Timing from DCIS diagnosis to surgery

gabriellaM

I was diagnosed with DCIS Jan 24 (abnormal mammogram  mid-December, by the time I had more views done, then with the holidays I didn't have my stereotactic biopsy until Jan 21).  Based on the stereotactic biopsy it is grade 2 with some necrosis (but they did not say comedonecrosis) -- there are two areas in the same breast.  MRI was normal (both sides) and I found out about a week ago that I have a BRCA 2 mutation.  I have a breast surgeon and plastic surgeon both of whom I really like (they seem thorough, take time to explain things, and came recommended by a friend who also had a BMX) however I am a little nervous because the earliest they can schedule my BMX is March 21 (just over 4 weeks from now, and essentially a little more than 3 months from my initial diagnosis).  I know with DCIS there is no rush (medically speaking) to have surgery but I am wondering if this seems like a long time to wait.  Initially they didn't want to schedule anything until my BRCA test came back (I have no fam hx of breast or ovarian cancer so we were not expecting a positive result) and my breast surgeon is away twice in March for conferences so it has been hard to find time in her schedule.  Just wondering if anyone else waited this long.

Thanks.

Solen

You sound like you have a story similar to mine.  In Feb 2001, I had two areas of DCIS is left breast.  Had lumpectomy, rads and had the BRCA2 gene.  My oncologist at the time said my cancer was not aggressive, and my husband and I ended up adopting as a result of that diagnosis.  Best thing that ever happened to me!  DR told me my worry would be cancer in other breast, yet at the time, no one suggested BMX.  (remember this was years ago, and thinking has changed since then). 

Well, that oncologist closed his practice, we moved and this past august, new oncologist found DCIS in other breast,  Same slow growing crap. Whoo hoo.  Did not have my surgery until mid November due to the fact that first plastic surgeon would only do bilateral lat flap surgery and I was not willing to strip a muscle off my back to reconstruct my breasts. So it took awhile to see second surgeon and arrange surgery!  And keep in mind, no doctor told me I NEEDED a BMX, I decided I wanted one.    I am very lucky I finally did it.  I never had any lymph node involvement.  Never had chemo.  I had at about 3 months between the mammo and surgery as well (with second time around!)

But I have to say, AFTER my BMX I do feel an amazing freedom from worry.  All the testing.  And I really lived life and didn't dwell on it.

I guess my point to you with my whole long story is I had DCIS multiple times, surgery wasn't always immediate and I am fine.  I also have the BRCA gene so I understand your fear.  But the wait of an extra few weeks with DCIS should not matter too much.  It often times is the way things work.  We always think, CANCER!  get it out of me as soon as possible!  But sometimes, with the testing, needing to find out exactly what type of cancer they are dealing with, scheduling two surgeons  etc it takes time for surgery to be done.  I think you are in a reasonable window of time for your situation, and I wish you all the best.  I had an easy time of the BMX and am back to life as normal.  Take as much care of yourself leading up to the surgery, eat right, exercise!  and hopefully things will go well for you!

gabriellaM

Thanks so much for your post Solen.  It's reassuring to hear someone else in the same position.  I think I know intellectually that this can wait a few months but of course emotionally I want it done yesterday!  I forgot to ask my breast surgeon this question but I assume having a BRCA2 mutation does not make this DCIS any more aggressive than an equivalent DCIS in someone who doesn't have the mutation (just having the mutation is probably what caused the DCIS to begin with).  There was no question for me that I would have a BMX if I knew I had a mutation (I guess that is pretty much the standard nowadays).  

I have one other question maybe you or someone else on this forum might know:  If you have a BMX for DCIS and then have your ovaries removed because you have a BRCA mutation can you take estrogen?  I am 45 years old and once this is all over I know I will need to discuss having my ovaries removed.  From what I've read if you have your ovaries removed prior to menopause it raises your risk for a number of things, but this risk can be mitigated by taking estrogen or estrogen/progesterone.  However my DCIS is ER+/PR+.  Does this mean I will not be allowed to take hormones even if I've had a BMX?

Thanks again!

Solen

depends on your doctor and you about the estrogen. I had my ovaries out 10 years ago.  Since my cancer was so estrogen dependant, I thought that would lower my risk of recurrence .  My old dr let me have some vaginal suppositories of estrogen after.  New doctor thinks he was nuts.  But the estrogen was nice for quality of life.  I had estrogen suppresors before I had hysterectomy and they were rough on me at first (I was 41) but I did them and after awhile they were no big deal felt I was getting off easy compared to chemo!

These days most docs won't give you estrogen, but depends on you and the cancer.  Remember you have a voice in your care.  If I just went along w doctor's POV I would be missing muscles off my back and would be miserable.  So continue to ask questions of us and your doctors.  Know what is important to you in YOUR life and try to make the best decisions possible.  You trust and like your doctors, that is a great position to be in.  Be comfortable with asking them " why?" So you understand your situation.

FYI I have been estrogen depleted for years and look way younger than my age, do NOt hav height blood pressure or high cholesterol  eat healthy and exercise.  Lack of estrogen has just slowed down sex life w husband..... But of course, life, parenting a special needs child etc could be the culprit there as well!  Thank goodness he is understanding!  Just hike the hills here in encinitas today for 2 hours with a friend, no joint pain either! There are choices you can make in your diet to help w lack of estrogen to keep you feeling well.  Another side effect for me is dry eyes!  But there tears are my friend ( eye drops)

I wish the best for you.

Solen

sorry for typos

Using iPad Mimi and I forget I am not texting!

queerbychoice

I had a suspicious mammogram result in July, but a miscommunication between doctors delayed the biopsy until January. It was DCIS. I got surgery within a month of diagnosis, but the six-month delay before then didn't hurt anything. And I have Grade 3 with comedonecrosis.

faerywings

Hi! I was dx'd in mid-Jan and my surgery is scheduled for March 3.so about 6 weeks from dx to surgery. I am also 45 and my BS suggested that I have the BRCA test done since I am "young." She didn't want to schedule surgery until results were in in case I decide to do a BMX if I am positive, but ATM, it wouldn't change my mind over lumpectomy. I am still waiting on the results for that, they should be in soon. I am also E+/P+ so I will have to see what they suggest after that test comes back. 

Good thoughts to you!

Chartruse

Hi, I was DX 10/18/13 and surgery was on 1/27/14.  My BS said that I would not need chemo, rad or meds, since I had to have L mas and I opted for R p mas.  DCIS was in 2 places in L breast.  I had 2 lumps removed from R breast in 2010, and both breasts had nip discharge.  But, I have to see an Onc next week, to cover all bases, per my BS.  I am E/P+.  Please keep us informed and good luck.

windycityDCIS

I also had situation similar to yours.  Got the diagnosis on Nov 17 2012, and the surgeon emphasized that while it was an emotional emergency but not a medical emergency.  I had the surgery Jan 7. - i really wanted to get it over with as soon as possible after the holidays- but he indicated that i could have pushed it back further.  

I had a relatively "easy" recovery- the worst part post-surgery was definitely the drains and getting them removed was a peak life experience!  I had my reconstruction March 20.  THey were able to put a fair amount of saline in at the time of surgery so that helped in terms of getting the expansion done.  I had nipple reconstruction in September and then got my tattoos a couple weeks ago.  I have to say that my boobs looks pretty darned good all things considered.  They will never feel totally natural just because the pectoral muscles are on top, but I don't have any discomfort.  Good luck and try not to stress too much!

gabriellaM

Thanks so much for all your comments -- it's so reassuring to hear from others in the same situation.  I'm sure I will have other questions along the way!

Solen

WindycityDC, I like the way of putting it as an emotional emergency!  It is nice that your doctor understood that !

beatrice00

August 9 I was told I had DCIS, September 30 I had BMX and on February 27 I am scheduled for exchange surgery.