DCIS facts and misconceptions

Shayne

At the bottom of my path report - it said the grade wasnt determined yet and would be on an addendum......which means i have to call the BS office to get the info - the secretary is not very on the ball.....had to ask her 3 x to send report to my MO!  will call tomorrow and report back.

marie5890

Bumping for LCM-----

1boob

I didn't see my breast surgeon as planned because my husband with 3 different cancers got very ill. But he said I could put it off till August, as long as nothing particular was bothering me. So I will go then. Have made the appointment. I think that he just took out the 5 lymph nodes to be sure. I am uncertain if it was possible to test when I was under the anaesthetic. I do know he probably thought I had invasive cancer hot spots, because the DCIS was so large. I am a bit miffed about the lymph nodes but will have to find some way of not being confrontational with him. He doesn't bring out the best in me. But it's good to know the margins are good. Thank you, Beesle. Perhaps I will do the sandwich technique - thank you for lovely margins followed by why did you take out my lymph nodes followed by nice scar!!

1openheart

Sandwich technique....so that is what it is called....  I've done that many times when I have to say something unpleasant, but I did not know it had a formal name.  

akinto

1boob--Here in Ontario, Canada, we have a screening programme. It provides mammograms to every woman between 50 and 69 no matter what her doctor orders. You can just go.

 Now that I have had breast cancer, I am no longer eligible for the screening programme. I am past screening. We are on to surveillance, and the frequency of tests will be determined by my oncologists and primary care physician, not by the regular screening programme.

I don't think you will be back in the regular pool of 3 year checkups unless the UK is very different.

Beesie

Bumping for some of the newbies who've joined the DCIS forum.

maize

Beesie, you are a wealth of information.  It seems that in some cases the doctors do not explain things in enough detail to patients, maybe because they do not realize that some patients don't really understand exactly why certain procedures are done and what the short and long term ramifications are for different types of treatment.  In my case, I had little time to study it and to make a decision about surgery.  I didn't know anyone who had been diagnosed with DCIS and was not aware that this site exists.  There is a lot of anxiety about the possibility of making a decision that leads to harm down the road, harm that might've been avoided if you'd had more information beforehand.

I appreciate you explaining the reality about mastectomy. 

Shayne

Its all so confusing after dx.  I dont think I heard most of what the docs said in those first appts.  And didnt know the questions to ask.  On top of being afraid to read in depth of what I had.....

maize

Shayne,

I agree.  First, all you really hear is that you have cancer, the dreaded cancer women fear, and you're so stunned...the mind goes blank.  When the doctor showed me the microcalcifications on the screen, I didn't know what they were, what caused them.  I asked if the microcalcifications were the cancer and the doctor said "No."  The doctor may've thought: "This woman's an imbecile."

I didn't want to know about breast cancer.  I never wanted to read about it.  There were sad experiences involving people in my life in the past who had breast cancer, in the more distant past, who died, but I want to emphasize that they did not die recently. They were treated for breast cancer years ago and there are more options available now and people are surviving.  I also lost an adopted brother to leukemia and a friend to Hodgkin's lymphoma years ago.  My childhood "very bestest friend" also died of leukemia.  If they had been diagnosed today, with the current treatments that are available, I think there's a possibility that they would still be here. Being diagnosed with DCIS recalled all that grief.  I don't apologize for having fears or anxiety about cancer.

I had only vaguely heard of DCIS.  I didn't know what questions to ask, except: "Will I have to have both breasts removed?", "If I have to have chemo, will I vomit all the time and not be able to function?"  

Shayne

dont apologize.......I still have cancer fears......

Infobabe

maize

 

Aren't microcalcifications evidence of the metabolic process of the irregular DCIS cells?  There were none in my DCIS.  I wonder what that means.  I did have microcalcifications about 8 years ago that were benign.

maize

Shayne,

An oncologist told me that if my brother had been diagnosed later in time, he would probably be living.  The doctors tried. I guess there have been advances in treating that type of leukemia and now kids who get it can survive and thrive.  There have been advances with breast cancer, too.  My friend who died of leukemia died as an adult.  I have always wondered what caused it.  My friend who died of Hodgkin's worked in radiology as a tech and died at age 25.  Apparently, many people who get Hodgkin's do survive.  He just didn't happen to be one of them and I don't know why.  The people in my life who died of breast cancer were diagnosed years ago and, in one case, the cancer was advanced, it had metastasized, before it was even discovered. It's good to know that there have been advances in cancer treatment and in detection.  I did find out that people who need chemo don't vomit all day--that there are medications to treat the nausea.  One night, I realized that my fears were in part based on the past--that was causing such anxiety and sadness.

Infobabe,

I don't know if I've got it right, but I think the microcalcifications are a result of calcium depositing on dead cancer cells.  To me, microcalcifications can mean that the body did manage to kill off some of the abnormal cells.  The doctor said that the microcalcifications were not the cancer (the DCIS) itself.  He also said what you said--that you can have microcalcifications that are not from cancer, but are benign.  He said when they are clustered they suspect DCIS.  I had to have three biopsies.  I was so freaked out that I don't think I fully understood what was being said.  I walked out of there kind of "shell-shocked".

Another doctor wrote that DCIS and microcalcifications are cellular debris from a battle going on in the body originally due to a metabolic or hormonal imbalance, and he did not think that it is always cancer--that doctor wrote a book about it.  He seemed to think it should be treated with hormones (progesterone?) unless it is  high grade (clearly undifferentiated cells), but if it is high grade it should be removed surgically.  The specialists have differing opinions about how to treat DCIS.  They all seem to agree that high grade DCIS needs to be removed surgically "in a timely manner".  He said that unless the original imbalance is corrected, the DCIS will inevitably return. I do not know who is right or wrong among these doctors.

Shayne

I also had microcalcifications.  5 or 6 spots - they removed them during biopsy, and the surrounding tissue did not show cancer.  Ive read the same thing as you Maize on what they are.  

I also had a brother who died of leukemia, before I was born in the 50s.   

New-girl

I am hoping yall can help me understand my situation.  I went for my regular checkup one year ago with a strong concern for my right nipple inversion.  My ob/gyn was unconcerned even though he did take a speicman of my discharge from the nipple.  My mammo came back fine.  In early January I found a lump in my right breast ( same one with nipple distortion).  I immediently sought out another doctor to check.  On the day I saw a new ob/gyn she sent me to receive a needle bio, and stero bio , numerous sonos and more mammograms.  I got the news the next day that I had DCIS in the right breast and LCS in left.  At first appointment with BS she scheduled said although I was grade 1 the extent of DCIS was extreme with "gross distortion" of the breast.  I decided on a BMX with DIEP reconstruction.  BS assured me she would only be removing Sentinel Nodes to test.  I know she was expecting the worst and prepared me for chemo and radiation.  After surgery, she held to that she had only removed 3 sentinel nodes.  I need to add that this is a very highly regarded BS and considered excellent in her field.  I started suspecting something was amiss when it seemed that path reports were very slow coming.  One week after surgery, she told me that everything was excellent and they were so happy with reports.  I had a .6 tumor as well as a .8 tumor in the right breast .  The left was said to be Invasive Lobular Carcinoma.  I had many test done and sent to labs that seemed to hold up what treatment I would need.  After one month the onc said I did not need chemo or rad just wanted me on Tamoxifen.  Oh and I also found out after one month that I had 12 lymph nodes removed from my right side and 4 from my left.  BS explained that they were intertwined with breast tissue and could not be separated.  Seriously?  I was beyond upset.  Haven't been back to see her since.  So my question to yall is how do I find out what I actually have?  My path report says I have Invasive Ductal Carcinoma in right and Invasive Lobular Carcinoma in left.  But BS never changed telling me I have DCIS?  Sorry so long and rambling but I cannot seem to get answers from the doctors.

Infobabe

grt42btexan 

I think you have to believe the path report.  You could also have DCIS at the same time.  But you have done the prudent treatment of the BMX so I wouldn't worry. 

BLinthedesert

 grt42btexan  

 If you are not happy with what your team has told you, you need to find someone you DO trust.  Get a second opinion, your insurance will cover it.  I am concerned that you have heard conflicting information and you deserve to fully understand your pathology report and your treatment plan - and if you don't feel satisfied that your current team is expaining things to you, you need to find a team that does.  I am surprised that you have not met with a radiation oncologist, and I am surprised that so far all of your medical team has told you conflicting things.  A diagnosis of IDC and ILC is not to be played with.

Good luck, rest and recover from your surgery. 

New-girl

I guess I am just second guessing what I did.  As I get so freaked out by the lymphedema stuff and mourn the loss of my breast, I wondering if I should have sought more options.

BLinthedesert

You can't do that grt42 ... you have to make peace that you have done what you needed to save your life.  I am more concerned with you feeling like you understand your diagnosis, exactly what was done, and what your future risks are.  It sounds to me, that with both IDC and ILC (and no cancer found in the lymph nodes), you made a very wise choice.  But you need closure and peace, and you need/deserve a medical team that can give you that.

Gentlest of hugs. 

Shayne

getting some answers, understanding your path report.....will give you some peace with your decisions.  Thats why its disturbing you.  Find a good RO or Oncologist that you can trust, maybe a recommendation from someone you know.  And make them sit with you until you are satisfied you have all your questions answered.  A good doctor will do that!  We really only have ourselves to be advocates for our health care!

New-girl

Thanks.....I think I need to find a good doctor that will patiently explain everything that has been done.  I do not regret my choices as much as I just want to understand everything better.

Shayne

There are great doctors out there, who will sit down with you.  Before I was dx, I had a doctor at a radiological place sit down with me and explain the findings of my mammo/us.  He was very kind, Ill never forget that.  I really need to send him a card.

Mooleen

When I had my UMX in February, the BS told me he took 5 or 6 lymph nodes. When the path report came back no one was more surprised than the BS that there were 22 nodes, just about all of them. Whoops! This upsets me in that I will for the rest of my life have to worry about lymphadema and I think it could have been avoided. In two prior surgeries, no nodes were removed and a SNB was never mentioned. I didnt even know what a SNB was then. Nothing I can do about it now except be proactive in doing everything I can to prevent it. All 22 nodes were clear, thank God.

Shayne

Dont you have to sign off for that prior to surgery?  Seemed like they had me verbally say what was being done to me like 5 x... and sign a few things, and even write in my own writing what they were doing to me and what side.  How can they do this without consent?? 

Cindyl

They don't necessarily know where the nodes are before surgery, so the can think they are clear of them and still end up getting some or many.  My understanding is that 3 of my nodes were in the way of my lx and 4 lit up during the snb.  So boom.  7 nodes gone.  Fortunately they were all clear.  But I do have LE as a result of my denodization.

Shayne

I have a friend who is waiting to get a Breast MRi monday.....she has IDC......and checking nodes.  What does she need to know prior to surgery, if anything, to help prevent lympedemia?  anything?  She's a professional musician, so I worry about her arm.

Cindyl

Excellent question.  I'd ask it over on the LE board.  Those ladies are awesome.

Mooleen

When I went to surgery it was supposed o be a simple UMX, but it turned into a Modified radical because he said my lymph nodes were swollen. I probably did sign a paper, but who really knows what they are signing. I completely trusted this BS as he has done several other surgeries on me. Where I live where there are no surgeons who only do breast surgeries. My surgeon has many certificates on his wall for breast surgeries. I probably would go back to him again. We don't have many choices.



Cindyl - you do have lymphadema? When did it start for you? Wow, that really scares me and you only had 7 nodes removed. Are you managing your symptoms ok?

Cindyl

Good question Mooleen.  I still can't get into bras that I wore before my LX.  (The bands are a good two inches too small and they are a cup size too small)  This has been ever since the surgery.  (I've lost 17 lbs) and pants I wore going into surgery are falling off, but I can't wear a lot of the tops I used to wear.  Anything with a tight sleeve is OK in the morning, but painfully tight by the end of the day.  Of course it doesn't help that we've been broiling here.  Then during rads the swelling and soreness got worse.  My RO's nurse says the swelling could be from rads, or it could be LE, but it doesn't really matter at this point.  The treatment is the same.  A sleeve, learn how to do mld, don't lift more than 5 lbs...  So yeah.  We've been able to keep things from getting worse, and I am still hopeful that it will turn out to be something temporary because of rads, but right now, we just don't know.

Ericamary

I had dcis and a diep flap. I was NEVER told that Lymphedema could happen. I now have it 4 1/2 years later! I read about it before surgery and asked and was told not to be concerned, it wouldn't happened.  Anyone reading this and having node removed please beaware this is a real thing that can happen to you. God bless all the breast cancer patients out there! (i had 8 nodes removed) December is my 5th anniversary.

maize

Shayne,

I am sorry about your brother.

I think that the body "thinks" it is doing a good thing when it copies too many cells, like "more is better". 

grt42btexan,

I agree with what the others have said.  You need a doctor you can trust.   I prefer a doctor who "shoots straight from the hip", but with compassion.  I'd rather the doctor said: "I don't know--but I will send you to someone who can tell you."  I also think you made the choice that was best in that situation. 

There are uncertainties in the beginning.  After the initial diagnosis, my friend said: "Well, at least you know what you have and now you can deal with it", but the truth is, until the surgery is done and the final pathology report is in your hands, it isn't that certain.  I knew that the diagnosis could change once the surgery was underway.  I am no expert, but  my impression is that the doctors don't always know until they actually go in exactly what they will have to do.  It seems that they may have a very good idea of what they will find, but it's not always totally predictable.  I was told that the doctor would remove lymph nodes, but how many depended on what was necessary--that it might be anywhere from one to a complete axillary dissection.  I was also told that I might need a lumpectomy, a quadrantectomy or a mastectomy with complete removal of the lymph nodes, depending on the extent of the DCIS, which was not fully known at that time.   In some cases, at some facilities, it seems they can have the pathologist look at the cells during the surgery, but they don't always do that. Several tests were done and each time there was worry and uncertainty (mine) about the results, including the bloodwork and I had to wait for the results, feeling like each time it was all right, I'd sort of "dodged a bullet".  It seems that with any removal of lymph nodes, one or many, there can be lymphedema. I have read that the lymph nodes can be tangled in the fat pads or something or adhesed???

IMO, we all need a doctor who will take the time to sit with us patiently and kindly and explain things and answer our questions, with the attitude that no question is stupid and that we didn't cause our cancer.  Some docs have a formatted "spiel" that they probably give to each patient with that diagnosis because that is easier and usually works, but then the patient doesn't get to ask questions. I imagine that it is uncomfortable for the doctor to say: "You have a cancer" and that any humane doctor doesn't want to have to say it.  There is no nice way to say: "You have cancer".   I was lucky to have a doctor who said confidently: "This can be treated".  I appreciated her confidence and her honesty.  I feel she was trying not to scare me, but was not going to tell me everything was rosey, ginger-peachy, either, because it might be worse rather than better.  The waiting for results was a form of torture.  If you don't feel confident in the doctor's care, it seems it was wise to get another one, and one you have a rapport with.

In the past, they used to make women sign a form that they agreed to surgery and that they might wake up with their breast or breasts partially remaining or might have to have a radical mastectomy without the option of reconstruction.  Women didn't have any idea until they woke up from anesthesia.  They also used to believe that opening you up could cause the cancer to spread.  Some things have changed for the better.