DCIS and confused

jadeblue

Hello all. I received sterotactic biopsy results Tuesday and had a visit with one surgeon today (I'm seeing another next week). I'm feeling a little confused, like it brought up more questions than it answered.

First off, the grade is 2-3 "high grade ductal carcinoma in situ associated with comedo necrosis and calcifications. No invasive carcinoma."

Does that mean that they SEE necrosis, or it's the type associated with comedo necrosis? And, if it's "2 bordering on 3" as they say, I guess that still counts as high. The "largest focus" is .8 cm. I understand that's on the small side (good). There are two close-together spots visible on mammogram. I know that the biopsy is a sampling and not necessarily the whole story.

What's confusing is that I mentioned to the surgeon that I'd like to treat aggressively (am considering a mastectomy) because I'm premenopausal and it's high-grade. She said that high grade is NO MORE LIKELY to come back than low grade with proper excision and radiation (which contradicts everything else I've read). She also said that lumpectomy + radiation is equally effective to mastectomy, which also doesn't sound completely accurate to me. Her attitude was like, "I'll give you a mastectomy if you want one, but I don't think it's warranted." (She stopped short of saying it outright, but that was my impression.)

Also, she said that many hospitals don't do MRI for DCIS because it doesn't pick up on it too well and can find other things that add to a patient's stress and turn out to be nothing. They DO use MRI, however, because they feel the chance of finding something that needs to be removed is well worth the drawbacks. Is MRI standard for DCIS? I don't even know.

She also prepared me for the possibility that invasive cancer may be lurking in there, and there's about a 10-15% chance they'll find something more troublesome, either in MRI or post-surgery biopsy. Does that percentage sound about right? I'm starting to not know what to believe!

Would LOVE to hear from women who've chosen mastectomy for DCIS: what factors led to your decision? How do you feel about it in retrospect, etc., etc.  I know there are some threads about this on the boards, so I'll read those too.

Oh, also, please share thoughts on how urgent it is to treat high-grade DCIS quickly. I want to have surgery within 2 weeks, ideally, but then I also don't rush into a treatment plan that may not feel completely right. I know if they find microinvasion (or worse), I'll always wonder if that could have been avoided had I not dawdled about decisions at this stage.

Thanks, all.

Best,
Jade

redsox

Jade- 

Does that mean that they SEE necrosis, or it's the type associated with comedo necrosis?

 It probably means they see necrosis.

She said that high grade is NO MORE LIKELY to come back than low grade with proper excision and radiation (which contradicts everything else I've read).

The doctor is right.  You will read many places here and elsewhere that high grade is more likely to recur than low grade, but there is good evidence that there is no difference in ultimate recurrence rates by grade.  What is different is the average time to recurrence and high grade recurs sooner on average than low grade.  Studies that report recurrence rates for DCIS by grade at 5 years will show that high grade has a higher rate of recurrence than low grade and the difference is usually statistically significant.  But if you look at reports of the same studies at 10 years the recurrence curves have come together and there is no significant difference in recurrence rates by grade.  note: I tried to find a reference to post for this and the one I know shows this requires a username and password to access.  I will look later and add a reference if I can find one that is accessible  

edited to add -- one reference that shows this is the following but even earlier ones I looked at require a password.  ARGH!!!:

• Lawrence J. Solin. The Impact of Adding Radiation Treatment After Breast Conservation Surgery for Ductal Carcinoma In Situ of the Breast. J Natl Cancer Inst Monogr (2010) 2010(41): 187-192 doi:10.1093/jncimonographs/lgq020

She also said that lumpectomy + radiation is equally effective to mastectomy, which also doesn't sound completely accurate to me.

Survival statistics show no difference.  Recurrence rates are lower for mastectomy.  Lumpectomy and radiation should be as good if you have good follow-up and find any recurrence early. 

Also, she said that many hospitals don't do MRI for DCIS because it doesn't pick up on it too well and can find other things that add to a patient's stress and turn out to be nothing. They DO use MRI, however, because they feel the chance of finding something that needs to be removed is well worth the drawbacks. Is MRI standard for DCIS?

MRI is still controversial and you will find different opinions.  It does sometimes find more cancer but it also finds more false positives.  Doctors disagree on whether it is worth it.  

She also prepared me for the possibility that invasive cancer may be lurking in there, and there's about a 10-15% chance they'll find something more troublesome, either in MRI or post-surgery biopsy. Does that percentage sound about right?

 That sounds about right.

I would LOVE to hear from women who've chosen mastectomy for DCIS: what factors led to your decision? How do you feel about it in retrospect, etc., etc. 

 I had lumpectomy + radiation and am happy with that decision.  For me mastectomy seemed like overkill and would have been another steep hill to climb emotionally.

Oh, also, please share thoughts on how urgent it is to treat high-grade DCIS quickly.

After my husband the next person I talked to about the initial diagnosis was a friend who is an oncologist.  He was firmly urgent about getting the lumpectomy.  Once that came back still DCIS and low grade, he said I could take time to decide what to do.  Get appropriate care but the urgency dropped.

SuebeeBC

Redsox is right (love the name too - Im from the Boston area)....I had a mastectomy and pretty much had no choice.  My DCIS was across a wide area and my first, second, third and fourth opinion was that they would be taking so much breast tissue by doing the lumpectomy, that a mastectomy was the only good choice.  I was an A- bra size before so there wasnt much to work with.  They got it all and my nodes were clear, so I am comfortable in knowing that part of it is all done.  No rads, no chemo, no tamoxifin. 

Its not easy.  I keep reminding myself that reconstruction is next and that gets me through this first recovery.  My BRCA tests were normal and I have no other risk factors - so looking back, if I had enough breast tissue to warrant a lumpectomy only, I probably wouldve gone with that.

Anonymous

Some studies show that BLM has a lower reoccurring rate.  I had one, only one breast was cancerous, I don't regret it at all.  I just didn't think that I could handle getting mammos and worrying constantly.  It did give me peace of mind.  But everyone is different

A second opinion is good.  Take in your questions or take someone with you

Good luck,  

CarylC

I have multi-focal, multi-centric DCIS in my right breast so will require a mastectomy, did not get biopsy on left breast but will be doing bi-lateral mastectomy for my own peace of mind as mammogram did show several areas of microcalcifications.  

I also have 2 areas of microinvasion but my surgeon didn't say anything about any possibility of further invasive areas or any possibilities of anything worse . . . 

Shrek4

My stereotactic biopsy showed DCIS grade 2. It can only show what it was in the sample taken. My BS ordered a MRI, it showed a much larger area included ( I had already decided for mastectomy as I didn't want rads and wanted a better chance of not getting a recurrence) and suspicious area in the other breast. I had already decided to have a BMX, and this last result just strenghtened my decision.

As you can see from my signature, it wasn't just DCIS in there.  I would have had lumpectomy and mastectomy afterwards. On top of that, my "healthy" breast had a 6 cm area of ADH. 

So, yes, ask for an MRI. 

redsox

I agree that most would want MRI after the initial diagnosis. 

I was responding to the question about whether MRI is standard -- there is not a real consensus on its net benefits.

Herky

I'd also suggest an MRI - mine showed the are to be 9cm. It was so large that a lumpectomy wasn't an option for me and it was an easy decision to have a bilateral mastectomy done because I'm young and there's alot of history of breast cancer in my family. I just wanted it out and didn't want to worry about it anymore. As for the breast with the DCIS, the final path showed that the DCIS was all non-invasive and I had clear margins, so no chemo or radiation for me either. But it also showed that the true area of DCIS was only 3.5cm and the rest was Paget's disease of the nipple. I'm glad I decided on the bilateral too because they did find microcalcifications in the other breast that the MRI showed as clear. But, my surgeon did the MRI before he did the biopsies because sometimes when you have the MRI after it'll pickup the bleeding caused by the biopsy. So, I guess what I'm trying to say is that the MRI is important and can give you alot of information, but it's not going to tell you everything. I agree with JBinOK too - as for a sentinel node biopsy. I did, and because of it I only had 3 nodes removed.

Best of luck to you!

Deirdre1

Just a quick note, MRI's are actually becoming "standard of care" in many areas.. I had had many negative mammo's and when the MRI was done the doc's didn't believe the radiologist had found anything but he had, he had found DCIS that a Mammo, Digital Mammo and Ultrasound had missed (and they were all done days from each other)...  Now very recently breast cancer symposium have suggested that the word cancer be removed from the DCIS dx and because of that I have heard quite a few women say that their doc's were no longer ordering MRI's.. But breast MRI's have been around enough so that we are getting much better reads - the techs are getting better at doing them and the radiologists are getting better at reading them... What we never hear is that all of the tests can and do give false positives as well as negatives... Without a breast MRI I would have gone on "fat and stupid" about my breast cancer and frankly I wouldn't have known anything until the lesion was large enough for the mammogram to pick up - for that I am very happy that I had a breast MRI...  Good luck to you all!!!  Deirdre

xtine

I agree with most of the previous comments. Definitely have the MRI. For me it confirmed that the DCIS was at least as big as they estimated, and helped me be more comfortable with the recommendation of a mastectomy. It also reassured me that the other breast was fine.

As for the suggestion to request a sentinal node biopsy... if you do any node biopsy you should have a sentinel biopsy, as it removes fewer nodes. But I don't know that a node biopsy is necessary. If you just have a lumpectomy, you can perhaps skip the node biopsy and do it later if the final pathology is concerning. If you have a mastectomy you should do the node biopsy right away, as there is no way to find the sentinel node(s) after the mastectomy. Removing nodes, even just one, exposes you to a risk of lymphodema. So if they are confident you have just DCIS, which can't spread to the nodes, it's worth trying to avoid this.

As for the choice of mastectomy or lumpectomy, I had to have a mastectomy due to the large area of DCIS. If my cancer was smaller I probably would have chosen a lumpectomy. Removing a breast (or two) is not a trivial decision, though many people only feel comfortable if they go this route. If you search for posts by Beesie, you'll find several places where she goes over the pros and cons of mastectomy, which could help with your decision.

azul115817

Hi Jadeblue,

I was diagnosed with DCIS last September and ended up having a bmx in October.  These were some reasons that I opted for the bmx:

1)  The doctors and radiologists thought (based on mammograms, ultrasound and MRI) that I had a very small area of DCIS.  For that reason, I chose a lumpectomy initially.  Since the area of DCIS was much larger than expected, my margins were too narrow.  At that point, my surgeon started talking mastectomy.

2)  Since the scans did not pick up the full extent of my DCIS, I was not comfortable opting for reexcision or future monitoring of my both my breasts through those same scans.  I just didn't trust the scans anymore to find disease in my breasts.  A "clean" scan would not make me feel any better.

3)  I'm a worrier, and I didn't want to have to go through the whole mammogram / MRI / biopsy process again.  

4)  I was relieved to avoid radiation and Tamoxifen.

5)  And although this factored little into the equation, I did consider that I wanted to have a good cosmetic result with matched, symmetrical breasts.

I had the mastectomy with immediate construction in October and just yesterday had my exchange surgery to have my implants put in.  I haven't regretted my decision at all, and I would do it again if given the chance.

Good luck with your treatment!

Heidi

Laurie08

I also had DCIS grade 2-3.  that was about 1 cm.  They did give me an MRI to see if there was anything else that they could be missing.  I chose to have a bilateral mastectomy.  My Dr knew that I had lost my mother to BC five years previously and said she knew that was what I was going to want.  I asked her if I was crazy and she said no not at all.  She did say that lumpectomy + rads was just as effective.  I nodded my head and said I think I want them both gone though and she said ok, let's get things lined up then.  I was diagnosed in April and had my surgery two months later.  It felt like forever to wait but to get the breast surgeon and the plastic surgeon together in the summer for a 6+ hour surgery took time.  I am glad that it took a bit of time.  It gave me time to read and figure out how I wanted to do the reconstruction.  I changed my mind about a lot of things, I went from wanting a TRAM to expander's and implants, nipple sparing, no nipple sparing etc.

I don't regret my decision at all.  For me I felt it was the only choice I had.  I didn't want to always wonder if they got it all, is something else growing int here now, when is the bomb going to go off? I was diagnosed at the age of 34 and figured I was very lucky I had caught it when I did and wanted to be as aggressive as I could.  Probably not a good sign when you get it in your 30's right?  It is a very personal decision.  Do a lot of reading and a lot of soul searching and you will find the right answer for you.  Good luck to you!

crlacey

I had high grade (3) DCIS with micro invassions that was HER2 positive. I had a lumpectomy and am currently going through radiation. In my case, the size of the area grew quite quickly due to the high grade and HER2 working together. I had my biopsy on Dec 2 and surgery on Dec 20. At the time I wasn't sure what to do except get it out fast. I have since had genetic testing which came back negative. I'm 30 and since I have young kids, I'm happy with the quicker recovery of the lumpectomy for now. As it is, my DD has had her moments of distress over this. So for now the faster we can have this over and have me normal and cancer free, the better it is for our whole family. Now if they find something again someday, we may consider other options.

jadeblue

Thanks, all. As always, I appreciate the good information. I'm definitely doing the MRI and am swinging back toward lumpectomy unless the MRI reveals larger/multiple areas of DCIS, in which case I'll be glad that I've already started the psychological prep work to make peace with mastectomy. My surgeon does NOT do sentinel node biopsy at time of excision (does separate procedure later if pathology warrants it). Given the grade 3 and ER-/PR- status, should I be revisiting that decision?

Best, Jade (pre-excision diagnosis of grade 3 DCIS, ER-/PR-)

jadeblue

@JBinOK: My surgeon mentioned that many do sentinel node biopsy at time of lumpectomy but she prefers not to to avoid the risk of complications, including lymphadema. I'll ask her again, because I think the high-grade ER-/PR- DX does make it much more likely I'll need one. She did say she does sentinel node biopsy with ANY mastectomy because that's the only opportunity to do it.

beacon800

You have been given good advice here.  Based on what you know so far, I would not do sentinel node at your lumpectomy.  There is a good chance that no invasive will be found.  Sentinel node is a longer recovery with higher possible side effects.

I had excisional biopsies first, no sentinel node taken.   When those biopsies showed no invasive cancer,  we did BMX (based on family hx and my preference) and we did not do sentinel node.  It was a really hard choice for me on that, I talked to 3 oncologists and made a plan on what we would do if there was invasive found by surprise.  Good luck, there was no invasive so I  was spared two sentinel node biopsies that might have caused trouble down the road.

Now with the latest reports saying node dissection doesn't extend survival, I would be even more  hesitant about doing sentinel node when you have not found any invasive cancer. 

horse-n-around

I chose a BMX for several different reasons

1) avoid hormone blockers being needed (no real amount of breast tissue left, thus benefits would not outway the side effect risks)

2) avoid radiation (pure DCIS is non-invasive)

3) I already had implants, that made sterotatic biopsies not possible due to the lack of breast tissue (I was extremely small on top prior to implants (AAA-AA).  Any "future" suspicious areas would require more surgical biopsies with wire location (wire location is  barbaric in my mind, I'd rather get kicked by a horse that have that again). I don;t handle anesthesia well at all and get very sick from it.

4) 95% of my breasts were implants anyways, wasn't really losing much of my own.

those were my primary reasons, no regrets and had my surgery on 2/16/11 and healing up now

NotAfraid

I was diagnosed with DCIS in 2004 in the right breast at 42.  I had a lumpectomy and radiation.  In January of this year, a biopsy confirmed that I now had DCIS in my left breast in 2 places - the 2 pareas they biopsied.  I am going to have a BMX this time.  I don't want another surprise (I was just starting to think I wouldn't get cancer again!).  I really didn't mind having uneven breasts for the past 7 years.  I ended up being a DD on the left and a C on the right and you really couldn't tell unless I was naked.  But, this time, with 2 areas (that are known) and this being the 2nd and 3rd occurance of DCIS, it's BMX time for me.  I don't want rads again.  I can't tolerate Tamoxifin (it makes me suicidal!)  I don't want to find out in 7 years I have more cancer. 

It's such a personal decision and none of us seem to have a crystal ball, damnit!  It would be really nice to see the future, wouldn't it?

sunshinegal

Hi jadeblue,

My stereotactic biopsy showed grade 3 DCIS w/ comedonecrosis; the same week I had an MRI which essentially confirmed what the mammogram had shown, that I had quite a large mass that definitely required mastectomy. It also confirmed that my other side was fine - BI-RADS 1. I don't know if it's protocol in the Boston area to do MRI but my doctor ordered it without hesitation.

It was about 5 1/2 weeks between dx and surgery, and I was worried about the time lapse. Every doctor I consulted, and the consistent feedback on this site, was that that time lapse was fine, that even a high grade cancer doesn't grow that fast. True, I was also counseled that they could well find invasive tissue (and my surgeon seemed to expect that he would) but in the end my pathology came back pure DCIS, grade 2-3. My surgeon did a sentinal node biopsy at the time of surgery, which also came back negative. Oh, I also opted for a single mastectomy with immediate reconstruction: I don't have the BRCA genes and the shock of losing both breasts would have overwhelmed me, particularly since the other breast showed no abnormalities whatsoever.

I did not have radiation or start Tamoxifen, although my case wound up being a bit of a gray area because some of my margins were small. After getting opinions from two tumor boards (one of which was split in opinion, the other a consensus view that I did not need rads), I opted out of rads and am now awaiting exchange surgery (April 6).

 If I had had the choice of lumpectomy/rads vs. mastectomy, I'm honestly not sure what I would have done. In a weird way I was thankful that I had no choice in the matter: my 9.5cm tumor left no question that I needed mx.

You sound like you are handling all of this pretty well. What a sucker punch though, huh?

Good luck with your decision!

Beesie

jadeblue, 

I think it's good that you have decided to have the MRI.  As others have said, there are mixed opinions on whether MRIs should be done on patients with DCIS but most of the more recent studies have suggested that MRIs are more effective at finding high grade DCIS than mammos.

In my case while I knew after my excisional biopsy that I had two areas of high grade DCIS (and no clear margins after the surgery, plus the discovery of a microinvasion), there was no way to know just how much DCIS was left in my breast.  So my surgeon and I didn't know whether a re-excision might have been possible or whether a mastectomy was necessary.  The MRI, which showed "stuff" throughout my breast, confirmed that a mastectomy was necessary.  My surgeon did explain that until the surgery was done, there was no way to know for sure if the "stuff" was more DCIS, but we both guessed that it was. Turns out that the MRI was right - my small breast was full of DCIS.  The good news was that my other breast, which had always been my "problem" breast (lots of biopsies over the years), appeared perfectly clear on the MRI.  So that gave me the confidence to have a single mastectomy.  That was 5 years ago and since then my remaining breast has had no problems so I'm very pleased with my decision.

Because I had the mastectomy and had the microinvasion, I had no choice but to have the SNB. The microinvasion was the clincher but even without the microinvasion, given how much high grade DCIS I had, I'm pretty sure that my breast surgeon would have recommended the SNB. However if I'd had a lumpectomy (which was by far my preference - and still would be today, even having had a mastectomy), I would have passed on the SNB.  An SNB presents a risk of lymphedema for the rest of your life, and once you have lymphedema, you have it for the rest of your life. I take precautions all the time, such as no blood draws or blood pressure on my BC side arm, quickly cleaning and bandaging all cuts to my hand (to avoid infection), etc.. For me, thinking all the time about these precautions and about my risk is a pain in the butt; it's something I wish I didn't have to deal with.  For other women, the reassurance of having a negative SNB is worth the risk and the need to take precautions (and some don't bother with the precautions).  Only you can decide what's right for you.

Good luck with the MRI. I hope that it doesn't present anything new and your can proceed with your plan to have the lumpectomy.  If after the surgery you are still considering whether a mastectomy might be a better approach, there are a number of other discussion threads where this is being discussed that might be helpful to you as you make your decision.  Here's a link to one of those discussions:  Lumpectomy vs. Mastectomy

I hope that helps! 

Edited to try to fix the link.  If it still doesn't work, you can find the Lumpectomy vs. Mastectomy thread in the Surgery forum, currently on page 2 (but it might be bumped back to the top of the list if someone posts). 

hallsnj5

Jade,

First of all, welcome. So sorry you have to be here, but as you can see from all of these posts, it is the best group of well-informed women you will come across. I know that you are dealing with a very personal decision and will make it based on what is best for you. I was diagnosed with kidney cancer a year before the breast cancer and was so freaked out about getting "it" out (it took almost 3 months from when they first found something to surgery) that I sometimes wondered if maybe I could have found a surgeon who would have been able to save my kidney. This really came into play when I was diagnosed with BC on the same side as my remaining kidney. I was scared to death that radiation may harm it.

I was diagnosed with high grade DCIS. My first step was a lumpectomy with 9cms removed. When the pathology showed IDC and the margins were too small, my breast surgeon wanted to go back and take more and do a breast reduction. An MRI showed nothing further. My biggest fear was reccurence which she said rarely happened in the other breast. After consulting with an oncologist, we both decided a BMX was my best bet. When I went for my post-op appt. with my breast surgeon, she still told me she thought I over-treated myself until the pathology showed areas of LCIS in both nipples that were not picked up on MRI.

We all live with some fear of recurrence and luckily many never have to face that, but if you read through these boards, you will see that many women do deal with a recurrence and if that happens there are many issues reguarding reconstruction of a radiated breast.

Best of luck to you as you make you decisions and begin this journey.

hallsnj5

I also wanted to add that after my mastectomy and my breast surgeon saying I was "overtreated" there was an article in the paper about the head of the oncology department I went to having been diagnosed with DCIS and opting for a mastectomy. It reassured me that if she opted for a mastectomy than I was not to feel like I was overtreated!

Deirdre1

"overtreated" is a term that is thrown about a great deal and honestly it should not be used with a person who has already been treated...  The real problem with DCIS is the undertreatment can be just as problematic - it's about striking a fine balance and the doc's should be helping us all with that..  I too had a bi-lateral mastectomy even though when I was first dx'ed my intention was to have the lesion (Grade 2/3) removed and then "watchful waiting".  I was aware that this could be difficult - every 6 months a mammo, another 6 months MRI potentially more biopsies if other 'stuff" was discovered.  After trying to convince my doc's that this was the way to go they started "fearing" me into the bi-lateral mostly because THEY had not educated themeselves and a little because there isn't a great deal of research on male breast cancer (my father had died from breast cancer).. So I did understand that they were "afraid" for me, but they should have educated themselves better on the difference between male breast cancer and female bc ((trick is there isn't much of a difference (if any) at all.  So in this case what is good for the goose is also good for the gander)) but the phone started ringing when 5 weeks had elapsed 1st my PCP ("you must make a decision"  I thought I had!", then the bs "bi-lateral is the only way to go for you and under your individual set of circumstances" (This is very important because WE all have a different set of individual circumstances)..  The ps "why not take them both off and be done with it"... Really a very under-educated group but unfortunately I trusted them and went through with the bi-lateral with immediate reconstructionl.  I have been sorry ever since...  So be very careful and hear your own voice, honor it and understand that even when your doctor's are fearful they don't always know the outcome and you are indeed an individual with different set of circumstances!  This is why I always suggest that a therapist be included into the group of specialists (I honestly don't know why they haven't already done this!).  A therapist job is to help you hear your own voice through all the fearful voices in your live, well meaning or not - this is a situation that you must decide for yourself (and the help of an educated doctor) or you will potentially live for years with depression.  I know I did and I am not the depressed type yet the loss of my breasts and the adjustment to the "new me" took over 3 years.  I believe that time could have been reduced substantially by 1) being allowed to come to my own decision with all of the information I could get 2) if I decided ultimately on a bi-lateral finding a doctor who would do a nipple sparing mastectomy as I believe this will help the mind heal.   I know how difficult these decisions are so please do your own personal research and insist on being allowed your own voice..  Then I wish you the best in outcome that is possible!!!  Best, Deirdre

jadeblue

@ Deirdre1: so sorry for all you went through, including a great deal of trauma that should have been avoided. I agree that counseling should definitely be part of the decision-making process and that women should seek it if it's not offered (which it clearly should be but usually isn't). I'm not worried about over-treatment so much as under-treatment. My surgeon seems to think I'm good to go with a lumpectomy and rads, but with high-grade, hormone recpeptor neg DCIS, a family history (mom), and my pretty young dx age (premenopausal 44), I don't know if I'M comfortable with that. I think that whether we choose more or less, we can only be at peace with our treatment if we feel we had a hand in choosing it instead of having it forced upon us. I'm sad that you fell into the latter camp, and I'm glad you have come a long way toward making peace with the "new you."

azul115817

Jadeblue,

You may have mentioned this and I missed it, but are you having genetic counseling done?  That may help you to decide on what treatment you want.

Like you, I am 44 and premenopausal.  There is no breast cancer in my family, but my grandma had ovarian cancer.  Because of that (and my age), the doctors recommended having the BRCA test run.  It came back negative, but I knew that if it had come back positive, I would definitely have opted for a bmx.

I ended up with a bmx anyway, but the genetic testing was one piece that went into my decision making process.

Heidi

Deirdre1

JadeBlue:  Thanks for your comments that is one of the great thing about this web site...   we can all get support even when the actual event was years ago!  And your positive comments about me are very appreciated!

OK so if you think you are undertreated let's walk through that...First of all I support any decision you make!  <warm smile>  This is all difficult enough without each of us adding to it...  So you are uncomfortable with leaving the treatment at the lump. and radiation... I agree with Heidi about a gentic counselor - would your insurance cover a review?  Also many many doc's do use MRI's as a piece of "watchful waiting" as well as digital mamos, ultra sound etc. and you are probably correct you do need to be followed.. I would push that with your bs and if that isn't helping I might consider changing to another bs... I know many of us are very connected to our bs, but honestly if she isn't supporting you (for your mental well being as well as you physical health) then it might be time to change to a new bs..  Best, Deirdre 

jadeblue

@ Deirdre1 and Heidi429: Yes, I'm scheduled for genetic testing. It took a few days to get insurance approval (ka-ching) but I'm a definite candidate for it and will have the blood drawn this Friday. I still go back and forth between lumpectomy and mastectomy. But, I'm leaning back toward lumpectomy (followed by "watchful waiting") because:

1. I got a second opinion with a surgeon I feel more confident about! She is a surgical oncologist who does only breast cancer surgery and seems better informed than the general surgeon I first saw. She is recommending a Benelli incision with "bracketed" wire-localized lumpectomy (using two guide wires in the separate areas instead of just one). This will be less disfiguring (will avoid scar in cleavage) and seems more likely to give good margins than a single-wire procedure.
2. An MRI revealed no further issues (I understand that's no guarantee, but still a relief.)

I'm glad I did the psychological prep for mastectomy, because I am ready to go there in a heartbeat if the margins are not perfect. (Surgeon already warned me that I don't have enough boob for a re-excision.) With high-grade ER-/PR- , the margins are my only real insurance policy. (Ack...now that I'm writing that I think "you have no business getting just a lumpectomy with all that going on." Welcome to my brain!)

Heidi429: Do you mind saying how you decided on bmx with grade 2 ER+/PR+? Was it the size of lesion? Was the other breast clear?

Thanks again for your help and support. So greatful. -Jade

Thora

I can't answer for myelf.My doctor recommened a lumpectomy DCIS(2 benign 1 small malignant).I chose that BUT 16 years ago I was in shock when my  friend chose a lumpectomy(with some lymph node invasion) I asked  her why?? Her doctor said with a lumpectomy they find just as many breast cancer patients with a lumpectomy are living longer or just as long as those with a masectomy.That was 16 years ago and my friend is doing great now.She was Stage 3 invasive cancer with some node involvement. No problems.She chose lumpectomy like her doctor recommened and it is working.Same thing this doctor is telling you.   

We all make our own decisions.I didn't agree with my friend years ago but it worked. 

 Some of the things I am hearing talked  about I never heard from my doctor.Malignant tumor  was found, decision made, operated then on tamoxifin after my recovery. 

 Thora         

Deirdre1

Oh I'm so glad you have found a bs that will work with you on getting what you need to make this work!!!  It's so important the the doc's we work with can see from our perspective as well as their own!  I think you are really on the right track!!!  Get the genetic counseling and it sounds like the new doc will work with "watchful waiting"... Best of luck and please touch base again when you can!!!  Best, Deirdre

bellaroseshell

Please get a second opinion! I didn't feel right with all the surgeons I met with until I found one that totally understood my confusion and he answered all my questions. I had DCIS in situ Stage 1/2 high grade but when they got in there to scrape the margins I also had stage 1 invasive cancer that was also high grade. I had a ultrasound guided core biopsy done in April 2008 and a lumpectomy in May 2008. In just 1 month from that core biopsy that stage 1 invasive cancer showed up, it scared me. I am now almost 3 years N.E.D but if I had to do it all over again, I would have gotten a mastectomy! The decision was so hard for me, now I regret just having the lumpectomy. Good luck to you and ASK A LOT OF QUESTIONS before you make up your mind about what you are going to do!

Lovegolf

I had DCIS in right breast only but decided on bital MX I do not regret it. I knew I was good for one big fight so I did that. It is so personal a decision and only you know how you feel and what is right for you.