Tough choices

agrp1

Hello everyone. I've been reading this board extensively in the week since I was diagnosed with DCIS and it's been so helpful. My preliminary diagnosis is based on a stereotactic biopsy of a cluster of microcalcifications. ER+, PR+, I see words like central necrosis, solid, cribriform, and micropapillary types on my path report. The only family history of bc is my maternal grandmother, who was diagnosed in her 80s; most doctors agree this was likely longevity-related. I am 41.

 I'm scheduled for an MRI tomorrow. Met with surgeon last week who did not push in any specific direction, just gave me the options of lump+rads+tamox, UMX, or BMX (that based on my adh 7 years ago which shows that I have "activity" going on). All this depending on what the MRI says, of course. 

 So I've been trying to decide what to do IF the MRI offers no new surprises. After several days of changing my mind every 30 minutes, I have come to have more peace about lumpectomy+rads+tamoxifen. But I do worry about whether this is a selfish decision. I would just like to get on with my life asap (and I hate the thought of major, major surgery when there's another way). I'm 41 years old and have a husband and 2 young children. Does my pathology put me at a higher risk for recurrence than others who choose lumpectomy? Mastectomy seems to be a widespread choice on this board. I want to make a wise decision that is not based on fear, but it seems that for me, lumpectomy is based on fear of mastectomy/reconstruction, and mastectomy is based on the fear of the future. Uggh! 

 I'm also facing either ablation or partial hysterectomy in the near future that will allow me to get off bc pills and not bleed to death. I can honestly say I've never been faced with so many crappy choices in my life.

 Thanks for listening! I welcome opinions

Andrea

BLinthedesert

agrp:  it often feels like there are so many choices and we feel like we have to make them right away.  I am not a "veteran" by any means, but since I am going through similar issues I will share some of my observations.  This is just a personal decision, it depends how "risk adverse" you are and what the cosmetic result of a lumpectomy will be.  I personally did not want a BMX/UMX unless absolutely necessary.  

I had a phenominal surgeon.  My MRI showed a very large "area of concern", even though the actual biopsy was relatively small (1.5 cm mass).  My surgeon recommended a lumpectomy to be sure that the whole area was actually problematic.  What this recommendation meant was that there was a possiblity that UMX (I had decided not to do the BMX route) would be necessary after the first surgery - it also meant that if the lumpectomy was successful that I could avoid a MX.  I was so glad I did, because the lumpectomy was sucessful, the other areas were only ADH, and I recovered from the lumpectomy very quickly.  If the original area had been cancer, then I would be facing a UMX, but I think I would have been happy with my decision to leave that as a last resort.

Like I said though, many people feel differently, and would prefer to simply have a BMX/UMX and "get it over with".  I can completely understand that decision as well.  We are all different and feel differently about surgery and risk.

Good luck, talk to your "team" they are there to help you navigate through this.  Further, nothing moves quickly ... as much as you sometimes would like it to ... and sometimes, you don't have as many options as you might think (for better or worse). 

Shayne

Good advice there!

My lesion is only 12mm....super small - so Im opting for lumpectomy.  My radiologist told me she has women come to her for her mammos that are scared to death every year, and live in fear day to day.  She said if I thought Id be that way, then she'd recommend MX.  

For me, and I did not have to think that hard about it....the choice of having my breasts removed for something so small that is NOT invasive.....and so far has not spread.....seems a bit radical.  But its such a personal decision.  I know I will NOT live in fear.....I will get my health screenings, change my diet and hopefully some things in my life, get radiation and take the drugs - and knowing that my percentage of reoccurance will be down to 1%, I can live with that......its just what YOU can live with.  My percentage is the same if I chose MX.  But I cannot or do not want to live without my breasts.  Thats me.  If that were my only choice, I guess Id have to find a way to live with it, but I know I would not be a v happy person.  

You have to live with your decision - make sure its YOUR decision.  Youll know for sure when you get all the information.  And when they get the final path report - that will also tell them a lot more.  Talk to your team, and if there is one doctor that you really resonate with and trust, ask that doctor what they would recommend if you were their sister/wife/mother.

 I promise.....when you have all the information....youll make a decision and feel strong and good about it.  Wishing you lots of peace.  

LAstar

I'm new at this too, but my level of anxiety was much lower choosing the lump route.  My MRI showed more extensive areas of concern and the re-excision couldn't get it all.  The decision to have a MX was made for me, and I can say that I tried everything. The lump and re-excision were easy, so I don't regret trying.  It doesn't make me feel less panicked about having a MX, but I know it has to be done.  

I hope your MRI will be helpful.  It will be good to check out the other breast since you have had ADH there.  Hopefully, the decisions will become clear to you when you see the MRI images.  I struggled with my decision between a re-excision and a MX after I saw the MRI image, but I felt an intense sense of relief when I finally chose the re-excision.  It's a quick surgery with a quick recovery, so it's not a huge investment but if it is enough, wonderful!  

Lynn27

It will always be a personal decision which way to go.  The oncology pros can make their recommendations, but it's your body and your life.  I agree with BLinthedesert, it's all about your risk tolerance. 

If you're a candidate for lumpectomy, the survival rate for both treatments, lumpectomy plus treatment and mastectomy, are the same.  That makes that part of the decision moot and you can put it aside as a consideration:  no matter which treatment you choose your likelihood of not dying from your breast cancer is the same. 

Studies vary, but the likelihood of recurring DCIS after a lumpectomy plus radiation is 15-20%, which goes to 10-15% with five years of tamoxifen.  The likelihood of recurring cancer after a mastectomy is 2-5%.  I've had a surgeon quote <1% post-mastectomy recurrence.  Note I didn't say DCIS:  you can't get DCIS after a mastectomy, you have no ducts left.  All of this is for the same breast.  The other factor, that I haven't been able to get any stats on is the likelihood of DCIS, or some other cancer, occurring in the unaffected breast.

So, you're right it comes down to what are you afraid of, which another way of saying your risk tolerance.  Are you comfortable living with a 10-20% chance of recurrence or are you more comfortable living with a 2-5% chance of recurrence?  If you are ok with the lumpectomy odds, do you want to take tamoxifen for five years (sorry, I don't know if it has any side effects)?If you are not ok with the lumpectomy odds, then you want a mastectomy.

Because it's part of what I do in my work life, I found making a decision tree very helpful.  If you are unfamiliar with decision trees, send me a PM and I'll walk you through it.  It keeps you from being overwhelmed with facing 127 choices all at once.  Instead, you just keep choosing between two options and you'll be led to your answer by your own preferences and biases. 

For my part, I'm having a BMX, right side prophylactic.  I'm having a DIEP (TRAM if I'm unlucky) reconstruction because I don't want to walk around with plastic bags in my chest that I will eventually have to replace probably 2-3 times.  The reconstruction is immediate because I don't want to wake up without breasts.  My risk tolerance is low:  I don't want to have to fight this again.

BLinthedesert

Risk tolerance is such a personal thing -- and I can TOTALLY understand.  There is a lot of peace that can come from not having to go through the biopsy wait cycle that a lumpectomy + rads will bring (meaning they are going to "dig around in us" for the next 20+ years).  My Aunt had a radical mastectomy in the 70s and even though I KNOW they don't do that much anymore, it has stuck in my mind forever - so I am surgery adverse! 

Actually, for most people with grade 1 or 2, risk of recurrence with lumpectomy + rads (and clean margins) is more in the 7% (10 year) range versus 1% for MX.  The 10-20% is lumpectomy alone (with grade 1/2 and clean margins).  The risk does increase with BRCA1/2, family history, and possibly ER status (though this has not been proven yet). 

agrp1

Thanks, ladies, so much. It helps so much to hear from women who have been through it, or are on this path right now. Lastar, I'm really sorry the lumpectomies didn't work for you, but I think I'm like you--if I try it and then *have* to get the MX, I will be okay with it at that point. I am nervous about the possibility of tomorrow's MRI turning up more bad news... but am just praying that it accurately portrays the "situation" in there and can help guide our next steps. And thanks for the stats.

I seem to be feeling especially sorry for myself tonight, so I'm going to eat some chocolate and then turn in

Andrea

Shayne

Ill be thinking about you tomorrow Andrea.....youll know the results right away.....

hoping itll be the absolute best outcome!  

BLinthedesert

Good luck tomorrow agrp ... 

indulge. rest.  

gumshoe

Just read your post, and chiming in here to say good luck! I too started with a lumpectomy and re-excision, and will ultimately be having a UMX. It's a very tough decision and everyone will approach choices differently.



I also wanted to add that I had an ablation over a year ago -- best thing I ever did! It was a breeze compared to all of this

Dooley45

Hi Andrea, I know the pain of making a decision - sometimes it's easier if you have no choices! I opted for unilateral mastectomy with reconstruction and am so happy with my decision. I currently have a tissue expander in and it has taken awhile to get used to the fullness but I know once the implants are in in a couple of months I'll be more comfortable.

I have been in the medical field for 40 years but I wound up making my decision on what I felt most comfortable with both on a medical and esthetic level.

Go with your gut - it'll lead you to the right decision.

Good Luck,

Dianne

longislandmom

AGRP -- when i was diagnosed with DCIS, the first and best thing the doctor said to me was," this is breast threatening, not life threatening."  I, too, had the choice of LX+ RADS or MX.  I also had area of LCIS, which raised my chance of cancer in contralateral breast to close to 20%.  I was a very good candidate for a LX- but opted for a BMX because i am "risk averse"  and wanted desperately to never think about breast cancer again once surgery was over.  Ultimately, the decision comes down to your frame of mind and gut emotional reaction to how you think you will be able to move forward best in the future because the DCIS survival rate is statistically the same for LX and MX.  Recurrance rate is higher (albeit still under 10%) with LX than MX.   So it really is a personal decision -- which doesn't make it easier!  i was not really afraid of surgery-- but i was afraid of RAD.  Also had left side BC, which makes RAD a little trickier.  Finally, i was not attached emotionally to my breasts-- just didn't care about them-- so that part of the decision was easier for me.  I will admit that the TEs are pretty awful, though the surgery was very tolerable.    My head was spinning when i was at your stage of decision making-- because there is no universal right answer-- there is only your answer.  good luck!!!!!

LAstar

How did your MRI come out?

sandpiper1

A few short weeks ago I had been dx with extensive DCIS in my right breast.

Bucked the rec that I would have to have a Mx. Scheduled a 2nd opinion, but had an MRI in the interim.

 MRI magnified the extent of the 'disease'. There really is no chance for surveillence or breast conserving surgery of the right. Nodes look good, so far, however, 3 suspicious areas were found in the left breast, that were undetected by mammo.  I am charged with making a decision regarding a prophylactic MX. While this is not the standard of care, it is certainly a choice presented to me. I have an MRI-guided biopsy scheduled, but BS won't blame me if I decide to forego additional testing and decide on a BMX. Choice is mine. It has been a struggle. However, considering my "young" age of 46 HAHA I have to wonder if I am just biding my time with the opposite breast.  

I know it could be a false positive, now leary of having repeated tests, biopsies or eventual lumpectomy...mx in the future. 

Would the biopsy results really change my mind?

My mind is not where it was a few weeks ago, when I thought this would be an easy decision, based on the fact that I had then thought a prophylactic Mx was way too aggressive and unnecessary. HA! Now it's me facing the decision to actually do it. This just became personal. I am no longer a casual observer.......I felt defeated, then realized I am truly a warrior and will do whatever is neceassry to preserve my health.......and my life. 

How quickly one's mind can change!

Shayne

((hugs)) to you sandpiper1.  Id probably go with with having the biopsy, just to have a complete picture of whats going on.  Sometimes mris an give false info.  You just never know.  

At least you will have peace in your decision - and know that youll come thru this.  

sandpiper1

I am inclined to have the biopsy, but have them go ahead and begin the process of scheduling my surgery. The right is a non-issue at this point. The left remains in question and I can change my mind about that, at any point, because I already have a preliminary plan for immediate recon regardless if it is a UMX or BMX. I am sorry for going on about my situation. In response to the OP...it comes down to gathering information and making the best possible choice for the individual. I have never been one to live in fear of the unknown or take unnecessary action without a complete assessment of the situation. I like that the OP mentioned how the BS presents the options without pointing to a specific course of action. A good BS will function in this manner. It is not their job to create 'hysteria' or push their preference but to present all available options.... and complete testing so an informed decision can be made including the risks and benefits of each. At the end of the day we assess our options and make a choice. In this situation there is no "right-way" and that in itself is why many women get confused about what course of action to take. It is, as you have said, a tough decision. One which most of us would be happy if there was a more 'cut-n-dry' approach to a dx of DCIS. The fact that you are receiving further testing will assist you in having a more complete picture and subsequently making a more informed choice for YOU.
As my BS said to me....."there will be many hurdles in life; this is but one of them; be confident in your ability to decide what is best for you and I will support you........... whatever deicison you make"

Peace to you agrp1 and keep us updated

PS...Heres to chocolate therapy!!

agrp1

Re: chocolate therapy--the brownies are in the oven! lol! Sandpiper, all the best to you as you make your ultimate decision. It is so nice to have a group of ladies that you can share with who are really in the same boat--at the same time! I did get my mri results back (thanks for asking!) My left breast was clear, and there were no additional "suspicious" areas in the right, just a slightly enlarged lymph node. He said that node looked normal otherwise, so could be just a result of the biopsy, but he does want to do a SNB to be on the safe side. Because of the relatively good MRI images, and the way that "still small voice" is talking to me, I have about decided on LX+rads+tamoxifen. Every time I try to make myself "want" a MX, I just get really unsettled (and I started having that dream where my teeth are falling out! lol!). Now I know that things could change with final pathology, etc., and in that case I will do what I have to do. I think it took a good 2 weeks after The Call for the fact that I have cancer to really sink in, and once it did, I calmed down. 

I talked with my ob/gyn the other day and she made the point that early stage cancer is not a death sentence--it's treated like a chronic illness. I guess I can live with that

Take care!

Andrea

LAstar

Great news! Enjoy this next break from it all.  

agrp1

lastar, when is your MX scheduled for?

LAstar

June 19. Going to nola for a bmx and hip flap. It's all very surreal, this crazy journey!

LAstar

I had a good laugh about the dream with the teeth falling out! The night I learned that I would have a mx, I dreamed my two front teeth fell out. You don't have to be sigmund freud to see that connection!

sandpiper1

Yeah Andrea! Such great news on the MRI.

I made chocolate chips cookies yesterday

No dreams about teeth falling out......yet.....I detest those dreams.

I did have a dream I got frisky with the cute neighbor a few doors up. 

Maybe I'll take him some cookies!

sandpiper1

I think I missed the part in class where they do the SNB prior to surgery.

I just assumed it was done at the time of my surgery.

Same day procedure (RO injects the radioactive dye and BS uses a little geiger device to scan the nodes and determine which need biopsied). That way we will know if I need further AND prior to my surgery......... not after.

How cool is that? Learn something new everyday

FilterLady

Sandpiper,

My SNB was done at surgery time.  I went the day before to get the radioactive stuff injected.  Then surgery the next morning.

I thought the SNB was a great tool so that there is no taking multiple nodes like in the past.

I'm all for that chocolate therapy!

Lynn,

I'd like to learn more about that decision tree thingey!

Hope y'all have a great day!

agrp1

Hi ladies,

Today I got my LX and SNB scheduled for 5/30--one week. They don't mess around. Met with RO today and loved her. She made me feel like everything's going to be okay, which I think is a great quality in an oncologist

FilterLady

Hi agrp1,

That's great that you only have to wait a week since that's the hardest part.

I'm so glad you love your RO.....it makes everything so much easier when they give you that "warm fuzzy".  Both my MO and RO give me that feeling.

You'll do fine.....I found out that I was a much stronger person than I ever believed I was while traveling this road....you'll do the same.  You'll get back to a "new normal", which is great!

I hope the time goes by quickly for you and that you get plenty of rest.

God bless you!

sandpiper1

Good news. Left has benign fibrocystic changes (there were several types). The relevance of which I have to discuss with my BS. I also have to factor in my age and the fact that my breasts are dense as well. Such a relief, but my decision to have a bmx has become murky. I do know I will only require a right SNB. YEAH! I am leaning heavily toward just the umx, which is the no brainer at this point. I am so glad I did proceed with the biopsy. Not sure how I would have felt if this came back on post-op path.At least I have my information going into any decision I do make

agrp1

Keep us posted, sandpiper.

I got great news today from Wednesday's LX--clear margins, 0/4 nodes, and pure DCIS. I'd be giddy if I weren't strung out on percocet Thanks for all the encouragement!

LAstar

Yay!  Congratulations!

Shayne

yayayay!!!!!!!!

FilterLady

Great news!!!!!!!!!!!!