Is it possible they made a mistake?
Has anyone had a biopsly come up false- positive? I am having such a hard time with this. I am really wondering if there was a mistake. I also keep reading how DCIS isn't really cancer ...then why is it treated like cancer? Would it be horrible to take a wait and watch approach provided I changed my diet? I actually eat pretty well and we are about 90% organic but I could def make some improvements and do some research in that area. I feel fine so how can I have something wrong with me? Before kids I was a ballet dancer...my body means a lot to me. I have had 3 miscarriages, 1 preemie, and 3 full-term babies. Breastfeeding was the one thing I could do and do really well! How could my breast betray me? I just can't really wrap my head around this. Could it be a mistake? I probably sound silly and dramatic and I am sorry. I feel guilty for feeling sad about this as "it's not really cancer".....and yet I feel sad. Sorry, I didn't want to unload all of this on my husband. Just venting.
Comments
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You can ask for another pathologist somewhere else to read the slides. It is possible you would get a different opinion.
As for DCIS being cancer -- when normal cells become invasive cancer the cells undergo several changes. One is that the cells proliferate uncontrollably. DCIS cells do that. Another one is that the cells invade other structures. Purely DCIS cells do not do that. DCIS is called various names by different people -- non-invasive cancer, pre-invasive cancer, pre-cancer, precursor to cancer ....probably more.
Take some time to make sure you have doctors you are comfortable with and ask questions. Take things one step at a time. You can figure it out.
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I have widespread DCIS (meaning lots of those tiny dot concentrations) in my right breast and am undergoing a mastectomy on Feb.10th. I've had since mid-December to come to terms with this horrifying news, and yet it remains difficult to accept because of what you're saying--because DCIS isn't life-threatening. If we let this go, it's possible that I could live through my 80's and kick the bucket from some other cause, that the DCIS wouldn't amount to anything. But--as both my first and second opinion breast surgeons have told me (at 2 different hospitals in NYC)--we just can't take that chance. In fact, an additional biopsy showed that I actually have a "micro-invasion" of bad cells beyond the duct. Both surgeons said the same thing: the only solution is a mastectomy. It's a tough pill to swallow. I'm losing a breast, and down the road it may be something else which kills me! And incidentally, I'm in my late 30's, in good shape, feel great, plenty of energy to handle my 2 young kids. This threw me for a loop, too. Hopefully, you'll be able to have a lumpectomy. Take care...
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Thanks for your responses...and not 'yelling' at me. I have an appt with my surgeon tomorrow and hope that helps me. I really don't get the 'it's not really cancer' comments. If it's not cancer why are women losing their breasts? Why do we need radiation? It doesn't make a lot of sense to me. I think I'm just having a 'down' day. Thanks for listening.
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Hugs to you, mom3band1g, I think quite a few of us can relate to your feelings. You won't get anyone here "yelling" at you -- "yelling" WITH you, now that's a different story!
One area in particular I can relate with you on is that feeling that "I don't FEEL sick, so how can this tumor really be anything?!" All my friends have gotten very sad-faced of late, and they ask me in this heavy voice, "How are you feeling. . .?"
Well, physically I feel no different than I did before I found the lump. I wasn't "sick" before, and I'm not "sick" now. So it really kind of bugs me that they expect me to be, I dunno, bed ridden or something.I don't know if there is such a thing as a "false positive" on the actual lab results/pathology reports. On the mammograms and MRIs and ultrasounds, I'll give you that. But when they've actualy examined the cells, I don't know how that works, but it wouldn't hurt to get it checked out by someone else, too.
If you are still unsettled, like someone mentioned, take all the time you need to take your pathology report, or have your biopsy sent to, another doctor for additional review.
I'm sure your doctor can talk you down on this one in terms of whether it is or is not actually cancer, and why they offer the aggressive treatments for it.
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Wow, I could have posted your post. I am mother of 3, ex-ballet dancer who has also been diagnosed with DCIS too. Feeling in shock and "How could this be me?" I breastfed like a champ, I eat healthily, maintain a normal weight and I exercise with abandon. It definitely feels like a betrayal on the part of my breasts. I intend to stamp this monster out so I can embrace my life. I have had many moments of wonder and awe today (first day of diagnosis), and I can't help but wonder what the cause of this awful disease is..... with no family history and my lifestyle, I can't put a finger on it.
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Mom, sorry you have to go through all of this. You have done nothing wrong in your life to deserve this, it is unfortunately a bit of bad luck. DCIS is cancer, it is cancer in situ, so lucky for us, it hasn't broken out of the ducts and invaded the rest of the breast. So like LTK wrote, we can leave DCIS alone as it could take years to break through the ducts or it could invade the rest of the breast anytime. Problem is there is no test or method of knowing if and when it will invade. Therefore that is why the medical field tends to be aggressive and treat DCIS. It is treatable and doable, it isn't great that we end up with lumpectomies or mastectomies but we are strong and we can do this. I was diagnosed Sept 08, two lumpectomies, rads, and full hysterectomy since then. Now, I am doing great! You will too, just take it one day at a time. There will be rough patches and lots of emotions to deal with, but you can do it.
As for more information, try to find Beesie's comments. She has had DCIS to and is a research fanatic. Her information is amazing and helpful.
So Mom and LTK, be kind to yourselves. We are all here for support so lean on us when you need to. Ask your questions and use the private message to send private messages to your fellow sisters if you want to ask questions but don't want everyone to read it. We are here to help.
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Mom3, I think I understand how you're feeling about the "why do they treat it like cancer when it's NOT cancer?" (Can't speak to possibility of the false positive.) It's unfortunate that at this time they really can't predict with absolute certainty whose DCIS is going to progress and whose is not. People with very low grade (grade 1) DCIS, where the cells are not that different from typical cells may have a better shot at staying healthy; but the higher the grade, the weirder the cells: the more like cancer cells they are.
It is considered a marker for cancer, according to what I've read. Since my diagnosis in November just after Thanksgiving I've come to accept that treatment (lumpectomy and radiation) is the best way to manage what could well turn into something much less manageable. My grade is between medium and high, so I feel this is the right course.
I fought the idea of radiation for a while ("it's not cancer, so why treat it?") but it really does seem to drop the recurrence rate. And because I might have a blood clotting problem, I may not be able to take tamoxifen.
Your body didn't let you down! It sounds like you've taken wonderful care of it, eating well and breast feeding your children. I hope you'll come to some peace with a good course of action. (I have a preemie too!)
Vent all you like.... it's no fun to be told you have something that requires significant treatment.
Best wishes.
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Mom3/Kitchenwitch: I think coping with this news is a lot like grieving and it is good to let yourself feel it. It throws up a lot of stuff you thought you might have put to rest. Ten years ago I had a preemie too - she was born at 25 weeks. She lived for 9 weeks and then she died from NEC. I tortured myself because I had pumped my breasts religiously and had been told that Maia's chances of getting NEC were practically nil because she was fed with breast milk. It took me a long time to truly believe that my milk did not kill my baby. Now that I have high grade DCIS, it feels like another terrible betrayal, but as that feeling subsides, I realise I feel kinder towards my body now than I did then. I feel that my DCIS is a freak of nature - and nature can be very cruel, can't it? There is no reason why we need to blame ourselves - you could torture yourself forever with that. We've done nothing wrong to or with our bodies. Sometimes things just happen - like my daughter dying - and we have to deal with that. Allowing ourselves to grieve and feel the ups and the downs is important in coming to terms with our lot. There is no right way or wrong way to deal with this. But you do need lots of love and support around you - here's some! xxxx
(Incidentally - kitchenwitch, I have a blood clotting disorder too - I have factor V leiden and anti-phospholipid syndrome, so I suspect this means I will not be able to take tamoxifen either.)
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Thank you so much, all of you. Just listening and relating has made me feel better. Feel like I am not crazy. I am tired and did not sleep well last night so I won't even try to really respond beyond 'thank you'. I have my appt with the surgeon and a whole list of questions. thanks.
kathy
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Yes, there are false positives on pathology - I think it's about 5% - where what was called DCIS is really ADH and vice versa. I suppose the line between when a cell is an ADH cell and when it's changed enough to be called a DCIS cell is, to a certain extent, difficult to discern and arbitrary.
You can absolutely have your slides, as well as everything else in your case, get a second opinion (or more, if necessary). I had to make sure I really had what they were telling me I had, but everyone agrees on my slides so I guess I really do have DCIS, dammit.
Not sleeping is normal when you've just received this news.
Best wishes to you.
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If you feel you would be able to accept your diagnosis more easily, then definitely request that your slides be read by a different pathologist, preferably in a different lab.
As far as the feelings of betrayal - I still feel those, 15 months after my diagnosis. I also was a dancer, and I breastfed all 6 of my children for an extended period of time. Accepting myself was one of the more difficult parts of this journey.
I have a friend with Stage IV bc who is a La Leche League leader. She has a blog and spoke abut this issue of feelings of betrayal in it.The blog is at coffeeandchemo.blogspot.com, and look for the post "Betrayed By My Breasts".
Leah
P.S. She is a member of these boards and has posted the link to her blog here so I know it's OK that I gave you the link now.
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If the cancer-not-cancer thing bothers you just think of it simply. You have some spots that may turn into a cancer that will threaten your life so they need to be removed.
You can dance the probabilities of whether they actually will turn into something life-threatening all over the stage. There are plenty of women on the Stage IV board who would trade places with you in a heartbeat.
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mom3band1g, could your biopsy result be a mistake? Yes, it's possible but it's unlikely. ADH, DCIS and small amounts of invasive cancer all look alike under the microscope and if the sample is too tiny, it may be difficult to tell them apart. But usually in those cases, if there is doubt, the sample will be sent to be reread by a different pathologist or different lab, or you will be sent for another biopsy, in order to retrieve a larger sample. So if neither of those things happened, chances are that the biopsy is correct. But, as Leah suggested, you can request that your slides be reread or you can send them to another facility to have them read there.
As for what caused this, and how it could happen to you, keep in mind that 1 in every 8 women will get breast cancer (and yes, DCIS is breast cancer, just at the earliest stage) and most did nothing to cause it. It just happens, even to women who did everything "right".
As for whether DCIS is cancer, yes, DCIS cells are cancer cells. What makes DCIS cancer cells different than invasive breast cancer cells is that:
1) DCIS cancer cells are confined to the milk ducts. Since milk ducts exist only within the breast, DCIS cancer cells are totally confined to the breast and cannot travel outside of the breast. This means that DCIS breast cancer may take your breast but it cannot take your life - it is only when breast cancer cells move outside of the breast (through the lymph nodes or vascular system) and take hold in a vital organ that breast cancer can become fatal. DCIS cancer cells are held in the ducts and cannot move outside of the breast.
2) DCIS cancer cells require one last biological change to enable them to break through the milk duct. Medical science does not know yet what causes this change to happen and therefore cannot predict when it will happen - that's the big dilemna with DCIS. But as soon as a DCIS cancer cell undergoes this one last biological change, it can break it's way out of the milk duct and at that point, it is no longer considered a DCIS cancer cell but is now an invasive cancer cell. It's the exact same cell, but as soon as it's outside the duct, it has the ability to move through the breast tissue and find it's way into the lymph nodes and/or the bloodstream and from there, move outside of the breast. So as soon as the cell breaks through the duct, it has become dangerous and life-threatening.
Because DCIS cancer cells cannot move outside of the breast, and because they need this one last biological change in order to become invasive, some in the medical and scientific community choose to call DCIS a pre-cancer. But this is really not correct, since DCIS is more than just a marker for a possible cancer; it's the DCIS cells themselves that evolve to become the invasive cancer. So the more correct term is to call DCIS a pre-invasive cancer. DCIS cells are cancer cells, but they have been caught at the pre-invasive stage. From a treatment standpoint, it seems to me that it's a whole lot safer to get these cells out of your breast while they are still at the pre-invasive stage.
This drawing from breastcancer.org. might help explain the relationship between ADH and DCIS and invasive cancer:
http://www.breastcancer.org/pictures/types/dcis/dcis_range.jsp
And here are a few threads from this discussion board that might be helpful as you try to understand more about DCIS:
http://community.breastcancer.org/forum/68/topic/696681?page=5#post_1535388 Please Stop Minimizing My Diagnosis
http://community.breastcancer.org/forum/68/topic/746595?page=1#post_1677917 Should I Feel Lucky?
http://community.breastcancer.org/forum/68/topic/747279?page=1#post_1689856 Is DCIS Cancer?
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For what its worth, you certainly aren't alone in your feelings about DCIS.
I have found it helps me to think of my DCIS as being a lot like thyroid cancer---probably because I first had that scare since I was in my 20s and have had 25 years to get my brain around it.
Thyroid cancer is confined to the thyroid. If you remove your thyroid, you have removed the cancer. End of story except for a lifetime of meds. But if you don't remove the thyroid, eventually, the cancer can move to other places and you can die from it.
DCIS is cancer in the ducts of the breast. If all it did was stay in the ducts, well who would care? Nobody right? Because unlike thyroid cancer, DCIS that stayed in the ducts wouldn't mess with your endocrine levels or get giant size and prevent you from swallowing or make a gigantic lump in your throat that hinders movement. But unlike thyroid cancer, DCIS seems to be more likely to change into something else and leave its happy home in your breast. And that means, leaving in the breast is risky. So we are told to remove the breast and remove the cancer because someday it might move out of the ducts and all over your body. And at this stage of the game, there is no way to predict that someone's DCIS will stay happily in your ducts forever or move around. So the best course of business is to remove the cancer.
what I find most aggrevating about the situation is that so many decisions are required of us based on incomplete knowledge. Lumpectomy or mastectomy decisions are supposed to be made when you don't even know where you end up on the risk scale because you can't know until the post surgical pathology.
grrrrrrrrrrrrrr....................
hang in there---its not like you are alone. sigh.
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I felt exactly like you. I felt fine, in fact, better than I felt in the previous 5-6 years. Good and healthy diet, exercise, ex-gymnast. One mammogram showed all of a sudden micro-calcifications spread all over the breast. I went through the same thing. I had the pathology repeated. I decided for bilateral mx - the MRI showed some "suspicious" area on the left breast too. And guess what? The left breast was full of ADH. On the right, it wasn't only DCIS - but LCIS, ILC, IDC, ICC. All very small - the largest one was 4 mm (that was theone I felt as a tiny lump) but they consider the total size of the area of the micro-tumors as one tumor and I got the stage IIb diagnosis.
I know you feel betrayed, i know you can't believe - but don't risk your life.
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Beesie, that is the most awesome and understandable description of DCIS and similar cancers that I have ever read. There is a young Hispanic woman on the board who is trying to get an understanding of the Atypical Hyperplasia diagnosis on her mother's pathology report. The above information would help her tremendously.
I would like to make one more comment about feeling angry that our bodies "betrayed" us after we have taken such good care of them. I admit that there are times I have those same thoughts. Especially years ago after I was diagnosed with diabetes. But. . . the way I prefer to address it now, when my head is thinking logically, is that my body, in fact, has done a damn good job of protecting me against the variety of things in our enviornment that can damage us. Unfortunately, some elements in our environment are pretty nasty combatants. Think of it this way, think how much damage might have been done had your body not been as vigilant as you could possibly have made it?
Be kind to your body, it's fought hard against the ravages in our environment to keep the damaging forces at bay. Now it just needs a helping hand from medicine and technology, that's all.
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Mom3 - In the beginning of my journey, I was diagnosed with DCIS (they did say it WAS cancer -- and it IS cancer.. it's just not invasive)...but the biopsy failed to find two things that my first lumpectomy DID find: it was invasive... and I was HER2 positive. If I had stopped and taken a wait and see approach at the DCIS diagnosis, I would be much worse than Stage 2 (I believe). Once they found that it was invasive (biopsies are notorious for missing invasiveness, I was told, by as much as 50% of the time)... I had another lumpectomy and SNB and had 1 node positive. My cancer was high grade.
Your pathology may be very different... but I will say this: my first lumpectomy was easy. Had it stopped there -- had it really been JUST DCIS -- all I would have had was a small mark on my breast like a scratch (that would have healed) and no change to the shape of it. In other words, it's an easy thing to survive with little or no scarring. So consider removing the affected area for further testing and info (at the very least).
I ultimately had a unilateral MX (much testing of my other, healthy breast showed no reason to take it) and chemo. Am on Herceptin now. I was spared radiation because I had the MX.
The good news is that you caught this early! Good luck with the surgeon. It's definitely a huge learning curve and often the information avalanche can be overwhelming. This site is the best thing for venting, getting information / questions to take back to your doctors, and just downright group support
Lilah
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thank you all so much for your very well thought out responses. I met with my surgeon yesterday and am feeling a lot better about the whole thing. My DCIS is high grade. I have surgery scheduled for Feb 10. I know we won't know for sure until she gets in there and takes it out. She did say mine was a bit unusual in that it is palpable and does not show up on Mammo or ultrasound. She is going to have to remove it my touch/feel. I may have to go back a 2nd time to get clean margins. I also asked her about why some people say it isn't cancer and she said "only Susal Love' feels that way. She explained, just like you all, that it is cancer it just isn't invasive. Again, I was really feeling down when I originally posted and thank you all for not being offended and offering your support.
Today is another day and I feel better. I do have cancer but we can get rid of it! I know I am 'lucky' in this.
LeahS - I was very involved with LLL when my first 3 were little. LLL was so amazing and such a great place for me when my boys were little. I will look at your friends blog.
I would love to 'speak' to each one of you who responded to me! But just know I thank you all very much and you helped me in a low point.
I am just starting this journey and I know i have a lot to learn.
thanks.
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Mom3 -- sounds like you have a great surgeon and you are in great hands! Good luck and glad you are feeling better about it all.
Lilah
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