I've had DCIS for 17 years

rianne2580

In 1994 I was diagnosed with DCIS and LCIS. The oncologist and surgeon at the time suggested a double mastectomy. We were in the process of moving to Chicago, so I brought all my records to a recommended surgeon downtown. He suggested no such surgery and said we will watch the condition. In 1997, I had a complete hysterectomy and ovaries removed due to endometriosis and tumored ovaries. No cancer there. Now, I have no estrogen, and lost 75 lbs. 2 weeks ago the mammogram showed a suspicious area and a needle biopsy was done. I am faced with DCIS, which I knew I had. I'm sure they will want to do surgery and radiation or a mastectomy. I feel like just saying no. I have nothing to feed a cancer as my bones are suffering from loss of estrogen. I'm very fit and exercize often. Has anyone opted out of treatment for DCIS?

mom3band1g

What grade was/is your DCIS?    How amazing that you have had it for 17 yrs and it hasn't really changed or 'done' anything!  Wow!

kittymama

17 years!  That is amazing.   

Because I'm quite new to the process, I don't have that much insight.  However, maybe you could get the DCIS surgically removed to ensure that there is no invasive component.  I've read that about 15-20% of needle biopsied diagnoses of DCIS have an invasive component, though the invasive part is usually small.

rianne2580

This originated in St. Louis, they have excellent doctors and hospitals there. I had a benign lump removed that was soft and movable. But the margins were full of DCIS and LCIS back in 1994. They could not get a clean margin. So they were talking about reconstructive surgery after the double mastectomy. Very quickly after that my husband got a job offer in Chicago and we moved. Somehow I was not scared of this diagnosis. I was on the phone to 1-800 4Cancer alot. They were so helpful and sent me mounds and mounds of research and study results. We did not have a computer. All I did was read about breast cancer. Then a surgeon in the heart of Chicago came highly recommended. He was so sure this could be watched. It started to be difficult to get downtown so often, so he guided me to Loyola University Medical Center and Sheryl Gabram, who was awesome.

Now all these years later, it surfaces again as mammograms pick up DCIS. I'm going back to Loyola, where all my old records are and sent all my records from here.  I guess we'll see what happens.

kittymama

hi rianne,

Just to clarify, you did not have a double masectomy?  Was this your first mammo that picked up the DCIS?    

I'm not sure that for 17 years I could have been as calm as you.  But, it's somewhat reassuring to know that for some people, DCIS can remain in their breast for years without causing problems.  

Lilah

It depends on the kind of cancer the DCIS is made of -- mine, for example, was neither ER nor PR positive and a lumpectomy found that what appeared to be DCIS was in fact invasive and HER2+ (which has nothing to do with estrogen and progesterone).  If you have not had a biopsy, you should, if only to find out (if you can) what kind of BC it is; a lumpectomy might also be in order (as opposed to a mastectomy) for better info.  If the area of DCIS is small enough a biopsy that is done surgically (rather than a needle biopsy for example) might not only give you the info but also remove the area of DCIS (and preclude the need for a lumpectomy).

rianne2580

Kittymama,

I did not have a double masectomy, nor radiation. This all started with that annoying lump I had. I was not even thinking about breast cancer when I went in to have it removed. It was so pliable and soft, but the size of a walnut. You have to remember, breast cancer was not very talked about back then. When the surgeon removed it he found the DCIS and LCIS in the margins of the lump. He went back in Jan. 1995 (one month later) and could not find healthy margins.  Honestly, I was so not worried about it, not sure why. I guess I should have been. I'm 53 now and worry more about my bone health, trying to run as much as possible and gobble calcium constantly. I eat really healthy, so that's why this is pissing me off. I 

CrunchyPoodleMama

Rianne, what I'm about to say is NOT standard-of-care, nor is it the choice that the vast majority of women would make, but I'm simply telling you what I would do.

If I had low- or medium-grade DCIS and had absolutely no chance of being pregnant in the future, I would leave it and monitor it and take iodine every day for the rest of my life. So basically, I would pretty much do what you did (I'm assuming you did not become pregnant after your diagnosis?). And if your DCIS has not changed/spread into more ducts in 17 years, I'd be inclined not to treat any further at this point, either, since it appears to be stable.

For me, though, I do plan to be pregnant (I'm in my 30's), and two surgeries were not able to get clear margins, so I am going to have a skin-sparing mastectomy with reconstruction. With (hopefully) a future pregnancy, I absolutely can't accept the risk of pregnancy hormones causing my DCIS to grow and possibly turn invasive. But if I were 53 with very little estrogen, I'd probably opt out of the mastectomy.

Best wishes to you... and would it be weird to say "congratulations" for having your DCIS stay stable for so long??!

Beesie

Rianne, I'm glad that you've posted, because your situation is an excellent example of why every diagnosis of DCIS needs to be evaluated individually.  DCIS is a very diverse, heterogeneous disease.

In my case, I had over 7cm of high grade DCIS with comedonecrosis.  My initial needle biopsy only showed ADH.  If my doctor had not insisted that I have a surgical biopsy, I would have happily gone on my way. That was 5 years ago and if I'd done nothing over these 5 years, there's almost no doubt that I would have advanced breast cancer by now.  This is because when I had the surgical biopsy it showed that in addition to the ADH, I also had a lot of high grade DCIS and my DCIS had already started to become invasive - a microinvasion of IDC was found.  So my case sits on one end of the DCIS scale (actually I'm off the scale because officially my diagnosis is Stage I because of the microinvasion, rather than Stage 0 DCIS).

Your case sits on the other end of the scale.  Studies have shown that in cases where there is a small amount of low grade DCIS, it's very possible the cancer cells might not become invasive for 15 or 20 years or more.  So situations like yours have certainly been seen before.  Do you know more about your original diagnosis, specifically, what the grade of your DCIS was?  As for how much DCIS you had (that was not removed), were any estimates given to you at the time?  I'm thinking that although DCIS was found in the margins after your benign lump was removed, it could well be that there was no more DCIS in your breast, or possibly there was only a tiny amount.  I had dirty margins on all sides after my excisional biopsy; my surgeon told me that this could mean that my breast was full of DCIS, or it could mean that the surgical knife cut right at the edge of the DCIS and there was no in fact no more DCIS in my breast.  In my case it turns out that my breast was full of DCIS.  Based on what's happened to you over the past 17 years, I'm guessing that here again you fall on the other side of the scale.

So to your question, has anyone opted out of treatment for DCIS?  Yes, I can recall a couple of women who've come through these boards over 5 years who've decided to do nothing, but these were women who've had very tiny amounts of low grade DCIS. Most women with this type of low risk diagnosis will at least surgically remove the DCIS and then possibly forgo any other treatments.  The risk with this type of treatment, for those with tiny amounts of low grade DCIS, is in most cases relatively low, at least over the short term (as your example shows). But for someone who has intermediate grade or high grade DCIS, or if there is comedonecrosis present, or if the area of DCIS is large, then there is a greater likelihood that some invasive cancer might already be present (as in my case) or that the DCIS will convert to become invasive within a relatively short time period.  In those types of cases, it would be very risky to do nothing.

The difference between your experience with DCIS and my experience with DCIS points out so clearly that it is possible to over-react to a diagnosis of low risk DCIS, but it is also possible to under-react to a diagnosis of high risk DCIS.  This is why DCIS treatment in every case should be determined based on the specifics of that case, not based on what someone else did or what happened to someone else.  Nor should the treatment decision be based simply on fear (since there might in fact be very little to fear) or on lack of concern (because DCIS is 'only' a pre-invasive a cancer).  

rianne2580

Hi Beesie,

I'm sort of obsessed with this blog now. You say many interesting things that had not occurred to me until now. Loyola has the records and I now know what to ask. I will share this after I meet with the surgeon and find out details I never considered. I do know it is estrogen positive. And you are right, every case is different. My husband works with a woman with 2 small children that did not think twice and had a double mast. She had only DCIS, he didn't ask her the specifics. I could not have children, so that was never considered. 

 The more I think about this, I realize for me, it's just skin. I won't ever have to breast feed. I thank God it's not my liver or pancreas or brain. If I have to get them lobbed off, so be it.  Loyola is medical university and all the docs are professors and very involved in research. I'm not looking for the "standard procedure" which is what I would have gotten in my town. My heart goes out to each and every person facing this disease. 

Beesie

Rainne, finding out the specifics of your DCIS is really important.  I think it's a shame that all DCIS is lumped together as one disease, when in fact the variations between one diagnosis and another can be so great.  I've been reading up on DCIS for 5 years now and I've read hundreds of articles and studies.  The only conclusion I can come to at this point is that there's still an awful lot that medical science doesn't know or understand about DCIS! 

Still, there have been advances in knowledge since you were first diagnosed.  There certainly is a better understanding that not all DCIS is alike - some is very low risk and some is very high risk.  And there is a much better understanding that in most cases, a mastectomy is not necessary. If a lumpectomy is done and the area of DCIS can be removed with reasonable margins, then there is no reason - strictly from a medical standpoint - to do a mastectomy.  I don't think that a lumpectomy would have been the accepted standard 17 years ago. Certainly there is a good understanding that there is no reason to do a bilateral mastectomy, since DCIS cannot travel from one breast to the other (invasive cancer rarely ever does this either).  In your case, the more compelling reason for the recommendation to have a bilateral might have been the LCIS.  Although LCIS is no longer classified as "breast cancer" by most experts (this is a change just over the past 5 years), it is considered to be a marker for the possible future development of breast cancer in either breast. 

For someone diagnosed with breast cancer, it's a whole lot better to be diagnosed with DCIS than with invasive breast cancer, and particularly, more advanced invasive breast cancer.  But DCIS is a can of worms that comes with it's own unique problems and confusions.

Lilah

Beesie - indeed very interesting and worthy points.  My original needle biopsy DID show high grade and comedonecrosis... since I went ahead without question to lumpectomy no one warned me that this might be an indicator of IDC, but sure enough IDC is what I had.  A second lumpectomy left me with one margin still too close and so I opted for a unilateral MX on the theory that my cancer was like tiny grains of sand (and because after two lumpectomies my remaining breast tissue on that side looked like a bite had been taken out of me so plastic surgery was in my future regardless).  As it happens in MY case the final path on the removed breast tissue was NED.  However, I waited to do that MX till after chemo, so there is no telling whether it was the chemo that took out what may have remained or whether the second lumpectomy had, in fact, gotten it all.  It's not an exact science... but an educated guess science... which is why you are right to advise that rianne get all the facts she can! 

lago

rianne2580 if you do decide to go for a 2nd opinion both University of Chicago Medical Center and Northwestern are designated NCI cancer centers. That's not to say Loyola isn't good. I'm at Rush and very pleased but they are not an NCI designated center ( http://alturl.com/fes77 ). I would also recommend Rush

SJW1

Rianne,

When I was diagnosed with DCIS in 2007 they said my lumpectomy did not produce clean margins and recommended a mastectomy too. A world renowned DCIS expert, with whom anyone can consult, reviewed my patholgy and disagreed with my local pathologists. He said I did not need more surgery and calculated my recurrence risk at only 4 percent using the Van Nuys Prognostic Index. 

Because my risk was so low, I opted out of radiation. Surgery alone is accepted as a viable option by many doctors if your risk is low enough and you are comfortable with this option.

I have been using exercise, a vegan diet, supplements, DIM and bio-identical progesterone in a preventative program supervised by my "prevent" D.O. for the last 3 years.

Each person's case is different. Ask the most expert person you can find to calculate your risk, so you can get a good idea what is a reasonable plan for you.

Please feel free to send me a PM if you have any questions.

Best wishes and good health,

Sandie

mom3band1g

I cannot get this out of my head.  DCIS for 17 yrs that did nothing.  Damn, maybe I was over-treated.  What I wouldn't give to have my breasts back.  So hard to know what is the right decision.  I can't help but wonder if mine might have stayed the same for 17 yrs or more.  Almost wish I hadn't seen this.

CTMOM1234

I just want to thank both the original poster and everyone on this thread for their information and companionship. When last year's routine mammogram in my early 40s showed micro-calcifications and subsequent stereo.biopsy came back that I have DCIS grade 2, to quote, Bessie "the can of worms was opened." I was given the option of mastectomy or lump with rads and chose the latter. I miss the innocent days when the worst part of a mammo. was getting squished and I didn't have to know about all of this -- but it is so important to keep sharing our experiences so that we can all make the best educated decisions for our unique (and sometimes not so unique) circumstances.

Although I am certainly not glad that 1.75 mm of IDC was uncovered in my final lump.path.report, I completely understand where mom3band1g is coming from, because the thought of going through all of this for "DCIS for 17 yrs that did nothing" would be on my mind, too. Rianne, you are so fortunate and I'm not sure that I'd be jumping into anything given your history. This decision-making part is so difficult.

CrunchyPoodleMama

mom3band1g, keep in mind that for women with grade 3 DCIS, especially an extensive area, they are the most likely to have it develop into IDC, as Beesie was saying above. I personally am a "mastectomy ONLY as a very last resort and necessary measure" person, but I probably would have decided on a mastectomy (probably unilateral though) in your situation too.

Heck, I'm begrudgingy having a mastectomy next week and I only have grade 2... but, still have DCIS after two surgeries... my DCIS was huge... 9cm long chunk taken out of my boob already... and since I'm highly ER+/PR+ and hope to have a pregnancy in my future, it would be foolish to leave it in with a high risk of it turning invasive.

All that is to say, with grade 3 that was 6cm, I believe you did exactly the RIGHT thing. Someone like Sandie (swalters), with only grade 1 that was less than 1cm, just a lumpectomy was the right thing (and they're the lucky ducks who could have left it alone for 17 years). Don't miss the key message of the thread, which is that every case of DCIS must be evaluated individually.

mom3band1g

crunchy, thanks.  I do know I had the worst case with the best kind of dcis.  What a ridiculous statement!  Mine was over 6cm and went nipple to chest wall (very small boobage)!  I know you have struggled with the mast and I wish you all the best and a quick recovery.  Hope a baby is in your future and soon!

Annabella58

just to give a different perspective...I had DCIS, no nodes, clear margins, rads and tamoxifen for five years.  This was in 2001

Well, I got it again in 2007, this time invasive.  Still no nodes, stage one, clear margins, but this time chemo and a mtxmy with recon.  I had my ovaries removed to get the estrogen levels down, and to put me into menopause surgically so that I could now take arimidex. 

FYI: Even with no ovaries, your body tissues will make estrogen and so will you adrenal glands.  You can reduce, but not eliminate estrogen. 

Given what i now know if the insidiousness of this disease, and that any stage can progress, no matter the prognosis (mine was terrific), I am gong to go get a prophy mtxmy next fall.

I've had it with this beast.  Two times is more than enough.

Good luck in any decision you make and realize that drs. and medical info are not infallible.  All any of us can do is give it our best guess and not look back.

rianne2580

moms3band1g,

After reading all these posts, I'm kind of shocked I went this route myself. It's almost as though ignorance is bliss (in my case I managed through 17 years.) And I had mammograms every year after the 5 yr point. Before that, the first two years, mammo's every 3 months, then every six months. I do suggest an article called "Take the Carcinoma out of DCIS and ease off Treatment." Dr. Laura Esserman (MD, MBA, professor of surgery and radiology at UCSF) is strongly pushing for change. I am not in any way suggesting anyone on this blog change their course of treatment. I am only asking the question, are we well informed enough to make these life changing decisions?  I do not know statistics of when DCIS is likely to turn into IDC, why it does, how many women are out there living with it, and is it possible surgery makes it worse? My aunt had colon cancer, but it was encapsulated. When the surgeon removed the tumor he opened it up and the capsule and the bad cells leaked into her system. Made the entire situation worse. She had extensive chemo and bowel removed. She is still alive but not in good health in general.

I wake up at night thinking of all the possibilities, good and bad. Sometimes I think, what is wrong with me? Why do I fear surgery so much. All the plastic surgery that is done in this country...no big deal. Faces, boobs, butts, stomachs all operated on to "look" better. How many times has Pamela Anderson been on the surgery table? And surgery I may be facing is to save my life. I have to put this into perspective.

MarieKelly

Rianne, it's sooooooo good to hear a story like yours. Hearing from a real person helps to support the validity of studies suggesting some DCIS  (particularly low grade) could sit around for many years (or possibly forever) without becoming invasive. 

Just wanted to let you know that I was diagnosed with grade 1 IDC along with grade 1 DCIS back in 2/2004 and declined all treatment other than a wide margin lumpectomy and biopsy track removal. I'm fine so far with the only follow up being yearly mammograms (I'm now age 55 and in menopause with very non-dense breast tissue).  I can surely understand if you decide to do nothing once again. In all honesty, I would probably consider it myself if I had an experience like yours and could be certain it was nothing more than low grade DCIS. 

But if by chance it turns out you have some invasive cancer mixed in there this time around, and it's still just grade 1 and you choose to have a lumpectomy with no other treatment, make sure you get a surgeon who will remove the biopsy tract during the lumpectomy. Most of them don't automatically try to do it because they expect that you'll have radiation after a lumpectomy.  I suspect most of them would rationalize why they don't need to bother with it if asked about it, so you may have to shop around.  Having the biopsy tract removed will better your odds of having no invasive recurrence.   Best wishes to you - and thanks for telling your story!!

rianne2580

Thank you Swalters and MarieKelly. There are some great U Tube videos about DCIS that I just saw for the first time. Yes, the medical community is not sure and studies are ongoing.

myrrl

Very interesting series of posts - Rianne, thanks for starting all this. Another perspective: I had high grade DCIS, and only a smidgen of it. But given the extensive family history, my BS suggested I get the genetic testing done (I'm Ashkenazi Jewish). Turned out I'm BRCA1+, and that clinched the deal for me. By the time all was said and done, I had what I think you could consider prophylactic BMX. The tiny DCIS turned out to be all there was. There was a moment when I thought: did I just execute overkill or what? I've had some complications to my surgery, and when the days are rough, I certainly let myself wonder. I know that someday there will be clearer information about the genetic markers, and maybe we'd find that even though I have that particular marker, I also have other genes that protect me. But today, right now, we don't have that information. So -- BMX and ovaries -- done. I don't regret my decision, given the information I had. But if I'd been BCRA neg -- I probably would have gone for lumpectomy (even though with my family hx my BS was saying BMX whether the genetic testing was positive or not -- but that's another story).

Anyway -- the main bit I take from this is that if a physician tells you she is SURE of this or that -- she's ignoring the complexity of the situation. But it is complex . . .and each of us just has to make that DCIS - do I or don't I? decision the best way we can, for now. I trust and hope that by the time my young relatives have to face this, there will be clearer guidance. 

Beesie

The idea of "taking the carcinoma out of DCIS" is popular these days - I've read lots of articles about it.  It makes my blood boil, actually.  The reasons that are usually given are that some women over-treat their DCIS and many women over-react (and become needlessly fearful) when they receive a diagnosis of "breast cancer".  So to solve these problems, let's just not call it breast cancer then, okay!

Gee, what a great solution.  Well, maybe so, for those women who are diagnosed with low risk DCIS.  But what about women who are diagnosed with high risk DCIS, DCIS that might already be hiding invasive cancer?  Over the past few months, as this "take the carcinoma out of DCIS" movement has grown, I've seen more and more women come to this board wondering whether they need to treat their DCIS.  They say "it's a pre-cancer, so why do I need surgery?".  The problem is that in most of the cases I've seen, the women wondering about not treating their DCIS have what appear to be very high risk cases of DCIS. 

Let's look at some facts:

1. The fact is that nobody knows how long it will take, on average, for a low risk case of DCIS to become invasive (if it ever will).  Certainly there are studies that have shown that some cases of low risk DCIS don't become invasive for 15 - 20 years or more. 
2. The fact is that nobody knows what percentage of low risk DCIS will ever become invasive. The estimates of 25% - 40% (which is the range I usually see) are usually based on 5 year studies, or at most, 10 years.
3. The fact is that almost every expert agrees that high risk DCIS will almost certainly become invasive and that in many/most cases, this is a short-term risk. 
4. The fact is that of women diagnosed with DCIS through a needle biopsy, approx. 20% are found to have invasive cancer once the entire suspicious area is removed and examined.  Note that because these women are no longer Stage 0, they are not included in any of the DCIS stats on what percent of DCIS that becomes invasive.
5. One last fact:  Nobody knows which cases of DCIS are truly low risk and which cases are high risk.  While the grade of the DCIS and the size of the area of DCIS appear to be key factors in determining risk, there are cases where tiny amounts of low grade DCIS have become invasive.  There has been recent research that suggests that there are particular biological factors within the DCIS cells that may influence the likelihood that the cell will evolve to become invasive.  This research is preliminary; it's too early to draw any definitive conclusions.

So given the facts, given what we don't yet know about what makes a case of DCIS low risk and given all that we do know about high risk cases of DCIS, why in the world would anyone with a brain in their head recommend taking the word "carcinoma" out of DCIS?  Yes, some women who are given a diagnosis of DCIS become much more fearful than they should; many women do over-react and over-treat low risk DCIS.  But is the solution to change the name of the disease so that those who really are at risk end up not recognizing the seriousness of their diagnosis and end up under-treating their condition?  Over-treatment is bad, but under-treatment is worse, since it will lead to invasive cancer and possibly, death.

I agree that the misconceptions and misunderstandings about DCIS need to be cleared up.  I certainly agree that we need to find a way to reduce the fear and eliminate (or minimize) the amount of over-treatment.  How about education and communication?  How about having doctors properly explain to their patients what their diagnosis really means?  And one day, once medical science is able to determine with a high degree of certainty which cases of DCIS are low risk and which cases of DCIS are high risk, then only those low risk cases should be reclassified as a pre-cancer (or high risk condition) under a different name.  To ever take the word "carcinoma" out of a high risk diagnosis - a diagnosis like mine and so many others - would be beyond stupid.

Just my opinion!   

jorja61952

Beesie, that is so well said.  It's funny, because even though I was relieved that so far my diagnosis is DCIS and not IDC, my oncologist referred to it as "pre-cancerous" and not "non-invasive" cancer, which was my impression of it.  I thought that was sort of odd, but that must be an example of this new way of thinking.  In any event, it appears that she supports my feelings that I just want the whole breast gone!  Don't want to give it any chance to affect my life any more than it has and certainly don't want a repeat of the year 2000 I had with my other breast (MX and chemo)!  This has been a very interesting discussion.

Lilah

Very well said Beesie.

rianne2580

Beesie, you have researched like a Phd. Are you? I very much appreciate your opinion as well as respect it. I am a newbee to this as my positive needle biopsy was done Oct. 19, 2010. I forgot about any possibility of this diagnosis to rear its ugly head again. I'm gaining confidence to go forward and face the music as I read on...I ask myself would my quality of life be so diminished with the loss of a breast as opposed to the loss of a limb or organ? I am examining this possibilty with a realistic attitude, thanks to all the thoughtful and intelligent posts I've read.

Beesie

Nope, no PhD.  And no medical background.  But 30 years working with research (non-medical) in various capacities, from simply analysing studies to being responsible for large global studies.  Plus over the years in my jobs I often was thrown into situations where I knew nothing but had to become reasonably knowledgeable within a very short period of time.  When I was diagnosed, learning all I could about DCIS came pretty naturally to me.  I was also lucky that I had great doctors, who explained things clearly and well.

When it comes to how we deal with DCIS, I really do see both sides of the argument.  I worry about the current direction that seems to downplay the seriousness of DCIS, because in some cases it is very serious and it does need to be addressed just like any other early stage breast cancer.  To tell these women that they don't really have breast cancer would undoubtedly result in some women choosing to forgo treatment, and that decision could have very serious implications and might even be deadly.  On the the hand, I feel so bad when I see someone who has a small area of low grade DCIS panicking and choosing treatments that are much more severe and life-changing than necessary.  I read posts in the Reconstruction Forum from women who've had bilateral mastectomies who are having complications with reconstruction or struggling to adjust to the new reality of life without breasts, and then when I read their diagnosis lines and see that they had a small amount of low grade DCIS, I am so sad.  These women will say that despite the difficulties, they are happy with their choice to remove their breasts because they did it to "save their lives".  But with DCIS, that's simply not true and we need to do a better job of making sure that women understand this.  (Note that I am not talking here about women who had DCIS and also a high risk condition such as being BRCA positive... that's a very different situation.)

In my case, because I had so much high grade DCIS in a small breast, I had no choice but to have a mastectomy.  It wasn't what I wanted but it was considered medically necessary.  I doubt that there's a doctor in the world who would disagree.  My case is easier than some, because I had the microinvasion so I know that my DCIS was already starting to turn into invasive cancer.  But if I'd had pure DCIS, the surgery/treatment would have been the same.  If I'd been told that my DCIS was not cancer, I don't know that I would have agreed to having the mastectomy. Remove a breast for a pre-cancer?  I don't think so. 

Don't underestimate the impact of having a mastectomy. Hopefully it won't impact your quality of life, but it will impact you for the rest of your life. Whether we like to admit it or not, a mastectomy is a form of amputation.  Our bodies react to a mastectomy in the same way that they react to any amputation.  Some of us have phantom pains or phantom sensations - "real" feelings in our breasts, yet our breasts are gone (or they're silicone).  Phantom itching is very common (and very annoying - I get it all the time).  Then there is the emotional impact.  Some very lucky women never are affected but many women do feel a great loss - much more than they ever expected.  Often, in fact in most cases, this loss doesn't surface until after all the treatment is done or for those who have reconstruction, after the reconstruction is complete.  For those of us who have no choice but to have a mastectomy, these are things we have to deal with.  For those who have a choice, these are things that should be considered before the decision is made.  If you are considering choosing to have mastectomy, I would suggest that you read the Reconstruction forum and Breast Prostheses and Reconstruction Alternatives forum on this board. That will help give you a realistic idea of what to expect.

I will also try to dig up and bump to the top of the list in this forum an old thread about DCIS to Invasive stats.  It will give you an idea of why I'm so concerned about the current direction to downplay the seriousness of DCIS. 

mom3band1g

I can tell you for sure that if I had been told my DCIS was 'pre-cancer' there is NO way I would have agreed to a mastectomy and radiation.  I did ask about taking a wait-and-see approach and my bs said 'no way'.  I too hate to see women with small amounts of low grade DCIS having mastectomies.  That does seem too drastic.  I miss my old body everyday and still have a hard time accepting that I had cancer.  To hear people debate whether or not DCIS should even be called cancer is very disheartening to me.

Dazdnfused

Hi guys-

I have so appreciated reading this thread, and as Beesie knows, really appreciate all this information.

I have just a bit of "one more thing to consider" about DCIS.  I have "extremely dense breasts", "tough reads" etc.  My DCIS showed up on mammogram as one small new calcification on the left breast, went under density mammo, which showed more; the dang things glowed on an ultrasound (Which the tech said was unusual) and the ultrasound showed a "hyperechoic area" (something that had edges and looked dangerous) in addition to the DCIS.

I had an ultrasound guided biopsy of the hyperechoic area; it was benign.  I had stereotatic biopsy of calcs; they were grade 3 comedo necrosis DCIS.  From there I was referred to a great breast surgeon who wanted to do MRI first.  MRI not only showed more DCIS, it also showed a tiny 4mm spot close to the chest wall at 12 o'clock; the DCIS was right at the nipple at 12 o'clock.  Breast surgeon thought 4mm may be false positive, said let's go with lumpectomy to start. Day of surgery I had density mammo guided J wire for DCIS, had another MRI for MRI guided J wire for "spot" and sentinel node biopsy.  The DCIS that showed up on MRI matched the pathology almost identically and the 4mm spot was very low grade IDC.  Surprised everyone.  My surgeon said when he saw my breast tissue he was convinced I had microinvasion; turned out I have bad, bad tissue in there but MRI worked to match up with pathology.

I just had my first follow up and the mammogram showed tons of scarring (typical) so now I will be followed by MRI in combo with mammo.  I was good to go, but I will tell you now I am thinking hard about the future of my breasts. After a day of testing, I wonder if it would be easier to have a BMX.  The stress of testing is hard to deal with. I know either route is full of problems.  I just have to get to a place that I can live with my decisions, which is coming fast.  

Despite the limitations of humans and technologies, I will tell you that everyone on my cancer team is rooting for me.  They try so hard to pay attention, to follow up, to listen to me, and to get me information as quickly as possible.  While I am the one that has to live with the decisions, I have a responsibilty to listen to them as well, at least consider their expertise.  I will tell you that taking the "cancer out of DCIS" is absolutely ridiculous-an abnormal cell is an abnormal cell and if you want to really think about it, read the section of Susan Love's book on the biology of cancer cells, especially breast cancer cells.  The ability to detect DCIS on mammograms is probably one of the biggest benefits a mammogram offers, IMHO.  

Believe me, I stress out over many things, and I need to grow up a little.  That being said, the way to deal with this is to get as much information as you can and if you don't have a team of people around you that are working very hard to come up with answers, find new ones.  

Mom3band1g, you were my rads buddy (May rads thread).  I'll bet you do miss your "old body" but let me tell you-you sound like a wonderful mother and I'll bet your family is just so happy you are there for them!  You were my hero during rads, and I sincerely hope on your sad days you remember what a phenomenal person you are and that you made the best decision you could possibly make at that time.  When you miss your body, remind yourself how much the rest of your body means to all around you.  Many hugs to you.

Thanks for reading! (any ZZZZZs in there! Ha!) 

Kim 

Beesie

Kim, for the first couple of years after my diagnosis, going back for mammos and MRIs was hard.  I would start to get nervous weeks in advance.  But now, 5 years out, I honestly don't think about it for a second.  The way I look at it now is that I've made it through a BC diagnosis before and if it happens again, I'm much better prepared than I was the first time.  So now I'm actually less scared that I used to be, before my diagnosis.

A diagnosis of breast cancer turns our worlds over.  It's normal to be fearful for quite some time afterwards.  For some women, the fear doesn't go away but probably for 99% of us, over time it does.  You need to give yourself time.  You are just 7 months out from your diagnosis - at 7 months, I still worried every day!  So your reaction after today is normal but know that it will get better.