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melli119
melli119 Member Posts: 4
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I was diagnosed recently with DCIS in my left breast.  While I completely understand the fact that this is an easier form of breast cancer my treatment options have changed dramatically based on the pathology.  I have high grade with central necrosis, not comoedo (I'm sure I spelled that wrong) and lobular extension.  It is also HER2 3+.  I feel like after reading this forum and other sites that I have a clear understanding of my diagnosis.  I am fairly sure I want to do a bilateral mast. because I have very dense and cystic breasts, the right breast ironically is the reason I even began this process.  The calcifications were found in my left breast. 

 There is so much about this that scares me but the largest is that it is high grade and HER2 positive.  I feel very at peace with the decision to do the mastectomy.  I realize that after they check the sentinal node, I very well could end up with radiation and chemo but I guess I am hedging my bets that a bi-lateral will eleviate the need for any further treatment.    I met with the radiation oncologist today and he said certainly I am justified in my thoughts to lean towards a mastectomy. However, he also said that I am an excellent candidate for lumpectomy and radiation.  I understand that my success rate for recurrance is the same for either surgery, obviously the lumpectomy is the least invasive. 

How much merit/concern should I place on the high grade status and HER2 positive diagnosis in determining my decision? While my right breast is cystic, it will make it more diffiult to diagnose and that too factors into my decisions.  How much should it?  I know cysts are not cancer, but now that I am facing it, it will always be in the back of my mind.

Any thoughts?

God Bless you all as we embark on this journey.  My faith and family will keep me strong.

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2011

    Hi melli!  Sorry that you've had to join us but I'm glad that you've found us!

    HER2 status is a big factor with invasive cancer.... but based on current medical knowledge, it doesn't play into DCIS.  There are a number of reasons why this is the case.

    • First, the few studies done to-date on HER2 status for DCIS have had conflicting results.  Some show that HER2+ DCIS is more aggressive but others show that HER2+ DCIS is actually less aggressive.  All the studies have been small so there simply isn't enough information to draw any conclusions. 
    • Second, HER2+ status can change.  So HER2+ DCIS, if it evolves to become invasive cancer, might not be HER2+ IDC.  This is actually true of all hormone status. Hormone status can change as breast cancer evolves, first from DCIS to IDC, then from local to metastisized.  This is a pretty important piece of information yet it's hardly ever mentioned.
    • Third, a lot of DCIS is HER2+ whereas a much lower percentage of IDC is HER2+.  I've read studies that suggest that anywhere from 40% to 60% of cases of DCIS are HER2+ but I believe that only about 20% of cases of IDC are HER2+.  No one seems to understand yet why this is, but it suggests again that either the HER2 status changes as DCIS evolves to become invasive, or HER2+ DCIS is less likely to become invasive.  In any case, it means that it's not unusual to have HER2+ DCIS. 
    • Fourth, there are no approved treatments for HER2+ DCIS.  There are a couple of clinical trials underway with Herceptin (small dose as compared to what is given for invasive cancer) but at this point in time Herceptin is not approved for women with DCIS.

    As for the grade of your DCIS, having grade 3 DCIS does mean that there is a greater risk that when your final surgery is done, some invasive cancer might be found.  Generally about 20% of women initially diagnosed with DCIS are found to have something more serious than DCIS once their whole area of cancer is removed. For those with high grade DCIS, and particularly for those with comedonecrosis, the risk is greatest. Most of the time when something more than DCIS is found, it's just a microinvasion (as I had), which doesn't change the treatment plan and barely changes the prognosis.  But in about 5% of cases, the diagnosis can change greatly.  So having high grade DCIS does present a greater risk of what you might find in your next surgery.

    However if your final diagnosis is pure DCIS and if all the DCIS is removed with good margins and/or killed off (with radiation), then after surgery the grade really doesn't matter - the prognosis is the same.  All cases of pure DCIS, regardless of the grade, regardless of the amount, regardless of whether there is comedonecrosis, are Stage 0.  It's Stage 0 because DCIS, whatever the grade, cannot leave the breast or travel into the body. 

    A couple of other points:

    Radiation:  Usually radiation isn't required after a mastectomy for DCIS, but if the margins are positive or too small (<1mm), radiation might be required even if you have a mastectomy.  Just something to be aware of. 

    Chemo:  If it is found that you have invasive cancer in addition to the DCIS and if the invasive tumor is aggressive and/or of a particular size, or if you have invasive cancer and nodal involvment, you may require chemo. Having a mastectomy won't change this.  Chemo addresses the risk that some invasive cancer cells may have escaped the breast and moved into the body prior to surgery.  Therefore because chemo is used to treat risks beyond the breast, whether you have a lumpectomy or mastectomy doesn't change whether or not you need chemo.

    Good luck with your decision.  With a diagnosis of DCIS and with dense, cystic breasts, certainly it makes sense to consider having a bilateral mastectomy.  But choosing to have a lumpectomy with radiation based on your DCIS diagnosis is also a reasonable choice.  So get the facts, understand the risks and implications and long-term effects of both procedures, and make your decision based on that.   

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  • melli119
    melli119 Member Posts: 4
    edited October 2011

    Bessie, thank you for your reply.  The combination of Grade 3 with HER2 has me completely freaked out.  What is the difference between "comedonecrosis" and central necrosis or is it the same?  I know they are also going to check lymph nodes when I have whatever surgery I choose but given how nothing so far has been easy, I am prepared for it to be the worst.  Hoping not.  Hopefully I can have surgery and treatment and be done but the nodes are weighing heavily.  I know I can get through this, it is just such a lot of waiting and such a LONG drawn out process. 

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  • Iz_and_Lys_Mum
    Iz_and_Lys_Mum Member Posts: 126
    edited October 2011

    Hi melli



    I dont have much to add to all that amazing info from beesie, but just wanted to say hi and i hope you find this forum as helpful as i have. Best of luck with everything



    Xxx

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  • melli119
    melli119 Member Posts: 4
    edited November 2011

    Thank you for your reply,  lz and Lys Mum.  I have an appointment with a plastic surg tomorrow and then I am desperately hoping I can move in a forward direction.  It seems like time has stood still in regards to this whole situation but then is still moving around me.  Did you do a lumpectomy or mastectomy?  I am pretty sure I will be doing the BMX (I think that is the proper abbreviation) reconstruction but I just have this nagging dread that the nodes will come back positive and I will wake up with no breasts.  I know it probably won't happen but it just lingers out there now because I was told it was a possibility.  Remote possibility but still a possibility.  It is overwhelming the number of things you have to think about.  I started reading pieces of Dr. Love's Breast Book and it has made me very nervous about the surgery but really validated my resolve to go with the BMX. 

    Thanks for listening.  I hope things are going well for you.

    (((hugs)))

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  • Iz_and_Lys_Mum
    Iz_and_Lys_Mum Member Posts: 126
    edited November 2011

    I had a lumpectomy to start with. The tumour was quite big (6.3cms), so i was offered either radiotherapy, or a mastectomy. I chose a mastectomy mostly because I have two small children (2 and 5 when i was diagnosed) and I just didnt want to have to go through it again by risking recurrence.



    I'm just over a year out now and about to have surgery to finish up the reconstruction. It's been a long year, but ultimately I'm really happy with my decision and haven't regretted it. It does get easier. My surgeons have been great, and helped me with all the decisions. There is a LOT of info around and it can be pretty scary. I banned myself from googling anything two days after I was diagnosed, but I wish I'd found this forum sooner!



    I hope everything went well today, and that its all a bit clearer for you. Please let us know how you got on



    Lots of love xxx

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