Newbie: Dx Yesterday, Hoping for Friends and Answers
Good morning, all. Lovely morning here in the Colorado foothills, though today, with DCIS, just a bit different than before. Still, very grateful! Surrounded by loving friends and just about as prepared as I could be. You see, two dear friends are 5-year IIIb survivors. I've done a good bit of homework in their support and now, it seems, it has come in handy for my own benefit. It has certainly made it emotionally easier (of course, DCIS and IIIb are very different.) But when the doc said "DCIS" yesterday, it was just a matter of fact-gethering and moving forward. A few early details (path report copy is in the mail to me): Grade 2, cribiform, non-necrotic, no microinvasion. Forgot to ask size, and ER/PR pending.
Just hoping to make friends here and learn what I can. I've visited the board often and found much information already. Glad to now be a part. I have a meeting with my team (surgeon, oncologist, etc) on Thursday and would like to know the most pertinent questions to ask and why.
Here are some questions I have so far.
1. What factors predict DCIS's evolution to IDC (size, grade, hormone receptor, microinvasion, etc) and what are the latest studies on this?
2. Does prognosis differ between grade 1 and2? If so, why?
3. Hungry for stats on non-treated DCIS: (ex: __% recurrence @ __ yrs, __% progress to IDC @ __ yrs, etc)
Hope it's not too much to ask right off the bat, but any answers or links you have would be greatly appreciated. I look forward to learning. Thank you for being here. God bless!
Comments
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Hi Alpineartist, Sorry you have to join us here but at least you'll have lots of folks who have been in your shoes. I am one. I can not answer the questions you posted - hopefully there is someone here who can because I'd like to know those answers too. Cyberhugs, Janine
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Ooh, I'll take those hugs gratefully, Janine. -Peace & health to you!
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Hello Alpineartist and J9W. This is my first time posting on this website. I was diagnosed with DCIS on my birthday, April 5, 2013. I have done a little research as to the chances of DCIS becoming invasive and the numbers are all over the place. My dx is DCIS 9.cm, grade 3, non hormone receptive. I believe that it is a high grade that increases the risk of IDC. Since there is no breast cancer in my family and from what we know today I only have DCIS. But they could find something else after my surgery which is scheduled on June 5th. I have opted for a partial mastectomy on the right and breast reduction on the left side. My DCIS is 9cm long which is about 3 1/2 inches x 2cm. This is a large area of DCIS extending from my chest wall towards the nipple. At first, my surgeon wasn't sure that she would be able to do a partial mastectomy, but after additional MRI's and biopsies she is comfortable to do the partial mx. I also chose not to have any lymph nodes taken at the time of the surgery. I feel that this approach is the least invasive and if nothing else is found then it is 6 weeks of radiation and done. However, if they don't get clear margins or find an invasive cancer within the DCS like IDC then it's back to surgery, perhaps a mastectomy and chemo. I am totally petrified of the surgery, but totally comfortable with my treatment choice. It's important to weigh all of your options. For me, there is no breast cancer in my family and it is DCIS only that we know. I am willing to take the chance that this approach may not be the end of my journey, but I feel like I have to try. I will be truly devastated if this does not work even though I know that there is a chance of that. But still, how would I feel if I had a mastectomy, lymphnodes taken etc. and later found out that it was DCIS only? You still need answers to your questions, and you will get them through your own research and through your doctor or cancer treatment center. The waiting is the worst part about having cancer. Keep yourself busy until your appointment on Thursday. Make a list of questions for your doctor so you dont' have to leave anything to memory. Please please please take your husband or close friend or family member to your appointment with you. You will be getting a lot of information and it will be hard to remember things. Bring a notebook or pad to take notes too. You will meet your team and the whole appointment will be informative and overwhelming. I will check back periodically to see how you are doing. God Bless and stay positive!
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Hi Alpineartist, Hi Nancy - Sorry you have joined us and sending you both {{{{{hugs}}}}} and a little tear Nancy that you were diagnosed on your birthday. I see you've already heard from Beesie on your other thread -- she is wonderful and wise -- and her posts comforted me (and soooo many others) when we were where you are now. You will make lots of friends here, we've been where you are now and are happy to help.
I don't have answers to your questions, and I am a statistician, so definitely appreciate data. We all play the odds games in our head and have individual risk aversion levels. When I was diagnosed with grade 2 DCIS my early 40's (after first-ever micro-calcification cluster appeared on routine mammogram and stereo biopsy confirmed), my prayer was that there was no idc and I would move on to six weeks of rads after a lumpectomy. My bs was a conservative man who had me undergo genetic testing, an MRI, and ultrasound before proposing lumpectomy rather than mx (or bmx), and I have no family history, but he also told me that there is always a minor chance that some small invasive bc could show up in the final pathology report, and it would likely not change my treatment. See my bio, I was surprised (1.75 mm of grade 2 idc in final path report), so I underwent a sentinel node biopsy which thankfully was fine, and moved on to my rads as intended.
Please keep posting and wishing you the best. This phase is the hardest, waiting and worrying, but it gets so much better.
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Thank you CTMOM! I'm a CT Mom and Grandmom too. I am 52 years old and was completely taken by surprise by this dx. The medical professionals are so enthusiastic when they tell you that it is stage 0 and curable, but the reality of it is an agonizing complex process. The good thing that I've noticed from this dx is that cancer brings out the very best in people. And the outpouring of love and support is quite overwhelming to me. I cry at the drop of a hat these days, but mostly the tears come from gratitude of all of the blessings in my life. I am so happy that I became a member on this site. I know that not one of us want to be in this "club" but here we are and we have each other and so much support and shared knowledge. Thank you for sharing your story with me. I'm going to take my calculated chance on a successful outcome of my treatment choice and I just hope that my plan is God's plan too. If not, I will face that issue when or if it arises. I will continue to share my experiences here so that others can learn from my choices and treatments. Thank you again for your support :0)
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Alpineartist, you are asking all the right questions but unfortunately medical science doesn't yet have all the answers.
1. What factors predict DCIS's evolution to IDC (size, grade, hormone receptor, microinvasion, etc) and what are the latest studies on this?
Factors thought to be significant in the progression of DCIS to IDC include grade, presence of comedo necrosis, size of tumor, the genetics/biology of the cancer, possibly focality (single focus vs. multiple foci), possibly hormone receptor status, possibly age of patient....
ASPN and GJB2 Are Implicated in the Mechanisms of Invasion of Ductal Breast Carcinomas 2012
Silencing of HSulf-2 expression in MCF10DCIS.com cells attenuate ductal carcinoma in situ progression to invasive ductal carcinoma in vivo 2012
ER81 Expression in Breast Cancers and Hyperplasia 2011
Breakthrough Method Predicts Risk of Invasive Breast Cancer 2010
Biomarker Expression and Risk of Subsequent Tumors after Initial Ductal Carcinoma In Situ Diagnosis 2010
Loss of Protective Barrier May Link DCIS to Invasive Breast Cancer 2008
Portraits of breast cancer progression 2007
Those are just some of the articles that talk about how DCIS progresses to become IDC and what the key factors or triggers may be. Obviously, this is a topic that is of interest to many doctors and researchers. The problem is that it seems that almost every study comes up with a different answer.
2. Does prognosis differ between grade 1 and 2? If so, why?
Generally speaking, grade 1 DCIS is considered to be the least aggressive and least likely to advance to become invasive cancer. This does not mean however that the prognosis is different for those who have grade 1 DCIS vs. those who have grade 2 DCIS.
All DCIS, whatever the grade and pathology, is pre-invasive and therefore no type of DCIS, no matter how aggressive, has the ability to move beyond the milk duct, either into the lymphatic system or into the vascular system. So if all the DCIS cells are fully removed from the breast and/or successfully killed off, then the prognosis is 100% survival. DCIS is the only breast cancer for which this can be said. And this is true whatever the grade or the pathology of the DCIS.
The significance of the grade comes into play only if some DCIS cells are left in the breast. DCIS cells that are grade 1 are less likely to survive, thrive, multiply and develop into invasive cancer, whereas those that are grade 3 and particularly those what are grade 3 with comedo necrosis are the most likely to survive, thrive, multiply and develop into invasive cancer. Grade 2 falls in between. This is why the risk of finding an invasive component, prior to the removal of the DCIS, is highest for those who have grade 3 DCIS. And this is why the risk of recurrence, if any rogue cells are left in the breast after surgery, is greatest for those who have grade 3 DCIS. And that is the real threat that comes from a diagnosis of DCIS... an invasive recurrence. But if all the DCIS cells are fully removed and/or killed off, the prognosis is the same regardless of the aggressiveness of the DCIS.
3. Hungry for stats on non-treated DCIS: (ex: __% recurrence @ __ yrs, __% progress to IDC @ __ yrs, etc)
There is not a lot of information about non-treated DCIS because most women who have DCIS at minimum have it surgically removed.
This study reported in 2011 looked at 14 women. 5 of the 8 women who went on to have surgery were found to have IDC: Outcome of long term active surveillance for estrogen receptor-positive ductal carcinoma in situ
This study from 2005 looked at 28 women with low grade DCIS. 39% eventually developed invasive cancer. Low-Grade DCIS Left Untreated Is a Life-Long Threat
There are also autopsy studies that suggest that as many as 15% of women who die are found to have undetected DCIS in their breasts. The conclusion often reached is that this means that DCIS is harmless and doesn't progress, but of course there is no way of knowing how long that DCIS had been present in the breast, or whether it might have progressed in the future.
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Here are a few general articles about DCIS that provide a lot of great information:
Diagnosis and Management of Ductal Carcinoma in Situ (DCIS) 2009
Status of Intraductal Therapy for Ductal Carcinoma in Situ 2010
Current Treatment and Clinical Trial Developments for Ductal Carcinoma In Situ of the Breast 2007 Although article is a few years old, it references a lot of DCIS studies that remain valid today.
Hope that helps, and isn't too overwhelming!
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Nice to meet you ladies. Learning more already. Thank you for stopping by to share. Prayers for all.
Kay
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Hello, unfortunately I can't answer your questions, but they are great ones to ask your team. I, too, am newly diagnosed....it was my Mother's Day present
. It's nice to know there is such a supportive group out there. I wish you the best with your treatment decisions. I have opted to go for bilateral mastectomies because I just want it all to be over and gone. I'm 53 and I'm okay with my decision, at this point it is a waiting game. My surgery is tentatively scheduled for 6/12. I love all the support that is out there, "cyberhugs" are great! I never thought I would be a member of this club!Good luck to you, I'm sure we will all be talking again soon!
Martha
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Thank you, Beesie. I shall gobble up your links for question 1. Much good insight on #2.
On your links for #3: I'd seen them both and the latter one raised one question.
I note that cases were low grade non comedo cases in the 1950's and 1960's. At that time, was not the only way to detect DCIS through palpability? Does not palpability usually denote a less favorable prognosis than mammogram-detected DCIS, now available? (And detection method seems to be of considerable importance.)
In other words, if lesions were palpable may there have been other problems which would affect these ladies' prognosis, but perhaps not similar ladies today whose DCIS is detected by mammogram? -
Hi everyone... I was just diagnosed on May 1st with DCIS, stage 0, Estrogen +, 2.5mm , grade2 .... (this info is from my stereotactic needle bx) I have undergone genetic counciling and the BRCA1 and BRCA2 testing which was negative thank the Lord! ( I have male breast cancer in my history which seemed to concern them greatly as to why I was told to see a genetic counselor) I chose to have lumpectomy only at this point which is scheduled for May 28th... I am told I will need radiation and will have to take the estrogen suppressor pill... (not sure which one yet because I haven't gotten that far with this whole thing yet) I have been through menopause and was coming out the other end.... I was feeling good... not so many hot flashes anymore and just felt good in general when a routine mammogram found this tiny cluster of microcalcifications that they needed to check out.... UGH! Life changing to say the least... I have been exploring these forums and like you all have been looking for people with similar circumstances to connect with.... I always felt that knowledge is power but I have to tell you after reading some of these boards, I think I am more confused than ever!!! I have come to the conclusion that although we may have similar diagnosis we are all different .... we come from different cities that may or may not have state of the art breast facilities and it seems treatment options, statistics ect... are all over the place....I am extremely confident in our breast center/surgeon so far... but although I am optimistic that what I have is curable, I am scared of the treatments and the effects that they will have on me (another thing that seems to be all over the place with each individual)and I am scared of the future.. We all know people who have died from breast cancer and we all know people who have survived it... I worry about getting cancer now in some other body part that is less treatable.... I know I have scoured these boards looking for reassurances that there is someone like me who is OK and hasn't had anything bad happen to them... I guess it's just the phase we are all in since we are newly diagnosed. Another topic I would like to address is how have you went about telling people? I now have a greater respect and understanding about how people who get chronic illnesses are feeling.... it never leaves your mind for more than just a few minutes at a time it seems.... looking forward to hearing your replies.... and sorry this post was so long!! Best wishes, blessings, prayers, and hugs to all of you!!!
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Alpineartist, your point about DCIS that was detected in the '50s and '60s being more likely to be a palpable lump, rather than calcifications, is really interesting. Perhaps today, since most cases of DCIS are detected earlier and as calcifications, the percent of low grade cases of DCIS that evolve to become invasive might be lower. Or perhaps it might take longer, on average, for the DCIS to convert to become invasive.
Personally, if I had a biopsy that showed grade 1 DCIS, I wouldn't hesitate to have it surgically removed. The fact is that when ADH - just a high risk condition, a lesser condition than grade 1 DCIS - is found in a needle biopsy, a surgical biopsy is usually recommended just to be sure that nothing more serious (DCIS or IDC) is lurking. ADH was found in my needle biopsy and my excisional biopsy ended up finding ADH, lots of high grade DCIS and a microinvasion of IDC. If ADH is usually surgically removed, I would think the same should be done with DCIS, even grade 1 DCIS. And when we think about other types of cancers - skin cancer, for example, or uterine lesions or polyps in the colon - the practice is to removed anything that appears suspicious. If it turns out to be a pre-cancer and not cancer, that's good news. It means that the patient dodged a bullet. So if someone knows that they have DCIS, even just grade 1 DCIS, I don't see the point of leaving it in the breast. Personally if I had good surgical margins, I would probably pass on rads and hormone therapy, but I certainly would have the surgery. Maybe that grade 1 DCIS never would have progressed to become invasive, but I wouldn't take that chance.
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Hello ladies,
I just joined this forum this afternoon while doing research on the intermittent sensation of internal itching of the breast, near where I had a partial mastectomy. My surgery was in Jan.2007 and have been clear on mammograms and check ups ever since. I'm going to see my doctor next week to make sure this is nothing. If anyone has had this sudden kind of "problem" several years after surgery and radiation, please chime in. I would appreciate any input. Thank you, and God bless.
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Mentorof2 - I had internal itching for years in my left breast (not BC breast). Nobody seemed too worried about it and my mammograms etc. were clear. Fast forward to March 2012 when I ended up having a mastectomy of the right breast and a reduction on the left to balance things out. I haven't had any itching since! My point is that this may just be something that happens or comes and goes and is not related to the cancer. Good luck.
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Beesie, thanks for sharing your story and knowledge. I'll certainly take your case and suggestions into consideration. If you don't mind, another question has arisen.
My mom died of Lymphoma. My younger sis is in treatment for Melanoma. Neither had BC, nor do (or did) any other close relatives that I know of. But Mom was adopted and I know none of her relatives or their histories. I'm told their cancers don't affect my BC risk but am reading that all 3 are under the BRCA family of mutations.I'd like genetic testing. If a carrier, my treatment & screenings may have to be modified, as carriers' DNA is suspected to be more prone to damage from radiation. Your comments? Thanks again.
Kay
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Hi Lunchlady61 - You have a great attitude and spirit. Telling people about your dx can be difficult. If you are working, you need to decide when or if you want to let any of your co-workers' know. You should look into FMLA to get some job protection. There should be a state FMLA and federal as well. You can contact your EAP or HR rep about this. They can provide you with the paperwork that you will need to compele. I know that when I began telling people that I had bc, either I would cry, they would cry, or we both would cry. It doesn't seem as hard to talk about bc as it is to tell someone that you have it. You might want to tell one friend and one family member and ask them to inform the people that you want to share your dx with for you. You can also have key people update your friends and family on your tests, appointments etc. for you. Don't be afraid to ask for help or accept help. It's a blessing for someone to help another and it is also a blessing to receive help. I was only at my new job for 10 months when I found out that I have bc. I am on probation for a year at my job. My one year anniversary is June 15th. So I don't yet qualify for any FMLA until then. Luckily, I am so close to my anniversary, i can use my vacation time and sick time for the time-being. I will reapply in a couple of weeks. Before I told anyone at my work, I found out what my rights were. Next, I told our senior administrator and then I also met with our senior partner personally as well. I asked the senior partner to inform our immediate staff and she did. Everyone was extremely supportive. For me, I need a plan. So I have my treatment plan, my home plan and my work plan. I have planned for everything I can think of. I have anticipated what will need to be done during my period of surgery and recovery and I have engaged my co-workers in taking on some of my tasks while I'm out. I have made detailed notes for them and will do the same at home. It keeps my mind occupied and makes me feel like I have control over something. Hope these suggestions help or give you some food for thought. We're all in this together and we'll help each other every step of the way....one step at a time.
Best wishes
Nancy
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Kay, I saw this thread on the Active List - now that you've updated your homone stats, you might find valuable information at http://www.tnbcfoundation.org/ The Triple Negative Breast Cancer Foundation is a good resource. Don't know if the DCIS is "different" when it's 3N, but just in case. All good wishes.
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Good Morning Ladies
I don't have answers, but one suggestion I would make - Buy an inexpensive tape recorder at Office Depot, Staples, or Walmart. I take this to all my Dr. appointments. My doctors do not have a problem with me recording, so I'm sure yours will not.
This gives me the opportunity to go back and listen to the drs as many times as I need.
You are not alone on this journey. We will always be here for you.
Take care of yourself.
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Great idea on recording doctor visits, Jstans. I use a phone app and it really helps.
As an update, we visited with the team yesterday and I have decided to do surgery. Just too much to gain with little risk. (Thanks, Beesie) We'll cross the rads/hormone therapy bridges if we get there. Will schedule for about 6 weeks out. Meantime, will up my game on healthy living (mind and body) to optimize cellular result, if at all possible. The genetics experts said that my sister and I are in the clear for BRCA. Her occurrence is later in life than most carriers and we have no other relatives with such things, or with breast, uterine, etc. And lymphoma is a whole 'nother thing. Future occurrences, of course, could change this, but for now we're ok. Thanks again, ladies!
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Thank you for your input Nancy.... I am fortunate that my job is not our main source of income and just went back to work about 5 years ago mainly just because I was bored at home and I needed something to do..... I am blessed. So if I would happen to not be able to work because of my bc I will be fine. I work only 4 hours a day and my hope is to be able to schedule my radiation treatments around my schedule..... I had my biopsy at 7:30 in the morning and was at work by 10:30 that same day.... I needed to keep my mind occupied so I chose to go to work. So as of this posting I am 4 days out from my lumpectomy.... I am feeling a lot better knowing they removed my cancer!!... I am sore, but it's doable.... if this is the worst it gets I think I will be fine. I had a wonderful (if that's a word we can use for this awful stuff) experience and I go to a great facility that takes good care of you.... they are angels!! Yesterday my surgeons office called with my pathology report and although I have to go over it more thouroughly with him they were just letting me know that they didn't find any invasive cancer and that my margins were clear!! Thank you Lord!! So I hope I am on the way to the next step of the journey which is radiation and the tamoxifin..... I take it one step at a time and conquer as I go!!! Love, prayers and support to all of you!!!
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lunchlady61 - Hooray for for no invasion and clear margins!!!!!!! That is music to the ears!!!!!!!!!!
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jstans - just letting you know that I'm thinking about you. I'll be leaving the hospital the day you go in. You will be in my prayers :0)
Nancy
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Thank you Nancyinct!! Today marks the one week date from my lumpectomy surgery... I can't believe how time flies! I'm still sore but it's getting better... I did have to go shopping for some new bras. I feel better in more of a sports bra type or one with no underwires. I go tomorrow for a check up with the surgeon and to go over my pathology report.. I read it on line but there was a lot of words I don't know! Sometimes I am finding that it is better to not do so much reading about all of this. Everyone has their own experience and diagnosis and treatment plans. I read a quote yesterday and it stuck in my head and I wanted to share: Your mind is a garden and your thoughts are the seeds. You can grow flowers or you can grow weeds!!! Too much thinking most of the time leads to negative thoughts, so I think I will just keep looking for all the positive in this and hope my journey is a short one....I know it has changed my life/thinking and hopefully I will find a new "normal". It feels better to know that I am not alone in this journey and you ALL have my love and support!!!
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lunchlady61 - so nice to hear from you! I am glad you are doing so well. I just love the quote that you shared. Fear seems to take over our thoughts but I'm going to recite that quote over and over to replace those thoughts of fear which are my weeds......I much prefer flowers :0) Have a wonderful day today and good luck at your doctor appointment tomorrow. ((((blessings and love)))) to you!
Nancy
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Hi everyone,,, my appointment with the surgeon went well... he went over the pathology report with me and it was all good! Good clear margins and he said I am done with him. Only a mammogram in a year. ( That will be scary) I now have 2 appointments next week with the oncologist who will prescribe my hormone treatment and the radiation oncologist who will be setting up my radiation.... On to the next step in this journey I guess.....Hope you are all doing well! As always you have my love and support and positive thoughts.
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lunchlady61 - Congratulations on the good results and best of luck with the next step. It gets easier from here!
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Update: Lumpectomy yield: downgrade from Grade 2 to Grade 1. 6mm, widely negative margins (>1Cm). Cribriform/micropapillary. Non-necrosis. No Grade 3 or IBC. Per oncologist, my risk for LR is 1% per year, so at 5 years, RT offers 2.5% better. -Too small a benefit for its risks. Will save it for later, if ever needed. When asked why MRI & post-op mammo were waived, surgeon "did not want to put me through more of this." Such candid opinions are apparently sadly rare in today's litigious climate. But from this statement one can safely deduct that any additional foci would be safe to wait and watch as well. It causes me great curiosity as to whether the focus which was removed was of any real concern either. I'm considering a final second opinion from Dr Michael Lagios (St Mary's San Francisco) on all reports. What if this was not cancer at all?
I'm at once humbly grateful of such a low-risk dx and frustrated at this trial. But science is imperfect. Sometimes diagnostic tech oupaces prognostic tech, resulting in frustrating under-and over-treatments. DCIS is a group of diseases which ideally one day will have risk levels and appropriate treatments for each. Until then, women must navigate these dark waters as best they can, without adequate studies providing accurate risk data or treatment advice. In essence, those who choose less and less treatment "become the data" or as one of my nurses called us, "pioneers." I'd rather no such designation, but it is what it is. All I have is raw science (hystology, oncotyping, etc.) and for now, this will have to be enough.
Edited for update: Oncotyping finally in. Onco score: 13. 10-yr Risk of invasive: 4%. Just in case anyone needs this information.
I wish each of you ladies long life full of beauty and joy. God be with you as you sail these waters alongside.
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