How long do I have to make a decision with DCIS high grade?

pcollins

I was just diagnosed on November 4th, so am very new at this subject.  I met with an breast oncology surgeon on November 16th.  Initially she was adamant that I have a MX.  However, after reviewing all my medical history (Rheumatoid ARthritis, fibromyalgia, Lung disease, etc) she said that a lumpectomy with a local and wire guided surgery, followed by RAD would be the recommendation (due to lung issues a general would be pretty risky).  She wants to do this on the 28th of Nov.  I have not had time to obtain a second opinion.  I feel pretty strong about a second opinion.  Did most or all of you get a second opinion?  thanks so much for this forum.  I am really thrown by this.  Not much has thrown me over the many years of my life - but this is a difficult one to swallow.

rc778

I was diagnosed with DCIS grade 3 this time last year.  From what was told to me, with pure DCIS, you do have some time to research and get another opinion.  I wouldn't put it off for too long, but you do have time.  I did get a 2nd opinion.  Good luck with everything. 

Wabbit

I'm not an expert on DCIS ... I had an IDC (invasive) tumor and did chemo before surgery ... but I can tell you that it was almost 6 weeks before my actual treatment began.  So I don't see any reason that with DCIS you need to be so rushed.     

I think that if you want a second opinion you should definitely get it  ... especially since you have other health issues involved it seems like a very wise thing to do. 

It's late now and not too many people are on the board.  But hopefully tomorrow some of those who have had DCIS will see your post and reply also. 

This diagnosis hits all of us like a ton of bricks ... it kind of feels like you've fallen into a pit and it takes a while to wrap your mind around all of it.  But it does get better.   Sending you (((hugs))) and best wishes for your treatment. 

ETA ... good ... I see somebody else already did reply.      

  

tarry

i had dcis with microinvasion. Three months between diagnosis and surgery. At a major cancer center. No one thought this was too slow.

Mantra

I too had high grade DCIS.  At the same time as my diagnosis, by coincidence I was having an ovarian issue. I saw three gyno in a two week period and each of them said high grade DCIS with comedo necrosis etc was not something to mess with and said I needed surgery quickly. Infact, each of them said my ovary issue needs to take a back seat to my breast cancer. They said to come back after the BS had done the surgery.

I had both a lumpectomy (without clear margins) and a mastectomy all within 6 weeks (approx. - can't remember the exact dates). Fortunately all cancer found was DCIS so no further treatment was required.

I personally would not take too long too long to decide. You want to get try and catch it while it is still within the milk duct. Not all DCIS will turn invasive but high grade is aggressive and needs to dealt with quickly.

ej01

You have time to get a second opinion.  I was scheduled to leave on a vacation 1 week after i got my diagnosis, I was told no big rush, it could wait a couple of weeks until I returned for me to take the next step.  Then I also had another trip scheduled after I met with BS, so it was 2 months from diagnosis to lumpectomy.  Both BS (I got 2 opinions) and radiologist agreed that it was not urgent and I could wait a few weeks.    While the wait allowed me to get informed so I felt more comfortable that I was making the right choices, it was also hard to wait once I had chosen my path.   I was also grade 3.

dancetrancer

No one knows exactly how long you can wait with a DCIS diagnosis, and of course you should proceed with more caution if you have Grade 3.  However, it seems that most people on the board have been able to wait 6 to 8 weeks without bad consequences.  My surgeon told me I could wait, but that he wouldn't recommend waiting more than that amount of time (and I'm grade 2).  

Take the time to get the 2nd opinion.  It is critical.  My first BS wanted to do a lumpectomy f/b rads within 3 days of diagnosing me.  I got a 2nd opinion and those docs (major university hospital) were MUCH more thorough with additional mammo's, US, and MRI.  It was discovered that I had multicentric disease and due to the small size of my breasts, I had to have a MX.  So a second opinion, IMO, is very important.  

Also, I know you said it is risky to go under anesthesia due to lung issues, but please also ask what the risk is with rads and your lung issue.  Rads only hits a small portion of the lung, but it is still something I would want to discuss with my doc if I were you, to be sure it is not an undue risk.  

oliviafinnegan

I don't think there are any firm guidelines regarding how long it takes for cells to move up in grades, but I wouldn't leave it too long. If you schedule a second opinion consultation right away though, I'd think you have time to schedule surgery in a reasonable amount of time. Maybe your surgeon can put off your surgery a couple weeks?

I was going to get a second opinion from another surgeon but discovered that I had the top guy already. Everything turned out fine in the end but my surgery wasn't scheduled so fast that I would not have had time for a second opinion if I'd wanted.

Are you seeking a second opinion because you don't think you need surgery?  Good luck and let us know how you move forward. 

  

Emaline

Everything started for me on 3/21 from finding what I thought was a lump (wasn't) to a mammogram to a excisional biopsy (of the opposite breast) on 4/1 to an 2nd opinion (yes I highly recommend a 2nd opinion if not a 3rd), to an MRI on the 15th or 14th (it all starts to run together), waiting on the final opinion...to uni-MX scheduled on 5/13 (Friday the 13th no less!).  It was a lot of running and racing, especially once I decided on the uni-MX to find a PS that I liked that worked with my BS and that accepted my insurance.  Lots of racing.  But it can be done.

pcollins

Gosh, I am so very impressed and thankful for all your input.  It is so very helpful at this stage when I am in the learning process about DCIS.  The rating "nuclear high grade" urges me to move quickly, but my nature tells me to ensure that I have the best care possible.  So, I have left the surgery date of the 28th in place, while seeking more information.  I have an appt with a new BS on the 23rd.  Thanksgiving holidays take up time too but I am grateful that my grandson and family are coming home for a few days.  I have not told my daughter yet - waiting to do it in person.  One part of me is worried but another part of me is calm due to my faith.  Again thanks so much for all your care.

pcollins

You know my lung doc never once mentioned any affect from RAD.  Thanks for bringing this to my attention.  I am going to email him immediately with a question on that. 

pcollins

One more question, how many of you have had clear margins after a lumpectomy?  It would seem that there are more women who must have repeat surgery / MX ?

MiniMacsMom

I wouldn't wait too long, but I would make your 2nd opinoin count.  Travel if you have to.  Go to an NCI center if the first wasn't.  Or even hit up one of the big ones,  MD Anderson, Cleveland, St. louis.  There is a list online of some of the best cancer care centers in the country. They have so much oomph behind them, they can get more tests approved with less hassell

I have IDC high grade, 9x6x5cm. I am 99% er Pos.  All this makes a difference as does your menstration stage.  I am pre-men.  ( ) and I had just had my son a year ago, high ER time for me.... My Doctor in TX at MDA said that my cancer had really started progressing about a year ago.  Some people have posted that it takes years, but really there is NO reasoning behind cancer. 

My summary, GET a second opinio but don't wait, it may take soem of the big centers up to 2 weeks to fit you in plus a weeks worth of testing. BUT if you are Post-men and you are ER+ and your ER is lower and you are not HER + you prolly have a little more time.  Me, I didn't have more than a week or so to get it out, but, I am getting my second opinion on chemo and Rads post surgery.  I am at MDA, and they are amazing.  Its huge and a little creepy but EVERYTHING except phys therapy for LE is in one building so its not as bad.  Everyone I have met so far has been amazing.  They don't think twice about tests, my onc back home didn't think he could get approved!  Also the bigger centers may have stage 3 and 4 trials that you might be eligable for that offer less invasive treatments. 

 Good luck!

oliviafinnegan

pcollins: Regarding margins, in my post op appointment my bs said that the margins were fine so there would be no need for further surgery. I think the women here who have had second surgeries had pathology reports that indicated insufficient margins or that it was more widespread or aggressive than they originally thought. In my pre-op consultation my bs told me that he tries to take as little as possible because he doesn't want to deform. I told him that I was fine with him taking what he needed to to ensure that margins were clear and big enough. I have bigger breasts so even though my area of concern was 4 cm, there is only a slight difference with my other breast post lumpectomy.   

Susan726

The first surgeon I talked to said that he hardly ever has to go back in to get good margins. Maybe he's more aggressive. The second one, who I chose, said she has to go back in 20%-30% of the time. I had close margins on 2 sides after the first time, so I had to go back for a re-excision. They also did a post-op mammogram to see if there were any residual calcifications that were missed after the lumpectomy. I had a core needle biopsy on September 7th, a lumpectomy on October 26th, and the re-excision on November 16th. Mine was grade 3 with comedo necrosis.

Murmist

I was diagnosed with DCIS in the right breast on the Oct 25.  My BS said there was no rush, but that I should make a decision within a month.  I am also grade 3 with prior OVCA in 2004, family history and BRAC1 positive.  I did get a second opinion which agreed with the first diagnosis. I am scheduled for surgery, BMX, on Dec2nd. The choice of what do is individual.  For myself, having hit the trifecta, I couldn't see going through all this worry again since my risk was so high. Wishing you the best and thinking good thoughts for everyone!

pupmom

I have ILC but I did get a 2nd opinion and it may have saved my life! Long story short, my original team planned to keep my nipple with a lump. When I consulted with a breast surgeon (professor with 20+ years of experience) she said my tumor was TOO CLOSE to the nipple and it would a great risk to keep the nipple.  I might have still had a cancer in my body if I'd stayed with the original plan. Get that 2nd opinion!

Best wishes!! 

cycle-path

Oh, yes, lung issues and radiation. You will probably find some radiation oncologists who will pooh-pooh your concerns. 

http://www.mayoclinic.com/health/interstitial-lung-disease/DS00592/DSECTION=causes 

http://www.uptodate.com/contents/radiation-induced-lung-injury 

http://community.breastcancer.org/forum/109/topic/739321?page=560#post_2709921 

http://community.breastcancer.org/forum/67/topic/777751?page=1#post_2705527 

http://www.everydayhealth.com/breast-cancer/specialists/breast-cancer-radiation-wrecked-my-lungs.aspx 

http://onlinelibrary.wiley.com/doi/10.1002/1097-0142(19940315)73:6%3C1615::AID-CNCR2820730612%3E3.0.CO;2-6/abstract

The possibility of lung and heart damage were among the reasons I refused traditional whole breast irradiation (WBI). I had intraoperative radiation (IORT) instead, which subjects surrounding organs to negligible radiation.

IORT isn't available everywhere and even where it is available, it can be given only to patients who fit certain demographic standards of age, tumor size, etc. But it's so much easier and has no side effects other than some fatigue (and even that is less than with WBI).

I urge you to look into it.

http://www.breastcanceriort.org/ 

pcollins

Well, you all certainly have shared alot of knowledge / web links / experiences, etc. and for that I am extremely thankful.  I am in contact with a surgeon who is very experienced with DCIS.  Am awaiting his reply as to whether or not he will take me as a patient.  In the meantime, I have scheduled a second consult for Wednesday morning.  Don't know what I am going to do about the surgery scheduled on the 28th - may just cancel it and hope and pray that the comedonecrosis doesn't take off between today and whenever I can get the darned surgery done.  Again, thanks so much to all of you.  I don't know what I would be doing with all your input and support. 

P Collins

Eloise

I'm thinking that when you say "second opinion", you're talking about getting a second opinion from a different surgeon?  You might also consider getting a second opinion on the pathology. Several posters here have used Dr. Michael Lagios -- I didn't, but if you do a search for his name their stories should come up.  DCIS pathology can be ambiguous and having someone who has a lot of experience with DCIS specifically can make a difference in how the cancer is graded, and thus how it's treated.

As far as how long you have to make a decision -- you don't really know how long you've had DCIS, do you?  Say you had a clean mammogram a year ago, you still don't know whether the cells crossed the line into DCIS territory 11 months ago or the week before your biopsy.  So, I don't think you should get hung up on a particular time frame, but rather, take the time to be certain you're getting the treatment that works for you, without getting paralyzed by too many options. Getting second opinions and finding a doctor that you trust are certainly worth taking an extra week or two or three.  

pcollins

thanks Eloise, that was certainly a logical approach.  The current BS had her own pathologist (she operates out of a very large teaching hospital) run the slide and confirmed the same results.  The MRI results were also the same.  The reason for the timelime, is that I was told because it is an aggressive type (comedonecrosis) I should not delay.  Your point is very well taken and one that I have been pondering - when did this start in my breast?  thanks again.

cycle-path

pcollins, do remember that "delay" is a relative thing. Should you wait one year before treating your DCIS? Well, I have no medical training whatsoever (other than in applying bandaids) and I think I can still say no, you should not wait one year. Is ok to wait 2 weeks? Well, obviously it is because your surgery be two weeks after your diagnosis.

So then the question becomes "What amount of time greater than 2 weeks but less than one year is ok?"

And no one knows the answer to that, but it's probably reasonable to assume that another 2 or 3 weeks won't make any difference.  At this time of year the holidays do complicate matters -- there are a number of days in November, December, and January when no doctors are doing surgeries -- but a short delay is unlikely to change the outcome for you.

BTW, as I understand it, it's not a case of whether the comedonecrosis will "take off." It's a case of whether there's some hidden invasive cancer within the comedonecrosis.

I guess I'm not sure I agree fully with Eloise's suggestion that you get a second pathology. Someone should correct me if I'm wrong, but it seems to me there are 3 likely possibilities with a second pathology.

1) The second path report is the same.

2) The second path report says the grade is lower than 3. That's good, but it doesn't really change your treatment choices, does it?

3) The second path report finds IDC. And now you've delayed surgery in order to find out what you would have found out from the surgical pathology.

In other words, in your case I don't see any advantage to second pathology opinion, only possible disadvantages. 

eileenr56

HI,

I had two lumpectomies.  My margins were clear the first time, but one margin was not big enough. I had some intermediate and high grade dcis, no invasion.  the second lumpectomy was also clear. 

I don't know how many women get lumpectomies vs mastectomies.   This site seems to have lots of mastectomies.  It's a personal decision.  I would be interested in the stats on how many women really only get lumpectomies and radiation.  I have read that with a lumpectomy and radiation you have the same chances as a women with a mastectomy.  Of course each person is different, each diagnosis is different (margins, grade, how much dcis you have, etc).

My doctor never even mentioned mastectomy.  I personally didn't even think of that at the time.  I had a cousin that has a lumpectomy 23 years ago and is just fine, so I was really using her as my model.  She would call me and check on me.  If i would have read about all these women getting mastectomies at the time, who knows what i would have done. 

I have learned you should really take your time and make a decision that is best for you.  Your doctors will help you through the process.

Good luck.

oliviafinnegan

Eileen, someone said it upthread or on another one on this forum, we have to remember that we on this forum are only a small portion of women who are diagnosed with bc every year. Based on discussions here it may seem that a high proportion of women diagnosed with high grade DCIS have mastectomies, but I would guess it's likely the opposite in the whole population. So much comes down to your tolerance for playing the odds, size of your DCIS area for tumor, personal history, etc.

My diagnosis is DCIS Stage 1-2 and they found no malignancy. So, it was determined that I didn't need rads at this time. I have said no to mastectomy and Tomox as I feel that's over treatment. I'm going with regular screenings and examinations. The general percent of recurrence in my case is around 20% over the course of the rest of my life. As Bessie explained in one of these threads, as you age that percentage decreases. So I have a at least an 80% of no recurrence.  If I do and it's more serious that the event I just had, radiation will be an option for me at that time because I haven't used it this time. Treatment decision is personal and individual to each pathology, only you and your doctor can arrive at a conclusion that suits you best. It may well be that another woman with my same pathology would opt for a mastectomy based on her level of comfort, size of breasts and DCIS area.

3monstmama

I actually just missed my cancerversary.  I was diagnoised in mid November but didn't have surgery until early February.  No one--not the onco, not the zap doctor, not any of the surgeons I got opinions from---thought there was ANY risk in waiting that many months to come to a decision.  Indeed, I was told it was important to have a normal christmas if that was something important to me.

 so get all the opinions you need.