Diagnosis DCIS so many questions!

MWShannon- don't like to see you hanging with no responses. With DCIS, the common fear is that you are over-treating, ie only some DCIS progresses to invasive cancer. However, Grade 3 Comedo Necrosis is a definite call to action, no ambiguity. In a strange way, I find comfort in my own DCIS Grade 3 palpable lump diagnosis, with lumpectomy, radiation and hormone therapy - I don't feel I overtreated and I feel extraordinarily lucky to have caught it when I did - and so should you. If your cancer cells are ER positive then you would benefit from hormone therapy, but usually those decisions come after surgery. With regards to HER2 status, when you have pure DCIS the test is not usually done. The amount of micro-invasion might be key in making the decision about the HER2 test. Look for postings on the DCIS board by BEESIE, her explanations are clear, informative and accurate and I believe she addresses micro-invasion. 

Bring someone with you if you can, to your appts with the surgeon, take notes, and ask for copies of visit and test results ie everything. There will be too much information for one frightened person to absorb. 

Sorry you are going through this, but we will see you through. 

Julie E 

Hi,

Please don't worry too much, the success rate with DCIS is almost 100% and, although it is very frightening to be told you have DCIS, it is very treatable.

I was diagnosed with DCIS end of April this year, 10 days later had a wide area excision, following week I was told that the margins weren't clear enough and would need the operation repeated.  My histology report also showed that behind the Grade 2 diagnosed when the original biopsy was taken was some Grade 3. 

My surgeon was brilliant and ensured that the margins were very clear during the second operation (my DCIS was diagnosed following a regular mammogram where calcification showed up but as there is no tumour the removal was based on the calcification).

Because I had Grade 3 I am now having daily radiotherapy for 4 weeks.  I was given a choice of either 6 weeks or 4, basically the same radio dosage but over a shorter period of time as both options gave exactly the same end results. The risk is that my side effects may be slightly higher with the four week course but I decided it was a small price to pay for not having to go to the clinic every day.

Now through the second week and all going well.

I know it is a real worry when being diagnosed but if you are going to get any kind of cancer then this is the one to have.  It still is 'in situ' and if part of your treatment involves radio this will knock out any cells that may be floating around. 

Please also remember that from now on you will be closely monitored so if anything shows up at any time you will be treated early.

I wish you lots of luck and please feel free to keep in contact as things progress.

Kindest regards, Debbie

Don't take any diagnosis for granted.  Make your doctor move quick  and to be aggressive with the cancer there are so much variable.

 Here is my wife's story.

My wife finally got to see the breast specialist late February for a bloody discharge of the the right breast.  The doctor told us that is was not much of a concern but a small surgery was needed to resolve the issue.  My wife had surgery on 3/17 of this year and when the pathology report came back it was positive for step 0 DCIS. No tumors has been found to date, only cells.  Still we were assured that problem was caught early enough and the her life was not in danger.  A follow on lumpectomy showed positive margins for more DCIS and a mastectomy on 6/23 followed.  As you can see 3 months passed since the Mastetomic.  This was because the doctor kept reassuring us that the cancer was contained and there were no need to rush things.  The biopsy of two sentinal nodes, shows one as being postive for micrometastates scattered cells in the subcapsular sinus, invasive cancer were not identified.  The doctor is still in disbelief in the results and want a second pathologist to look at the samples.  The doctor even wants to take my wife's case to the Medical Board of the Armed Forces for additional opinion.  Nevertherless, my wife will probably need chemo and/or hormone theraphy as her receptors are positives.

As you can see, something that was diagnose as step 0 cancer, could now be step IV after follow-on surgeries and biopsy.  This is because the cancer can be further down the line from where the first sample was taken.     Now we feel, that we should had had a mastectomy right away, instead of going through the lumpectomy, but this is a personnal opinion and hindsight is 20/20.  If we could do everything over again, and knowing what we know,  we would have encouraged the doctor to check the lymph nodes first, as they are considered the last line of defense before the rest of the body is affected. 

nwshannon- As you can see, everyone's experience with breast cancer can be wildly different even starting out with the same diagnosis.  There are so many variables with this disease and so many treatment options.  I would say just try to educate yourself as much as possible by going on reputable sites only.  (This one and the American Cancer Society are the best, in my opinion.)  Find a medical team you feel completely comfortable with and ask a lot of questions.  Then, ultimately, it will be left to you to decide how you want to treat your DCIS and a lot of the decision comes down to what your gut tells you to do after all that.

There are many women who have had lumpectomies and radiation and feel comfortable with that decision.  Others know they would worry too much the rest of their life about recurrence and, therefore, choose mastectomy or bilateral mastectomy.  Some choose to take Tamoxifen, or other drugs, for 5 years after.  It is probably one of the few diseases where so many decisions are truly left up to the patient to decide.

For me, I was quite small breasted and my first lumpectomy did not get clear margins.  A second larger lumpectomy was going to take about 25-30% of my breast.  Combine that with the effects of radiation on my skin and reconstruction would have been kind of tricky and then I knew I would still worry about recurrence in the other breast.  I opted for a skin-saving, nipple-saving bilateral mastectomy.  I eliminated a lot of the risk but still got a good cosmetic outcome which I felt was a good compromise for me.  

A diagnosis of DCIS can feel like you need a crystal ball because no one can predict if or when it would ever become invasive.  Some women have had DCIS their whole life and never knew it (based on autopsies after death) and others, like Roberto's wife above, have their DCIS become invasive rather quickly.  Whichever way you go, you will find amazing support on this site from many women.  Good luck! 

nwshannon, it's completely normal to be scared when you don't have all the information about your diagnosis. Everything is a possibility and it's normal for our minds to focus on the worst-case scenarios.  But in almost all cases, it doesn't turn out to be as bad as we fear. 

I won't go over everything from your pathology report - sweatyspice already did a great job at that. From your pathology report, what you know so far is that you have high grade DCIS with comedonecrosis.  This is the most aggressive form of DCIS, but it is still DCIS - it is still non-invasive cancer.  So once it is all removed (through surgery) and/or killed off (with post-surgery radiation, if you have a lumpectomy), then your prognosis will be no different than anyone else who's had DCIS.  For those who have DCIS who don't have a recurrence (in the form of invasive cancer), the survival rate is 100%.

What you also know is that you may have a microinvasion.  When I had my excisional biopsy, a microinvasion was found, along with about 3 cm of high grade DCIS with comedo necrosis.  Because I'm small breasted, because such a large amount of breast tissue had been removed during my biopsy, and because all the margins were dirty (in other words, there were cancer cells right around the edge of the removed breast tissue, indicating that there probably was quite a bit more cancer still in my breast), I had no choice but to have a mastectomy.  I decided that I wanted immediate reconstruction, which meant that I had to change hospitals and doctors, plus I had to consult with the plastic surgeon and then both doctors had to coordinate their schedules for surgery.  In the end, I waited almost 3 months between my excisional biopsy and my mastectomy and it was 4 1/2 months from my first stereotactic biopsy (which was inconclusive) to my mastectomy.  Yet when I got the pathology report from my mastectomy, while it showed that there was a lot more high grade DCIS with comedonecrosis (I had over 7cm in total), there were no more microinvasions and my nodes were clear.  Most doctors will tell you that waiting and delays are not a problem for those who have early stage BC, such as DCIS.  My surgeon had told me that, and in my case, he was right.

If it turns out that you do have a microinvasion, this will change your diagnosis.  Pure DCIS is Stage 0.  With a microinvasion, you move up to Stage I.  But having had a microinvasion myself,  I can tell you that if all you have is one or two microinvasions (microinvasions are 1mm or smaller in size), the treatment plan will be no different than if you have pure DCIS, except for the fact that your nodes will need to be checked - you will need to have a sentinel node biopsy (which a lot of women with pure DCIS have anyway).  Similarly, your prognosis will be hardly any different than if you had pure DCIS - the long term survival rate for those who have DCIS with a microinvasion isn't 100% as it is for those who have pure DCIS, but it's 98% - 99%.

If you have more invasive cancer than just a microinvasion, or if you have nodal involvement as a result of a microinvasion, those are the only scenarios that would change things.  This could happen but the odds are in your favor that it won't.  Of those who are initially diagnosed with DCIS via a biopsy, approx. 80% have a final diagnosis of pure DCIS.  The remaining 20% are found to have some invasive cancer, but in about 80% of those cases (around 15% of the 20%), it's only a microinvasion.  So hopefully you won't be in the small group that has anything more (as Roberto's wife does).

Prior to your biopsy, did you have an MRI?  Or if not, has your doctor discussed the possibility of an MRI now, before your surgery?  My surgeon insisted that I have an MRI before surgery and I found it to be very helpful in my decision making.  The MRI showed that my breast with BC was full of "stuff".  My surgeon couldn't say for sure that it was more DCIS but we both were pretty sure that it was.  The MRI showed that my other breast was completely clear.  So this helped me accept that I needed to have the mastectomy (I would have had a lumpectomy if that had been an option) and also helped me decide to have a single mastectomy rather than a bilateral.  I saw no reason to remove my healthy breast and thanks to the MRI, I was confident that it was healthy.

There are a couple of older posts, one that I wrote and one that someone else complied with information from some of my posts, that I will bump up to the top of the list of posts here on the DCIS forum.  It's just stuff I've learned over the years about DCIS, but keep in mind that I'm just a patient and not a doctor and it's your doctor who is your best source of information.  However these posts might help you understand more about DCIS and may arm you with questions to ask your doctor on Thursday or later on during the process.

Also, here are a few links to websites with good information about DCIS:

http://www.dcis.info/

http://www.breastcancer.org/symptoms/types/dcis/

http://www.imaginis.com/breast-health/ductal-carcinoma-in-situ-dcis-3

I hope that helps!  And good luck on Thursday.  I hope you get all your questions answered (or as many as can be answered at this time!).

nwshannon-  Good luck with your MRI.  Am sending positive vibes your way!  Keep us posted!

Roberto487- It never hurts to get a second opinion.  I think it is great you are getting so involved.  My husband made all of my appointments, phone calls, took care of all the medical bills and went with me on every appointment.  It made such a difference and took a lot of stress off me.  I am wishing your wife good luck and healing thoughts as well.  Please let her know, if she is not already posting on here, that this site is a great source of emotional support as she goes through this.  The women on here were such a lifeline for me as I was recovering.

Kate 

The information posted here has been great!  Because everyone is so individual based on family history and his/her specific diagnosis, it is never a good idea to do something because someone else did it for something similar.  Finding one or more competent specialists to help in your decision making is critical.

As for me, I had DCIS left breast, ER+,PR+, Grade 1 in Sept 2008.  Based on the diagnosis, you might assume I only had a lumpectomy and called it a day. However, my mother died of breast cancer mets 7 years after her diagnosis with invasive breast cancer and within 3 weeks of recurrence.  Her mother and her mother's sisters all died of hormone cancers.  Genetic testing showed no known genetic abberations, but the genetics counselor said there is strong possibility that our family might have a genetic abberation that hasn't been discovered yet. 

Based on this strong history, I opted for lumpectomy, radiation, AND Tamoxifen. The breast specialist surgeon and oncologist both supported this treatment plan.  I am glad I did this, because a little more than a year later, I experienced nipple bleeding in the cancer breast.  It was unclear whether it might have been more cancer, but it turned out to be a papilloma after surgery and the excised tissue also showed ADH (often a precursor to breast cancer).  However, the oncologist advised that the Tamoxifen should prevent it from morphing into cancer.  I have already decided should I have a recurrence, I'm going to have a double mastectomy.

It's all a pot shot based on your efforts to find out the most you can about how to treat your particular situation.  You just hope you chose the right pot.

Good Luck!

Regards,

Jo Ann

I am 39, a year ago today I had my biopsy for DCIS. I cannot tell you how terrible of a time it was for me. I had all of your fears and then some. I lost 20 pounds in six weeks waiting for my surgery. I spent endless nights on the computer searching for things that might suggest I would not have positive nodes or invasion. I worried and was literally sick from all of it. A year later, I would not go back to that time in my life for a million dollars. I wasted a ton of time and as my husband said, time I cannot get back worrying about something that never happened. I had my surgery 9/1/09. Clear nodes, no invasion. I did double mastectomy because I am not one for testing.. I did not want to go in every six months for mammos, blood work etc. It is a personal choice and for me one that I do not regret one single bit. I still have worries. My back hurts now and I go to the place of did they miss something. If you need to talk PM me. I am your same age and I can so so relate to how you are feeling.

xxoo

Nancy

nwshannon - don't get ahead of yourself.  You wrote that you hope the microinvasion is small, but there's NO EVIDENCE THAT YOU EVEN HAVE A MICROINVASION.  Your surgeon, rightfully, is mentioning it as a possibility.  And you, reasonably, are terrified.  But please don't just assume you have one, because most likely you don't.  Even if you do, the treatment will most likely be exactly the same.

nwshannon- Just remember that, even with DCIS, the choice in how to treat it is up to you, not your doctor.  Women have treated it with lumpectomy, lumpectomy with radiation, lumpectomy with radiation and hormone therapy, mastectomy, bilateral mastectomy, nipple saving mastectomy, mastectomy with hormone therapy, etc, etc etc.  This is YOUR choice and you have to do what is right for YOU!  Many women have chosen mastectomy for the very reason you stated- they did not want to walk around scared forever.  You can see ten different doctors and probably get ten different recommendations but, ultimately, it is your body and your decision.  Good luck!

nwshannon,

The news from your surgeon is great!  A 5mm area of DCIS, even if it is grade 3, is very small.  And, as sweatyspice said, at this point, there is no evidence of a microinvasion, although your surgeon is rightfully mentioning the possibility - a microinvasion is possible for anyone who has high grade DCIS.  The fact is however that usually there isn't a microinvasion, particularly if the area of DCIS is as small as yours seems to be.   With a tumor size this small, hopefully your surgeon will able to get good wide margins when you have the lumpectomy, and that in turn will leave you will a nice low recurrence risk.  A low recurrence risk is ultimately the objective of whatever surgery and treatments we have. 

The only thing that I wonder about from your discussion with the surgeon is whether the SNB is necessary.  I'm not saying it's not, but it's certainly something you should consciously decide on before you head into surgery.  With pure DCIS, cancer cells cannot move to the nodes, so the SNB is being done only as a precaution, in case a microinvasion is found.  But because you are having a lumpectomy, if it turns out that there is a microinvasion of IDC, the SNB can be done later.  So by having the SNB with your lumpectomy and before it's known if you have a microinvasion, you are exposing yourself to the risk of lymphedema, possibly for no reason.  And the problem with the risk of lymphedema is that it is a risk that stays with you for life.  And should you develop lymphedema, it's a condition that would stay with you for life.  So there's lots ot consider.

We got into a discussion about the need for SNBs with lumpectomies for DCIS a few months ago.  I will dig out that old thread and bump it up for you.