I know I need to let this go.....

mom3band1g,

You did the right thing. I now have to deal with the DCIS again. I could say "I don't want to do anything, after 17 years. But I do not have children. I feel I can take the risk. I understand from several sources and a lady who did volunteer work where I work, it is not a pleasant experience when there is no more you can do to stop the spread. You took the right path to stop any further risk. 

I threw this out there, my story, because I am a skeptic. I was lucky. Now, I'm not sure the path I'll take, I may do what you did, just to get the monkey off my back. But I'm always pondering the idea, cancer can grow in any cell, anywhere. Cancer is simply a misbehaving cell gone wild. I could potentially have cancer in my thyroid, in my bladder, in my stomach. I am going for an ultrsound on my thyroid next week, I have a lump there. Wouldn't that be something. And thyroid surgery really stinks. I may just say, forget it, let it take me. I honestly don't know.

Please have the confidence that you did the right thing, you did. I am praying for you.

Ah, this is why I believe that eventually, once we can determine which types of DCIS are low risk and which are high risk, DCIS should be broken into two different diseases.  The type of diagnosis that you had is breast cancer. I doubt that any of the 'experts' who suggest that DCIS should be downgraded to a pre-cancer would say that your diagnosis was not cancer, and more importantly, I'm 100% certain that every one of those doctors would tell you that your diagnosis had to be treated just like any other aggressive early stage breast cancer.  Let's face it. With 6cm of high grade DCIS, you are very lucky that some IDC wasn't found.  The risk of that was much greater than the possibility that your DCIS might remain dormant for an extended period of time.

Low grade low risk DCIS is a completely different disease.  It's not what you had.

Julie E,

You did not have half or all of your thyroid removed? A lady here in town has a really raspy voice and big problems with soreness. Then someone else had an artery pop after she came home from surgery. I just keep thinking it's the neck area where a boatload of things could go wrong. I'm not getting it done here in town if I have to do it. I'm going where the surgeon does 10 a day and that's all he does lol. I'm not kidding, my beautiful black lab passed away 4 weeks ago, then I get this call from my doc "you have DCIS" then I have to go for the thyroid ultrasound...they say it comes it 3's, hope that's all for now. Julie, do you take thyroid meds?

rianne2580-

My thyroidectomy was not a result of abnormal thyroid levels. I went to my primary doctor because I was hoarse for a month or so. He said I will send you to an ENT for your hoarseness, but also to an endocrinologist for your thyroid nodule which I can see just looking at you, I had not noticed or felt it. I went to the endocrinologist first. She performed a needle biopsy which caused that lobe of the thyroid to swell, giving me a wicked sore throat - but causing the thyroid to shift in my neck and I wasn't hoarse anymore!!!! - it must have been pressing on my voice box (medical term!) . the thyroid is two-lobed, left and right in front of your neck. I was left with one lobe. It was explained to me that having had a nodule, I was likely to get another one in the remaining thyroid lobe, to prevent that, I  take levothyroxine - to produce all the thyroid hormone I need, causing the other lobe to atrophy.  I get my thyroid levels checked every year and haven't had to chang my dosage in 21 years. 

you are right to go to a surgeon who specializes, there are indeed alot of things going on in our necks!  but so far so good for me, and again, I hope your experience is similar. And I am so sorry about your dog. 

Julie E

Mom3, I've driven myself insane over and over again for months now. Because of past experiences with unusual medical situations, I know that medicine doesn't always get it right, or changes treatment methods. And I've wondered how I will feel if, in a few years, they start to say, Oh, we have much different ways of treating DCIS now. (Ways that don't involve quite as much surgery as I am about to have.) 

And all I can say at the moment is, I feel I am at the absolute limit of what is knowable. It's very frustrating. I am not completely convinced that all grade 3 DCIS is on the brink of turning invasive. I am not completely convinced that all DCIS will eventually find some way of transforming into invasive cancer. Maybe it's just part of what happens to cells as they age. But I'm also not completely convinced that I'm safe doing nothing, or leaving the microscopic bits in there.

I do feel pretty furious that all that ever showed up on a mammogram was  two discrete areas of DCIS that indicated lumpectomy + rads as reasonable treatment. I think the imagining is completely inadequate. But that's another issue. 

I have kids, and people who need me, and I can't gamble that all will be well if I do nothing. And if they tell me to have rads after the mx (huge bummer) I will most likely do that too. Because I'm looking down X number of years and asking myself how I"ll feel if something bad pops up and I didn't do those things. And the answer is, Mighty pissed at myself.

I don't know if this will make you feel better, but from everything I've read, a palpable lump really does require attention. I think you did the right thing, and I wish you all the best wishes for recovering and feeling good about your treatment. 

This is otter, slowing down for a drive-by comment ...

I just wanted to say this is a fantastic thread.  The information here -- in all the posts -- is clear, helpful, and well thought-out.  I wish all the BCO threads on seemingly controversial subjects could be this informative.

For mom3band1g:  You had to make a terrible choice, based on what we all agree was too little information.  We all have to do that at one point or another.  To help yourself get through the second-guessing, you could think of this:

You had a huge mass of abnormal ("neoplastic") tissue in that breast.  The mass was there because an on-off switch in one previously normal duct epithelial cell was short-circuited, and the growth (proliferation) of that cell and its progeny could no longer be controlled.

All it would have taken is one more short-circuit of a different switch in one of those DCIS cells, for the growth of the abnomal cells to no longer be "in-situ". The difference between DCIS and IDC is the ability of the cells to break through the basement membrane of the duct epithelium and spread into the surrounding breast tissue.  One cell figuring out how to do that (one cell acquiring the relevant mutation(s) in its DNA) would turn your DCIS into invasive ductal carcinoma.  It would start out as a "microinvasion", but that's only because it's too small -- too few cells -- at first, to be seen without a microscope.

I've made the scenario a bit more simplistic than it really is.  (Beesie could tell you there is more involved than just squeezing through the basement membrane; and the steps involved in the transition from DCIS to IDC haven't been clearly defined yet.)  But, with all the millions of abnormal, rapidly-growing cells in that mass, it's not hard to imagine one of them getting lucky.

Hugs...

otter

mom3band1g

as someone noted, its a crappy decision to have to make especially when you have people telling you how its not really cancer and the like.  I know I had a woman in my office who was treated for DCIS ten plus years ago telling me it wasn't even cancer. . . .I wanted to punch her.

Although I didn't end up with a mastectomy, I still went down that road because my boobies are just not that big and I was told there was a high chance that a lumpectomy would be so disfiguring that a mastectomy would be better.  In fact, I went into the lumpectomy with the surgeon having told me that if the margins were not good, I would be better off with a mastectomy.  One thing that helped that as I went through the deciding process, I met with my oncologist BEFORE surgery. She looked at my pathology report from the first biopsy and said flattly that with my type of DCIS, it was not a question of if it would become invasive but when it became invasive.  When I was preparing myself for the idea that I might need a mastectomy [when I was at the stand in the shower look down and try not to see a boobie stage]  just reminded myself that I have a 10.5 year old thinking of becoming a surgeon and a 13 who wants to sail around the world and a 9 year old who wants to be a superhero and damn it, I want to be there to see it all. 

There are no crystel balls.  You made the best decision you could make for you.   Many hugs.

Dear Mom3band1g and Kitchenwitch,

This is a complicated thread to read, because I remember that we all started about the same time.  I am so sorry that you are both still going through choices and anxiety.  I realize I had the easiest path because I had the option of lumpectomy and radiation.  But I also remember, Kathy, how scared we were when this began.  Honestly,remembering you writing when you were still waiting for the results, and remembering what your surgeon said, and knowing you are young and have small children, I don't see that you had much of a choice.  If you had not had the mastectomy, you would instead of worrying about whether it was too much, be worrying about whether your extensive high-grade DCIS had become invasive. I know it would make it all feel more reasonable if you knew for sure what the future would have held, either way, but given that we don't have that option, it seems to me you did what had to do.  Kitchenwitch, I think it sucks that you have gone through everything and are now looking at mastectomy.  But at least you do know that you did whatever you could and you are making a careful and informed decision.  If we had all been diagnosed 10 years from now, maybe we would have had easier decisions.  But we have to work within the context of now. Sending hugs and really good wishes.

 d 

You are not crazy. I wish sometimes I had never had the mammo etc. I wish for by life back. I hate that everytime my back hurts I worry it is cancer back to invade my body. I feel I am looking in the rear view mirror to make sure IT is not coming back.

We all make the choices we feel are "right" for us. My post-op path report found DCIS in other parts of my breast that did not show up on mammo or MRI. So I would have been back later.