actually doing have absolutely jack shit to do with each other. As much as I hate what I've had to go through this past year - and will continue to undergo for a while - some of this stuff I didn't know about could have killed me if undetected much longer. And unless you have a medical degree and years of experience, your doctors DO know more than you do.

teaka123

I have to disagree with the response "in the end, the only person who has to live with your decision is you." No, not when someone is a parent to a 7 and 5 year old as OP indicated. Your children and your partner will also live with your decision.

Brial, I am curious as to the sources of your information when you say -

1. "the more you try to prevent a cancer stage 0 that might never develop in cancer in a lifetime the worst it is"

2. "Patients might have more health problems from tamoxifen and radiation therapy than if the cancer would have going its own course and treated when is stage 1 or 2" and,

3. "disturbing precancerous tissue with a biopsy will make those cells to get out of place that was otherwise considered "in situ".

I have done a fair amount of reading and I have not come across those statements/studies.

I, too, am a healthy person and this past April was diagnosed with DCIS, Stage 0, Grade 3 following my annual mammogram, biopsy followed by MRI. Genetic testing was negative. No symptoms. I never questioned whether or not to go forward with a biopsy, but then again I get my pap smears, colonoscopies, dental checkups and mammograms for the same reason. Preventative Care. So I have the power to do something about it - before it becomes something bigger or scarier that I don't want to deal with. It is also better for me mentally to cope with the known than the unknown.

A week ago yesterday I had a single mastectomy. I will not need radiation or chemo. I do get to make the choice of going flat or what type of reconstruction to have done. I am happy that is the choice I am faced with making.

Be well.

Cowgirl13

I have been on these boards for 10 years and I'll never forget reading about Stage IV women who would give anything in the world to see their children graduate, get married and meet their grandchildren. A lot of them have not been able to be around for this. Think very hard.

exbrnxgrl

Hi,

First of all, please read beesie’s posts carefully. She is not only very good at ferreting out research but explains what much of it means in clear, but not dumbed down, language. Trust me on this one!

This next part is not intended to scare you as I firmly believe you are in charge of your decisions, not doctors. I have had annual mammograms for years, even once had a fine needle aspiration, all were negative. I was 55, great career, happy wonderful adult kids, not overweight, good but not compulsive diet. Though I did not know it at the time of dx, I was to test negative for all currently known mutations (about 34). I was surprised when I got called back, had two types of biopsies, bilateral mx, and then through an unrelated PET scan, a bone met (biopsy confirmed) was found and it was still grade 1.That was just 6 weeks post surgery! Now, I fully realize that my story is an anomaly and far from what one would have expected. My real point is that bc has so many variables and permutations that all kinds of stuff could happen. Everyone has to figure out how much risk they’re willing to accept and commit not to have regrets. In my mind, that’s what bc choices boil down to.

All the best

PS: I would urge you to consider your family, especially your children. That biopsy will let you know what’s going on which might help you make an informed choice about tx. I say informed, not to imply you’re not, but I think there’s a perspective change when you are really going through it.

exbrnxgrl

Hi,

First of all, please read beesie's posts carefully. She is not only very good at ferreting out research but explains what much of it means in clear, but not dumbed down, language. Trust me on this one!

This next part is not intended to scare you as I firmly believe you are in charge of your decisions, not doctors. I have had annual mammograms for years, even once had a fine needle aspiration, all were negative. I was 55, great career, happy wonderful adult kids, not overweight, good but not compulsive diet. Though I did not know it at the time of dx, I was to test negative for all currently known mutations (about 34). I was surprised when I got called back, had two types of biopsies, bilateral mx, and then through an unrelated PET scan, a bone met (biopsy confirmed) was found and it was still grade 1.That was just 6 weeks post surgery! Now, I fully realize that my story is an anomaly and far from what one would have expected. My real point is that bc has so many variables and permutations that all kinds of stuff could happen. Everyone has to figure out how much risk they're willing to accept and commit not to have regrets. In my mind, that's what bc choices boil down to.

All the best

PS: I would urge you to consider your family, especially your children. I say this as a mother, grandmother and first grade teacher.That biopsy will let you know what's going on which might help you make an informed choice about tx. I say informed, not to imply you're not, but I think there's a perspective change when you are really going through it.

gb2115

I didn't read what everyone else posted, just the original post. Having been diagnosed with a tumor at age 38 that was undetectable a year prior, I would not wait. If it ends up being stage 0 then you can refuse treatment if you want to if you consider it overdiagnosis. But if there is any IDC in there waiting could be a mistake. Lots of tumors grow slow, but mine was super fast. I went from a clean mammogram to a 1.2 cm with a positive lymph node in a year. And it was not a biologically aggressive tumor. You just don't know. Biopsies really are not a big deal in the grand scheme of things, and if it's nothing you can just move on.

Also being the mom of two young kids, I wouldn't play around. Again biopsies are pretty routine, to me this is a no brainer, for real.

JoTheGreek

Ahhh, I have no actual insight to offer other than my own state of mind even after a lumpectomy (or excisional biopsy although the surgeon took out a big chunk of my mammary gland and not just the <1 cm lesion detected by all four imaging tools -mammo, u/s, mri, cesm-) and the histology which came back benign, and that is of constant distress especially now that the days of my annual screening tests are approaching... Imagine how I'd have felt if I hadn't even had the lumpectomy... I admire patients who can stand the wait-and-see monitoring in regular intervals but personally I'd be driven mad if I had to go on living with a ticking bomb in my breast for longer than a couple of weeks from initial detection... I'm positive that you'll make the right choice for your case and let's hope that we all here have a peaceful and uneventful summer health wise

Dmoore39

I guess it depends on how comfortable you are with waiting and the what-ifs. Personally, I am an anxiety-ridden person and tend to think the worst. I was 39 when i was diagnosed 2 years ago tomorrow. No family history my kids were 5 and 8. I had a Mammogram and ultrasound right after. The radiologist gave me a birads 5 and did the biopsy that day. It was quick and relatively painless. I knew with birads 5 that was not good news and prepared myself for then definitive results a week later. I had a lumpectomy which removed 2.5 cm IDC but had DCIS at margins so I had a mastectomy. The mastectomy found my breast full of DCIS so I was grateful to have it out. I know your birads is 4 so you have better odds than I did but I wouldn't be able to rest at night not knowing. If you have the biopsy now and it's benign you can move on. Waiting 6 months to figure it out sounds like torture to me. I had a low oncotype so no chemo and mastectomy do no radiation. By 6 months after diagnoses I'd had the mastectomy, started tamoxifen, prophylactic mastectomy (genetic testing which showed the dreaded Variant of Unknown Significance on ATM gene so i chose that due to my age). I felt like the sooner you find out the sooner you can afresh it however needed an move on with life instead of being in limbo.It all comes down to your comfort with the unknown.

santabarbarian

I completely understand your thinking and I share it. I pushed my BS not to take all level one and two lymph nodes (which would have been standard protocol) at my lumpectomy, for the reason of not wanting over-treatment... At my post chemo surgery, I had a sentinel node biopsy instead, and agreed to a second surgery if anything live was found. That may be a mistake or not, but the consequences are mine-- so it's my choice. I decided lymphedema would be a consequence I would so much rather avoid that it was worth a try.

There are so many kinds of cancer. I had a 3.8 cm mass plus a 3 cm lymph node which arose extremely rapidly... grade 3 TNBC... not just between mammograms, it went from nothing to a huge lump & lymph node in about 3 months. If it's a grade 3 cancer, that can happen.

wallycat

I cannot imagine being told I might be harboring cancer and not trying to eradicate it sooner, rather than later. Might it be overkill? Perhaps, but the longer a cancer sits, the worse the treatments may become. Not always, but that is the cancer-world view. Early detection saves lives. If your doctor thinks this is a birad4, I would run to them for the biopsy. Yes, it can still be b-9 because MRIS, much as they are hailed as the greatest thing, do make mistakes. I had an MRI needle guided biopsy because mammograms (since age 40) and ultrasound could not pick up the mass. The MRI said 7mm but the actual tumor was 1.8cm ---and my MRI indicated no cancer. Things happen. Be proactive and don't let this freakin' disease win. For yourself and your family.

InnaB2018

Last January I felt great. I was 45 years old, went to a dermatologist for a regular screening and was diagnosed with melanoma. In March I went to a regular mammogram and was diagnosed with breast cancer. I couldn’t wait to get it out of my system. Can’t imagine what would’ve happened if I didn’t treat either of these cancers. I want to see my grandkids one day. And I want to be present at their graduations. Think very carefully about what to do with your body. You won’t get another one.

4 people I knew from a different cancer forum refused chemo, surgeries and tried to treat themselves with a bunch of cockamamie “protocols”: Badwig protocol, Gerson protocol, raw diet, Kangen water, etc. All 4 are dead now.

What wouldn’t I give to be a stage 0!

happyperidot

Get the biopsy. When it comes back negative you'll be able to tell everyone, "See, I was right. I knew it was nothing." If it comes back positive you'll be able to make your own decisions based on your own real data, not stuff you choose to believe or speculate.

vlnrph

Keep in mind that no one dies of cancer which remains in the breast. It only becomes a death sentence once spread to organs like lung, liver or brain.

If little is known regarding what causes cells to mutate then avoid the body’s ability to recognize and destroy them, even less is understood about the metastatic process.

Early detection may be a laudable goal but, for any specific person, it may or may not save their life.

ksusan

I'm a healthy person and I have absolutely no symthoms or signs/changes in my breast to make me believe that this is a concern.

You get to make your own decisions. I could have written the above sentence, and I was told several times that there was less than 20% chance I had cancer based on the early imaging. As you can see from my profile, this turned out not to be the case.

Beesie

I think we might have scared brial away.

brial, if you are still reading, keep in mind that most of us responding have been diagnosed with invasive breast cancer, and we are reacting from that perspective. There is not one of us here who would not have wished that we'd been diagnosed sooner and had the opportunity to be treated before we had an invasive cancer, and with less severe treatments. We all wish we did not face a lifetime risk of a metastatic recurrence, or already have mets, for those who've posted who are Stage IV.

Based on your imaging, it appears that there is a 75% chance that you do not have breast cancer. I hope that is the case. Good luck to you.

TB90

Brial: It is so easy for us to get so enthusiastic about our own experiences and knowledge gained over time that it is easy to overwhelm a new poster. I must say that there is increasing research or approaches that support your exact fears about over treatment. Others’ experiences support their beliefs. I for one, not only had a mx, but also radiation for pure DCIS. A whole other story. And recently had a total thyroidectomy for a Tirads 5 that was benign. I feel so fortunate to have such good outcomes, but do sometimes wonder if such thorough screening did save my life or would I have died of old age and these procedures deemed unnecessary. But I will never know and must believe that I am one of the luckier ones because diligent health care picked up things early. There is no simple or correct answer for all. So whatever you do, do it for you and your family. We all have differing abilities to accept risk, even financial advisors get that. And just like the stock market, no one can predict the future. The future is about what you can accept and live with. And never feel guilty about your choices. So hope these differing views and scientific reviews do assist you in your decision. But we should support all women’s informed decisions regardless of our own experIences and beliefs. Take care

Meow13

Cancer has nothing to with not being healthy. I had no family history knew 2 great grandmothers. All women on both sides of my family lived to over 90. I was in the best of health. Exercised everyday, bmi of 21, ate healthy, no smoking or alcohol, although I was under stress from my husband otherwise I was in excellent health at 53 years old and 9 years post menopausal.

I might add that I think I am in still relatively good health, even though I have some residual side effects from anastrozole and exemestane.

reflect

I wish my docs had asked me to get an MRI because of my risk factors--same as yours plus a bunch more. My small tumors could not be felt by anyone, and I had 7+ nodes. Good luck, I'm glad you have docs who are proactive, and as always, your body your choice.

brial

Dear sweet ladies,

Thank you so much for all your responses. You did not scared me. Indeed you helped me to go over my fears and do the right thing. Today I met with my radiologist and she showed me the images. The questionable area is big. I’ll definitely go with the biopsy. I don’t want to risk my options. It is a high chance to be benign. I hope it is. I’m praying for the best. But, What can be 2 cm very vascularized? I am very scared. Thank for all you comments. Please all of you stay healthy and continue to guide, comfort and encourage all patients like me with tons of worries and questions. I’ll keep you updated. Monday, June 19 I have my biopsy. Hugs to all of you

Meow13

I hope you get good news.

teaka123

Brial, May good news come your way. I recently joined this site. I welcome the passion, support, experience and knowledge of all the posters here. More than anything we all want the very best for each other.

ItsHandled444

Brial, I have been watching this thread and honestly was hoping you would get the biopsy. Hoping for good news, Hugs!