DCIS treatment confusion- please read thanks

kittenpaws37

Hi,

Im 37 and had my first mammogram on a whim (they asked if i wanted to have my baseline mamo and i said yes) in December and it turned out to show a tiny area of microcalcifications on my right breast. I then had a stereotactic core needle biopsy which resulted in a diagnosis of DCIS Stage 0, low grade, ERPR+ and ALH .  I underwent a lumpectomy 4 weeks ago and much to my relief, the pathology report came back completely clear and benign. Basically, i was told the lesion either healed itself when the body was healing from the initial biopsy or the entire lesion was removed with the core biospy  needle.  All along, my doctors recommened radiation and tamoxifen and I was on board. However, I began reading more about DCIS and started to question some things particularly stage 0, low grade DCIS. I waited to see what the pathology report after my surgery said, and now that i found out that it is basically gone and i dont even have a margin measurement because there was nothing to measure from, I am questioning the benefits and risks of radiation and tamoxifen, if i need both or just one, or none.

Ive read many cases online where women of low tumor size, low grade and good margins have been OK'd by their doctors or even told by their doctors forgoing further treatment was ok.  My doctors have not shown the same response especiallly my RO who is very adament I do radiation despite my stats on the pathology.  There was a moment I might not have been a candidate for radiation and they said there was a 20% risk of recurrence without radiation. Now, here comes where I am confused by something quite important to my decision.  My RO keeps quoting that lumpectomy with radiation cuts my risk by 99%. Leaving me a 1% risk of it coming back. However, I keep reading all over the web that radiation reduces the risk by 50%.  I spoke to my surgeon about something else and decided to ask her to clarify this. She went on to say that mastectomy cuts the risk to 99% which was what was done up til 10 years ago, but now lumpectomy plus radiation offers the same 99% cut as a mastecomy. SO, what is this 50% reduction in risk that i keep seeing??    I am really concerned about secondary cancers years later. Being 37, the docs say the benefits of radiation should be seriously considered. But i see the flip side of this, being 37, twenty years only puts me at 57. Still young by my standards! Of course, without radiation, something can occur too and i guess theres the 20% risk of DCIS or invasive returning.

I came across the Van Nuys Prognostic Index and also mentioned it to my RO and her response basically was that isnt very reliable anymore because women who were considered low risk and did not undergo radiation were showing up years later with recurrences and sometimes even invasive.   

I just feel confused and need to make a decision soon. I didnt know how this all worked, but if i knew id be in a time constraint situation with regards to radiation treatment (my RO said usually up to 6 weeks maximum to hold off on it) I wouldnt have had my surgery so quickly, however, then i wouldnt know what my pathology was.  If it had shown DCIS or something, I would have totally been on the radiation wagon.   

Can someone please tell me what the risks are with and without radiation?  Also, how is that so many doctors can give varying treatment plans for patients in the same categories.  Unless, Im overlooking something like my age of 37.

Any info or advice would be greatly appreciated.

Annette47

I can't give you your exact risks, but can hopefully add some information that might help.   Factors that increase the risk of reoccurrence include age at diagnosis, size of lesion, margins, grade, and presence of comedo necrosis.   From what you are saying, age is the main risk factor you have, but I wouldn't know what your overall risk would be.    If I understood your post it soundsl like you were told 20%?

Radiation cuts the risk of reoccurrence by about 50-60% according to my RO.   In my case (my pathology was different than yours although all of mine was also removed through the biopsy) my risk of reoccurrence was about 30%.   Rads reduced that to about 12%.   Tamoxifen will reduce that by another 40% to around 8%.  The risk of reoccurrence is given over 20 years because that's what studies have looked at, but the risk does keep going up the longer time goes on, so for those of us who are on the younger side (I am 45), that's an important consideration - in 20 years I will "only" be 65 - my mother was just diagnosed at age 75.    That's part of the reason that skipping rads is usually only recommended for patients with small, low-grade DCIS who are over 70 years old at diagnosis.

No one can tell you what to do, but an important thing to keep in mind in addition to the risks increasing over time is that when DCIS does reoccur, about 50% of the time it comes back as invasive cancer, so you're not just risking another episode of DCIS.   On the other hand, since it was picked up "easily" by mammogram, as was mine, that means that your chances of catching any reoccurrence early might be better than someone with harder to read breasts - you have to decide your comfort level with that.

If I were you I might try to get a second opinion with another RO as it sounds like this one didn't do a very good job of communicating with you ... you want to be sure you clearly understand the risks and benefits before making a decision.

Beesie

Wow, I think you need to find new doctors.  Yours are quoting - or misquoting - all sorts of information.

As Annette said, having rads cuts your recurrence risk by approx. 50%.  That is the relative risk reduction.  The word 'relative' is very important here, because what it means is that the actual risk you are left with after rads is relative to what your risk was to begin with.

If you have a large area of high grade DCIS and narrow surgical margins, you could come of out surgery with a recurrence risk that is as high as 50%.  On the other hand, if you have a very small area of low grade DCIS and wide surgical margins, your recurrence risk after surgery alone could be as low as 4%.  Most women with DCIS fall somewhere in the middle.  In the first scenario, a 50% reduction in risk from radiation would take the risk from 50% down to 25%.  Obviously, this is a huge benefit.  In the second scenario, a 50% reduction in risk from radiation would take the risk from 4% down to 2%.  This is obviously not nearly as large a benefit.  In both cases rads is reducing the recurrence risk by 50% but the absolute benefit is vastly different in each case.

So the question is, where do you fall on the risk scale?  Your young age certainly increases your risk but all your other factors appear to be very favorable.  So I would guess that  your recurrence risk, without radiation, is below 10%.  This is where a 2nd opinion might be helpful.  A lot of women have contacted Dr. Lagios directly to get a second opinion from him - he's the man behind the Van Nuys Prognostic Index.

As for what your doctors said about you having only a 1% risk after a lumpectomy + rads, the only way that would be possible is if they believe that your risk with the surgery alone is only 2%.  In that case, the 50% risk reduction from rads would be able to bring your risk level to 1%.  But a 1% benefit from rads hardly seems worth it.

The question of whether or not rads is necessary after a diagnosis of a small, low grade DCIS is a hot topic on this board.  Some of the recent discussions on this might be helpful to you:

Topic: No radiation?

Topic: Refusing radiation treatments?

Topic: DCIS lumpectomy without radiation?

Topic: anyone with low grade dcis not having radiation

Alternative to Radiation for DCIS

Topic: DCIS in biopsy but not lumpectomy-- should I get radiation?

Outfield

Kittenspaws,

I agree I think you need a second opinion, including on your original pathology from your biopsy.  A core needle biopsy takes more tissue than an FNA, but it's still a tiny little bit.  Did you see it?  I have a hard time believing that a core needle biopsy could have coincidentally removed the whole of something that was big enough to be seen on mammogram, even if small.

If I were in your shoes, I would want to be asking, in addition to the issues Beese raised:

1) Was the original path report correct.  Did I really have DCIS?

2) How was the area to be removed by the lumpectomy localized.  Did the doctor doing the core biopsy leave a metal clip?  Was that clip in the sample received in gross pathology? 

3) What is the chance the lumpectomy simply missed some of the concerning area?

A lot of people are very casual about radiation.  It's relatively easy for patients to do, it doesn't share chemo's lurking potential to kill the patient during treatment.  Radiation oncologists seem unified as a profession in their over-optimism about radiation's ability to produce benefits without longlasting harm, I think largely because most of them don't follow their patients longterm.  Radiation inevitably permanently and irreversibly damages the tissues in its path.  How much that ends up being a cosmetic or medical issue really depends on the person, but it's impossible to deliver radiation to the tumor cells without causing collateral damage. 

That said, I myself had radiation.  For me, accepting that damage and the risk it might affect my life in the future was worth the chance that the radiation could prevent a local recurrence.  But we are each in our own situation.   

I'm concerned that it's not clear what your situation is, in which case it's impossible to make good decisions about something that has a potentially big downside.  The good thing is that with low-grade DCIS, a second opinion is not an emergency.  You have the luxury of taking your time to find one that is really good. 

J9W

Something to keep in mind, you only do radiation once to a specific area. So, if you do so now for grade 0 and, God Forbid, something comes back later to that same breast in that same area, radiation is not an option.

proudtospin

I had DCIS and did all the stuff and almost 5 years out and doing well.  But mine was more than what yours seems to be.

But I definitely would get a second opinion from the best in your area.  I see you are NJ, you have many choices with great facilities near you. I was treated at Hackensack but there are many other great places in NJ.

Stay cool.  I had a dif health scare issue recently, 3 docs with dif opinions from the same hospital.  So I found a dif hospital with a guy who specialized in my thing.  

His opinion, was a urge relief to me!  Good luck, there are a lot of NJ folks who can give you recommendations on docs and hospitals.

Annette47

Just to respond to this quote from Outfield's post:   "I have a hard time believing that a core needle biopsy could have coincidentally removed the whole of something that was big enough to be seen on mammogram, even if small."

That's exactly what happened in my case and I know in other people's cases here as well.   My BS said it's actualy not that uncommon.   The diameter of the CNB is not that big, but it takes a long sample so depending on the shape of the lesion it can certainly get it all in some cases if the radiologist is right on target.

Outfield

Annette,

I hate to quibble, but in any case where that happens it's only an assumption that the biopsy removed the entire abnormal area.  I've seen that happen in other situations with other small tumors.  It can't ever be assumed to be the only explanation, and I have not ever seen that be the case.  If the thing removed was something very concerning, there is generally a lot of follow up because the "margins" are unknown.  

Annette47

Not sure what you mean by "unkown" margins?  They removed a good sized area of my breast which included and surrounded the entire cavity where the tissue was taken from the biopsy.   The margins were considered to be from the edge of the biopsy cavity to the edge of the lumpectomy, which would actually be a minimum as it would assume the entire biopsy cavity was malignant, when in fact it may not have been.   

Edited to add - my lumpectomy was wire-guided based on a chip that was implanted during the CNB.   Because the pathology report from the lumpectomy indicated that the tissue removed completely surrounded the biopsy tract (which was distinguishable on excision), I am confident they got the right place.   At the time of the CNB, the radiologist commented that the area was extremely small, and that if he was "lucky" he might be able to get it all.

I tend to trust the opinion of all 3 of my doctors (BS, RO and MO) who assured me that a) that's what happened in my case and b) it happens fairly frequently.

Quote from the department of Health and Human Services's Clinician's guide to Core Needle Biopsies:   

Are there false positive biopsies?

All open surgical biopsy specimens read as invasive breast cancer are considered true positive readings. In clinical practice, false positives are not considered to occur with core-needle biopsies. This is because a true breast cancer may have been small and completely removed by the core needle biopsy.

Got that from this website:  http://effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=406&pageaction=displayproduct

Beesie

Outfield, I understand your comments about the uncertainty in this type of situation but I can think of quite a few cases like this that I've seen among women who've come through this board over just the past couple of years.  I thought it was strange the first time I heard of this happening but it seems that having an area of DCIS that is so small that the biopsy gets it all is not as rare as you might think. I've seen this happen several times where the stereotactic biopsy was done using a core needle; often with a core needle biopsy 6 to 8 samples are taken and this is not an insignificant amount of breast tissue if the area of DCIS is only 2mm or 3mm in size. And this is even more of a possibility when the stereotactic biopsy is done using a vacuum-assist needle, which pulls up quite a large amount of tissue as the biopsy sample.  I've read of several cases recently where the radiologist intentionally tried to retrieve all the calcifications and the surrounding tissue within the biopsy samples. 

Having said that, with such a small tumor and with there being such a fine line between DCIS and ADH, a misdiagnosis is possible.  So for this reason, I agree completely with your suggestion that Kittenpaws have her pathology from the biopsy re-examined by a different lab. 

april485

In my case, the majority of my DCIS was removed by the vacuum assisted needle biopsy as well but not at the back margin. I had a "close posterior margin" after my lumpectomy so I had re-excision which made all of my margins huge (over 1cm each) and the only place any DCIS was still noted in the path report was in that posterior area so most of my DCIS was taken out during the CNB.

I think a second opinion on most path reports is a great idea. One never knows. As for rads, even with a second opinion, I opted in cause I was eligible for a one week, dose dense, 2 x a day trmt protocol based on my path reports. One of the criteria is over 50 years of age though so you would not qualify for this clinical trial. I begin this tx on 4/22 and am happy I will be done after one week. They have 9 years of data for partial breast rads (mine will ONLY be at the lumpectomy site plus one cm around that) and the results are "clinically insignificant" for recurrence rates between the full breast rads for DCIS and stage one so I am confident I made the right choice. It also keeps my heart out of the field as mine is lefty.

I was told a 50% reduction for me from 8% to 4% which is enough for me to do it! Still deciding on the tamox or AI benefit though.

Best to you whatever you decide.

Maurab2868

Ladies, I am new to this site and am hoping you can help me. I was diagnosed with dcis in my left breast when I was 39years old. It was high grade, comedo, 2.75cm with a lot of necrosis. It was December of 2006. I chose bilateral mastectomy at that time because my mother also was diagnosed with dcis with micro invasion when she was 64 yrs old. My mother had single mastectomy and radiation with tamoxifen. We both had genetic testing and carry brca 2 mutation. In addition both our dcis was estrogen positive. I am a working mom with 3 children and thought doing the most aggressive thing at the time was best. My youngest is now 14. Unfortunately we lost my mom last may to her cancer. She had a recurrence in the mastectomy site 14 years after her initial diagnosis and it spread to her brain. I am very concerned with our history and my post care. My bilateral mastectomy did show dcis and lobular in situ in the right breast that the doctors were not aware of. At the time I felt like I had everything surgically removed. Since my surgery, post care has been questionable. I had no chemo, radiation - nothing. I had yearly check ups where a nurse (not dr) would feel around my implants and that was it. Since my mom passes away and I am only 46 now, wouldn't there be better ways of being preventative? I am worried that I could end up with another cancer in my tissue and we wouldn't discover it until it is too late. I asked about MRI and the breast surgeon said it is not needed. I am young and want to be preventative not reactive. Just wondering what follow up treatments might be out there that can help me stay ahead of any potential issues. I appreciate any input. I think what you are all doing to support each other is phenomenal and really helps all of us. Thanks and God bless you all

momoschki

Just to add my story here: I had a core biopsy that took 8 samples. Two of them came back abnormal and I had the slides analyzed by 3 different pathologists at 3 separate hospitals. First came back as DCIS, second said "borderline" DCIS/ADH, and the third weighed in at pure ADH. In any event, it was entirely removed by the needle biopsy and my pathology report from the ensuing lumpectomy showed nothing. None of the doctors I consulted with (a total of 4 at some well respected hospitals) recommended radiation in my case. I was offered tamoxifen, but declined.

Outfield

Well, Beesie and Annette, I stand corrected - could not have imagined it could be common.  Annette, you described what I hope the original poster experienced in terms of location of the core biopsy tract.  

The question of a false positive isn't what I was implying.  That's really a different issue.  Biopsy is the gold standard for diagnosis, so there's nothing to compare it against that could be better and could identify "false positives," nor does that make a lot of sense conceptually.  Nevertheless, biopsies are read by pathologists, and pathologists are like many physicians.  They complete a residency in pathology and can then hang up a shingle and be general pathologists, or they can go on to do fellowships in something more specialized, or they can, without doing an identified fellowship, become very good at something simply because they have a passionate interest in it.  

Not to denigrate pathologists working out in smaller hospitals, that kind of thing, but if you have a situation where what are relatively subtle differences under a microscope are going to lead to big changes in treatment recommendations, I think it makes sense to have a second set of eyes take a look.  I tried to find the original source, wasn't able, but one of the major centers that makes a point of seeking out people coming for second opinions, like MDA or JHU, puts out stats about how many patients have their pathologic diagnosis changed after review of their slides there, and it was staggering, definitely up in the double digit range. 

Moviemaniac

Maurab2868-I am older than you by 12 years, but was diagnosed with DCIS/LCIS in my left breast after undergoing a CNB and Lumptectomy.  My mother had had a Unilateral Mastectomy when she was 69years old. (That was almost 30 years ago, and I never did get the actual pathology report on her surgery, this was the information I was given at the time.)  When my lumpectomy came back as positive for both DCIS and LCIS in that breast, I made the decision to do a BMX-as I would rather have no boobs than go through rads and then be waiting for the other shoe to drop in the other breast. Before my surgery, I had an MRI to look at the right breast, to see if anything showed up there, as the Mammo for that side was supposedly clear.  The MRI showed nothing.  I went ahead with the BMX, and the BS told me afterward that I had a 4 cm area of DCIS. as well as scattered areas of LCIS in the "clean" breast-that was NOT picked up by either the Mammo OR the MRI.  After my surgery, I met with an Onc, and he told me no further treatment was needed, BUT-he told me that after I was BRCA tested.....he said that if my BRCA tests (I had 3-BRCA1, BRCA2 and one other I cannot remember) had come back positive, we would be having a different conversation.  I was told I have a 1-2% chance of recurrence.....I can live with those odds.  I can tell you that when I was considering recon options, my PS told me if I opted for inplants, he recommended an MRI every 5 years or so-as that is not the option I chose, I honestly cannot remember if that was to check for leakage in the implants, or looking for recurrence of cancer.  I was very concerned about "not having done enough" to prevent a recurrence, and sought out a second opinion.  That Dr. (Onc.) said the same thing-I had  done more that enough....(but that was knowing I was BRCA negative).  I wish I could be of more help. At the very least, I think you should seek a 2nd opinion on further treatment.  Good luck.

SJW1

Dear Kittenpaws37,

All the info you read and hear is very confusing. One reason for this is because treating DCIS with radiation is very controversial. Doctors do not agree on this.

In 2007 when I was diagnosed with DCIS, I had a lumpectomy, but decided not to do radiation or take tamoxifen. One reason for this is because you can only do it once.

I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. He used the Van Nuys Prognostic Index to calculate my risk as only 4 percent. With such a low risk I wanted to save radiation in case I ever got invasive breast cancer.

If your risk is 20 percent, radiation will cut that down to 10 percent. However, other than your age, the size, grade and margins for your DCIS all sound very low risk.

The Van Nuys Prognostic Index has been used for a long time and has been verified indepently in several studies, the most recent of which is 2009 study entitled Local Excision Alone Without Irradiation for Ductal Carcinoma In Situ of the Breast: A Trial of the Eastern Cooperative Oncology Group by Lorie L. Hughes etal.

As far as low risk women having recurrences, yes that happens and some times it is invasive cancer. Nothing is for sure. Usually when that happens, even if it is invasive, it is usually treatable with exactly the same treatments that are used for DCIS.

What is most important is that you feel comfortable with whatever you decide to do or not to do next.  Also you can make lifestyle changes that will lower your odds of recurrence.

Please feel free to send my a private message if you have any questions. You can also read more of my DCIS story on my website: http://dciswithoutrads.com/

Wishing you all the best,

Sandie

ballet12

Maurab--I don't know if you have done this already, but I would get a consultation at an NCI-designated cancer hospital, with their genetics departments.  They often follow patients who are brca positive (because you are unfortunately at risk for other cancers, as well).  See what they say about monitoring.  If you are in the NY area, you can PM me, and I can make some suggestions.  One of my friends is BRCA1 positive, and post treatment for IDC (triple neg) one breast and IBC in other breast.  She is followed by a genetics department as well as by an oncologist.

whonu

I'm older than you but have also recently been diagnosed with DCIS, had the core biopsy then a lumpectomy and it was confirmed that all the DCIS was removed with the biopsy.  I just completed my first week of radiation and will be following that with Tamoxifen.  This was the treatment plan my doctors recommended.

While I realize no two situations are the same I felt compelled to tell you that two women on another breast cancer site I'm a member of told me that  once they were where I am.  Their doctors ordered radiation but not Tamoxifen.  Five and seven years later both of these ladies had recurrence of breast cancer and both have had to have masectomies.  In both cases their oncologists have told them that had their previous doctors taken their DCIS more seriously they would not be back.

Beesie

whonu, you are right that no two situations are alike.  And for that reason, we need to be careful to not put too much weight - or any weight, really - on personal anecdotes. What happens to one person has no bearing on what might happen to someone else. We also have to keep in mind that not only is every case different, but with personal anecdotes, we don't always get all the real facts.

One fact about Tamoxifen is that it is about 45% effective at reducing recurrence risk.  So one or both of the women you talked to might very well have had a recurrence anyway, even if they'd taken Tamoxifen. Frankly, I think it's irresponsible of any oncologist to suggest to a patient that not taking Tamoxifen led to her diagnosis.  There's absolutely no way that the oncologist could know that, and any good oncologist would know that there's approx. a 55% chance that the statement would be wrong.  What we also don't know is what their diagnosis really was - did these women have a tiny single focus of low grade DCIS, as Kittenpaws does, or did they have a higher grade DCIS and possibly, a larger amount?  Did they have screening - an MRI, ideally - prior to surgery that showed that the rest of their breast was clear?  Was the recurrence really a recurrence of the original DCIS or was it a new primary diagnosis?  I've been on this site for more than 7 years and if there's one thing I've learned, it's that the information we get from others about their diagnosis is often incomplete and/or not fully accurate.  So it's never safe to draw conclusions from someone else's anecdote.  And it's never wise to make one's own treatment decisions based on what happened to someone else.

Personally I think the best we can do is educate ourselves about our own diagnosis and the risks associated with it, and about the pros and cons of all the treatment options.  Second opinions and sometimes even third opinions from pathologists, surgeons and medical oncologists can all be helpful and add to our knowledge.  At some point, usually the "right" decision starts to come into focus. What's most important to always remember is that the "right" decision is what's right for you, not what's right for another patient, not what's right according to your friends or family or spouse, and sometimes, not even what's right according to some (or in rare cases, even all) of your doctors.

Kittenpaws, we haven't heard from you since your original post.  Are you still reading this?  And where are you on this now?

Maurab2868

Hi Beasie, do you know what preventative follow up others have had that are similar to my situation? Having a nurse feel around my implants once a year doesn't seem to be enough for me to be comfortable. I had a radical hysterectomy last year to address the brac2 gene but after my mom had a true recurrence of her original dcis in her mastectomy site I am now worried that she was such an anomaly, could that happen to me. I feel like I should be doing more than what is being done now. Does anyone get MRI once a year or anything like that to stay ahead of a secondary or recurring breast cancer? Like I said, I was diagnosed at 39 so I don't want to be in my moms shoes when I am in my early fifties or for that matter, ever. If I can be more proactive I want to be. Any insight would be greatly appreciated. Thanks to all you ladies who responded and God bless

Annette47

Maurab2868 

I just want to suggest that your repost your question in the BRCA forum on this site (go to the main list and scroll down and you should see it towards the bottom).   Many of those ladies have been in your position and might be able to share their experiences as to follow-up screenings following a BMX.

Chantel

Kittenpaws37-
I am 36 and diagnosed a year ago with the exact same DX- the difference with me is, the radiation oncologist told me that he couldn't sleep at night if he talked me into radiation, as it has a high likelihood of causing a 'life-threatening' cancer in 10-15 years.  And at our young age, he PERSONALLY recommends against it.  Having said that, it is definitely the recommendation for patients in our situation.  
I opted out of radiation and tamoxifen (already had the lumpectomy) and I have a mastectomy scheduled on the 30th of this month.  Which I am very apprehensive about because of expander pain.  So, I currently have a post on this forum asking how bad the pain is from that.  But you are not alone, we are the same age with same diagnosis and just as confused.  This sucks!!

Beesie

Chantel, when you say that you have the exact same diagnosis as Kittenpaws, do you mean that your DCIS was also fully removed with the needle biopsy?  And that it was just a single tiny focus of grade 1 DCIS?  What were your surgical margins after the lumpectomy?

Certainly there are many women who opt for a MX or even a BMX rather than have rads and/or take Tamoxifen after a diagnosis of DCIS.  However in somes cases where the DCIS is very tiny and low grade and the margins are large, the decision is made to opt out of rads and Tamoxifen after having just a lumpectomy. momoschki's explained in her post that this was her situation and recently there have been quite a few women some through this board who've made this decision.  My impression from Kittenpaws' posts was not that she was considering a MX or BMX in lieu of doing rads, but that she was wondering if it might be feasible to pass on rads after having her lumpectomy.  Certainly moving on to a MX or a BMX is one way to avoid rads, but with a very tiny area of low grade DCIS and wide surgical margins, it may also be low risk to pass on rads with just the lumpectomy alone. 

Blogger

Bessie - I was diagnosed in Sept. 2012 with DCIS, grade 2. I had an MRI and they discovered an 8cm lesion. I had a lumpectomy and the lesion was successfully removed. But, they found both breasts were peppered with non-invasive cancer cells which could be very dangerous in future years. I had a BMX Oct. 10, 2012 and expanders implanted at the same time. After a few weeks of healing they started injecting them with saline. For me it was not an exceptionally painful process; uncomfortable, YES, most definitely. The first two days after the expansion when your pec muscle is unhappy I took a muscle relaxer. Then theybstarted to calm down and stayed calmmuntilmthe next injection.The injections were not painful because all your nerves are asleep from the surgery. The muscle relaxers were definitely my friend. I had seven expansions that took almost 5 months. I was anxious to have the exchange but the TE's were not as horrible as I had heard they were. You have a very, very tight feeling and please ask your PS this question: "after the exchange and your nice, soft, new implants are in, does this tightness go away?" Mine did not. Yes, the implants are soft but the tightness is still there and my PS says it is a new normal and will not go away. I would have wanted to know this information earlier. I have learned and been helped so much from this forum. We sisters in this breast cancer journey must let each other know the questions to ask because our doctor's are leaving important information out. I hope this helps. But, please don't be afraid of thenTE's. Itnhas been a much longer journey than I ever expected and certainly more emotional than expected, also. My breast surgeon says, "short term pain for long term gain." Easy for her to say, right!?

Beesie

Blogger, I had a single MX and personally I think that too often women who are newly diagnosed underestimate the real effects of a MX, and particularly a MX with reconstruction.  My experience with reconstruction was a breeze - I found the TE process to be pretty easy and virtually painless. But what I discovered after the exchange surgery is that an implant reconstructed breast is nothing like a real breast.  For me it's close to 7 years since I had my exchange surgery; my reconstructed breast is part of who I am now but that doesn't mean that it's anything like a real breast.  I have good skin sensation, but obviously no other sensation, and that still frustrates me all these years later; for me, that was a huge loss. If I lean against something or if my breast gets poked, I notice a distinct numbness. I still get occasional phantom itching and if I do any unusually strenuous activity that affects my pec muscles, my breast aches for days afterwards. I'm lucky that I've never had any real pain; my problems are more annoyances and they are so normal to me now that I hardly think about them. But they are the reality of day to day life.

There are many reasons why a MX may be necessary and why a BMX might be advisable.  Blogger, for you, with a large area of DCIS in one breast and pre-cancerous cells in the other, a BMX was a very logical decision. But anyone making the decision should realize what's involved; thinking that a BMX will eliminate all your future concerns is simply not how it often ends up. In the years since my surgery, I have spent hundreds if not thousands of more days with concerns or frustrations about my reconstructed breast vs. my natural breast.

I never want to discourage anyone from having a BMX if that's the right decision for her.  But I do think that too often women react in fear to a BC diagnosis and simply don't want to know what's really involved with a BMX and reconstruction.  I read 3 posts just today where newly diagnosed women - who don't even know the nature of their diagnosis yet - are stating that they want to have a BMX because they "never want to go through this again". What they don't appreciate is that a BMX does not guarantee that they will never have to deal with BC again, and a BMX comes with it's own set of risks and side effects that you will have to live with for the rest of your life.  Some women have wonderful results and never have problems, but the majority do face one issue or another, some just short term and others long term. Personally I think it's very important to get the information out there, so that everyone can make an educated decision.  But unfortunately I've found that too often, women just don't listen to what they don't want to hear.  

Blogger

I could not agree with you more. My BMX is far more complicated than I ever dreamed. It is not something to take lightly which I am sure no person does. There are things that one never expects because we don't know what to ask. How about the discomfort after the exchange which could last a lifetime? How about the hormones going crazy because the hormone retaining breast tissue is gone? How about how unnatural the implants feel and how the tissue on your sides have no feeling? How about the new limitations with exercise? How about the worry of ruptures or contracture? I could go on but I will not.



I am cancer free and have been blessed with a wonderful PS with a big heart. With that said I would have liked to have been better informed.

kittenpaws37

Thank you for all the informative responses. I havent made a decision yet, some days I feel I should just do the radiation, other days, I feel differently. I thankfully got an appointment for a second opinion at Dana Farber for this Friday. My RO really never went into anything about cutting the risk by 50% so yeah, I dont think i had the best communication with this doctor.  

If one decides to have radiation now and it comes back as invasive, what are the options then? What is the risk of this sort of thing happening?   Is it just mastecotomy and chemo?  That is alittle scary to think that you are removing something out of the arsenal especially if one used the radiation for a small area of DCIS.  Also, I assume I will be watched closely with regular mammograms every 6 months for awhile.... so how hard is it to catch these things once they are invasive? I do have dense breasts but this DCIS was found very early and on my very first mammogram.  So, I dont know. I know its a 50/50 whether it local reoccurence or invasive. But is the invasive already out or is it generally still contained to breast ?? I guess that depends on how early it is caught? If one is going for regular mammo's, is this really hard to detect?

kittenpaws37

whonu--- those women had to have mastectomies because they had already had radiation. You cant treat the same breast twice.  T

kittenpaws37

Chantel, I have the same questions as Bessie. With my DCIS low grade, stage 0, clear margins and clear lumpectomy result , I am not even remotely considering a mastectomy right now. I am more concerned with what to do with rads. If I should keep them in the arsenal or if I should do rads now. Its intersting that your RO was completley open with you about rads possibly causing a life threatening illness in the future. My RO was exactly the opposite. Which is why this is such a concerning decision to make for all women. Sheesh. 

Being 37 and not married, with hopes to be, the idea of a mastectomy at this point, just feels far too aggressive for me and my situation.  I am not in that head space but I know that every woman is different on how they approach things. 

Beesie

kittenpaws, good to hear from you!  And great that you have a 2nd opinion on Friday at Dana Farber!

To your questions:

"If one decides to have radiation now and it comes back as invasive, what are the options then? What is the risk of this sort of thing happening?   Is it just mastecotomy and chemo?"  If it comes back, whether it's DCIS or IDC, you would have the option of a lumpectomy alone (obviously aiming for very wide margins) or a mastectomy. Most women at that point choose to have a MX. Chemo isn't necessarily required for invasive cancer - it depends on many factors related to the cancer. So with an invasive recurrence, or a new invasive primary cancer - chemo might or might not be recommended. 

"Also, I assume I will be watched closely with regular mammograms every 6 months for awhile.... so how hard is it to catch these things once they are invasive?"  What they would be looking for is any change or any new calcifications that form; then a biopsy would be done. They wouldn't know if it's benign or DCIS or invasive until the biopsy or subsequent surgery. The DCIS to IDC conversion is a change that happens at a microscopic level and can't be detected on the imaging films.

"I know its a 50/50 whether it local reoccurence or invasive. But is the invasive already out or is it generally still contained to breast ?? Generally it's caught while it's still contained to the breast but of course there is no guarantee of that. 

Here's a study that might be helpful:  Cancer Recurrence After Ductal Carcinoma in Situ Carries High Risks   While of course you can't directly apply this information to yourself, this study showed that of the women who had a lumpectomy without rads, 12.7% had a recurrence (keeping in mind that we don't know how your pathology compares to the average of those in this study), 4.7% of the recurrences were DCIS and 8% were invasive (that is a bit higher than most studies would suggest), and 1.4% developed mets.  Within all arms of the study (those who had MXs, those who had lumpectomies + rads, and those who had lumpectomies alone), the recurrence rate was 12.7%, the rate of invasive recurrence was 7.3% and the rate of mets was 1.1%.  This is completely consistent with many studies that have shown that the long-term survival rate for those initially diagnosed with DCIS is 98% - 99%.  

As for the long-term affect of Rads, there is a lot of debate about this, but I don't think that many would agree that there is "a high likelihood of (rads) causing a 'life-threatening' cancer in 10-15 years". The younger you are, the greater the risk, because some of the illnesses caused by rads may take 20 or 30 or more years to develop, but the odds of anything like that happening are quite low.  In fact recent studies on rads have shown that with changes in how rads is given (with a lot more care and caution), the percent who experience long term side effects and particularly, the percent who suffer serious illnesses that could lead to mortality, has been greatly reduced. It's possible, of course, but it's very rare, not a high likelihood.  The following article is not about DCIS - it's talking about invasive cancer - but it provides a good explanation of the impact of rads, both as it relates to breast cancer survival and relative to other morbidities: Postoperative Radiotherapy for Breast Cancer: Growing Evidence for an Impact on Survival   

Let us know how your appointment goes on Friday. 

kittenpaws37

Thank you Bessie.  It sounds like my RO was quoting me the survival rates of DCIS (98-99%) rather than reoccurence reduction. I do recall at one point when i asked what my personal risk was...she said something to the effect, well, she didnt know it could be anywhere from 0 to 30 to 100. She speaks really fast and sort of in a hyper manner, so it is abit offputting to absorb the info or to question what she was saying.  She is Harvard educated and all that, so I dont think I should have to worry about her qualifications but her communication style was abit difficult. She even said herself " i sound like a used car salesman, i really should stop that". So, she even noticed herself how she was sounding. I would have preferred a more measured discussion about what my concerns were.

Another thing that this RO said was that secondary cancers, like you said, are extremely rare, and most of the time happen to children whose cells are still growing. But then that week I heard about Robin Roberts from Good Morning America getting a secondary cancer due to her breast cancer radiation several years ago.   So, I was like...she isnt a child?!  Im glad that this stuff if very rare. But like you also said, being 37 ...20-30 years for something to develop doesnt have me at that old.

I will have to have my list of questions ready for Friday. The appointment that was made for me was with a breast surgeon. I called to ask if a surgeon would be the best person to seek a second opinion on preventative treatment options but they woman wasnt at her desk. I was told Id be callled back within a business day so we'll see. Ill take what I can get for sure, but what do you think?  I imagine a breast surgeon at a reknown cancer hospital is going to be knowledgable on all fronts? And wouldnt a RO just be a big proponent of rads no matter what?   Im just looking for the best for me, not necessarily an out for rads, but dont want to be overtreated either.