Overwhelmed..just diagnosed, surgery next week

FeelingtheMagic

Well, hello lovely women.  Not delighted to be here, but glad to find such a support system of compassionate (and well informed) people.

There is such a wealth of information here... but it  has all thrown me into overwhelm!  I am second guessing my decision. Diagnosed recently with DCIS, scheduled for lumpectomy April 4th.  Doctor gave me a choice..but it seemed to make sense to do the less invasive surgery, and see what results from that, then I could choose to do the masectomy, if results suggest considering it.   I haven't found a conversation here (yet!) where other people have chosen lumpectomy, with the option to do a mastectomy after, if results are not 'as hoped.'

Results show largest involved .45 cm. DCIS nuclear grade 2, necrosis grade 3.  I am post-menopausal.

It's been a strange 'event'... until I got here, I actually wasn't feeling very frightened. As it happens, my daughter is doing very well after having a rare and aggressive ovarian cancer.. diagnosed two years ago.  Very large tumour cleanly removed, but the cancer within so rare and aggressive that she went through chemo that was... well.. rough: Two strokes, life threatening moments. She is absolutely doing very well. No cancer. Healing still from physical and emotional struggles, as one might expect.. and is an inspiration to so many of us on so many levels. She got married last July! 

 My diagnosis hit me with relief that it is a cancer that is common and there are  'standards' for treatment and huge success rates, and 2. If I had to be the one to drop a bomb on my daughters, it felt better at least being able to say DCIS.  (yes, the hardest part was telling them.)

Then I got here, learning things that I did NOT know,  and it's like suddenly I'm going "aaaggghhhh!"  Perhaps a reality check on my part? Am I crazy to do the lumpectomy, with the intention of doing a mastectomy if results are 'worse' than we know now?

Your thoughts appreciated, and already want to thank all of you for what is already posted here. (Even if I am overwhelmed! ~smile~)  And also, wishing each of you wellness, lightness and joy-filled moments. By golly, you (we) deserve that!  

Linda1966

Hi Janet. Just posting to let you know your not alone and Im sure someone far more educated in DCIS will be along soon to help you. I personally had no choice as even I could see on my mammogram that the dcis was in 3 separate clusters and there wouldnt have been any breast left regardless.

Great news to hear that your daughter has done so well.

Hope someone can come along soon to help.

Moderators

Welcome to BCO Janet! As Lyndal says, you're definitely not alone!

You're in good company with this question too, as many others have wrestled with the same question. There's a section on the main Breastcancer.org site, Mastectomy vs. Lumpectomy, that goes through the options, and advantages and disadvantages of both. We hope this helps!

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debbie6122

Hi Janet. same here i didnt have a choice i had 3 tumors and many calcifications plus node positive so i didnt have a choice. Just wanted to welcome you and let you know that we are here for you. Sorry about your DD (Dear Daughter) but glad she is doing fine. Can you get a second opinion? That might make you feel more comfortable with your choice, i know that there have been women on these boards who did have a choice and choice a lumpectomy and im sure someone will be along if not tonight tomorrow when the boards are more active. Please keep us posted and ask any questions you may have.Sending warm hugs and prayers

Debbie

CTMOM1234

So sorry to read about your dd and welcome. As you read through other people's threads, you'll see lots of people similar to yourself. Having a less aggressive surgery was my preference too, and I reserved the right to have a mx down the road if the situation required it.  May you find inner peace with your decision.

FeelingtheMagic

Thank you, all.  I do appreciate hearing that 'reserving the right for an MX later" isn't strange.  I am appreciating that I have this choice because I realize many don't. It's nice to connect here.. I realize that unless you have breast cancer, you really only know hearsay. But you all already know that!  ~smile~

Ditto with my daughter. Even as her mom, and given the rarity, I don't have a clue compared to what she knows.  So grateful - she really is doing so well. We both practice energetic and thought and alternative healing, as well as traditional modalities, That has helped her a lot with emotional healing lately (and physical, of course!)

Big hugs to all of you.

iswimibikeirun

I did the lumpectomy first too.  However, an mri the week before the lumpectomy indicated I had much more dcis.  DH wanted me to think about skipping the lumpectomy and going straight to the mastecomy.  I had always "reserved the right" to the MX.  Turns out that I didn't have clean margins, so I had to have the MX.  Of course, that's when the tougher decisions came into play.  Did I want reconstruction?  If so, what type?  Those were the overwhelming decisions, not the decision to have the MX.  That was easy.  Did I want skin sparing?  Could I have it?  Did I want to do a bilateral?  What would my treatment be if I did a bilateral v. just the one?

Ultimately, I think I had already made my decision when I first was given the opportunity to have just the lumpectomy.  I needed the extra time to reassure my self I was making the right decision to have the BMX & immediate DIEP and to sort of go through the "grieving process" (for lack of a better description.  Having the lumpectomy first gave me confidence that I would not be horribly miserable during my recovery.  I'm now 9 days out and spent the morning shopping with my mom at Target, Marshall's Bed Bath & Beyond & Office Max.  Of course, I'm exhausted now, but nothing hurts.

 Hope it makes your decision making easier!

dlb823

Janet, my situation was different than yours, but doing a lumpectomy first, to see if that will be sufficient, seems like a very logical choice, especially for an area that might be less than 1 cm.  One question I have for you is, have you had an MRI, to be sure you have nothing else going on in either breast?  

The other thing I would add is... if you are feeling pressured and unsure of your decision, you may want to reschedule for surgery for a couple of weeks out.  DCIS is not a medical emergency, and while we all want to rid our bodies of bc the moment we learn we have it, it's seldom that urgent -- especially with pure DCIS.  You may need to ask your doctor to slow down scheduling just a bit to make  sure you have all the information you need to make an informed decision you feel is the best choice for you.   (((Hugs)))   Deanna 

Sarahalyn

Hi, I was dx with Invasive Ductal ... on 2/27.  I am having a bilateral mastectomy on monday (4/2) I dont yet know if i will have chemo or radiation or lymph nodes removed.  I also dont know until i wake up if i will be able to have reconstruction right away or if i have to wait.  I am really afraid of the unknown. I also dont know if I will be able to maintain my job or not.  This time is very stressful.  I wasnt given a choice due to the area where the "calcifications" are is very vast.  (and in both breasts)... I also am only 36... No history of this type of cancer in my family either.  I think it would be easier to go through this once instead of twice, so i would opt for the mastectomy if i had to choose.  I hope you are doing well.  I am greatful for this forum..

Anonymous

Janet---have you considered any genetic testing? (due to the fact you now have ovarian and bc  in the family) It could help you a lot  in the decision making process.

anne 

Summer2recover

I wish I could direct you straight to a member on here who has a user name of Beesie.   She is my go to person on DCIS.  If you do a search from the upper right hand corner box type her name and DCIS in the search boxes.  Otherwise someone else may be able to direct you to her posts on the subject.  I found it my best resource in making my treatment decisions.  Best of luck to you! Sorry you found yourself here & but I know this is where I learned the most

Jennifferm

Hi Awb. Can you expand on genetic testing? I had colon cancer in 1999 and when I got the BC diagnosis yesterday the dr recommended this.... Thanks.

Blessings2011

JanetBC -  So sorry you're here, but very glad you found us!

First, excellent news about your daughter! I know as her mom, it must have been hard on you, going through that with her.

I think you are going to find a wealth of info here, but also a wealth of opinions on why certain women chose the specific surgery they did with the diagnosis they got.

I had multifocal (in two different places) DCIS, with a multifocal microinvasion of IDC. I was offered a lumpectomy with radiation, and believe me, I went through ALL the possibilities of what it might mean now and later. I even did a "Pro" and "Con" sheet. I considered every aspect.

When I did make my final choice, I was at peace with it, and never once looked back.

May it be so with you as well.

Beesie

Janet, I had a mastectomy, but not because I wanted to.  I had over 7cm of DCIS (plus a microinvasion of IDC) in a small 34B breast.  There was simply no way to remove all the DCIS and still have a breast left, so a mastectomy it was.  If I'd had a smaller area of DCIS, I absolutely would have chosen to have a lumpectomy.  Even now, 6 years later, I still feel that way. Although my experience with my mastectomy and reconstruction was, for the most part, problem-free, it's still something that impacts me almost every day (for example, phantom itching!).  So the way I look at it, a mastectomy is life-changing in a way that a lumpectomy isn't - and the implications of having a mastectomy are with you for the rest of your life. If I had a diagnosis that could be treated over 2 - 3 months, I'd take that option any day over being affected for the rest of my life. 

On the other hand, there are many women who have the choice between having a lumpectomy and having a mastectomy who choose to have a mastectomy or even a bilateral mastectomy. And they are happy with their decisions.  So there is no right or wrong answer, only what makes sense to you.  But here's what I always say to anyone who is asking about a mastectomy but is unsure whether it's the right thing to do.  After a lumpectomy, you can always go back to have the mastectomy.  But after the mastectomy, there is no going back. 

So don't let yourself by swayed by other people's opinions or what other people did or what you read here.  The only person who counts in your decision is you.  You have to do what feels right to you.  That's the best advice that I can give. 

Here's a link to a recent discussion thread where the lumpectomy vs. mastectomy choice was discussed:  http://community.breastcancer.org/forum/68/topic/780254?page=1  You might find some of the information helpful. 

FeelingtheMagic

You are all awesome, thank you.  I have some further questions for the doctor and I'll do that tomorrow. I feel good about the choice of a lumpectomy based on what we know right now and  that the dcis is tiny. I could postpone for genetic testing, which they may be doing (there's 'talk' that my daugher's form of ovarian cancer doesn't 'fit' with the ovarian/breast genetic link)  Still learning. But have daughters and granddaughters so important to pursue this line of questioning.  Beesie, especially.. thanks. I found some of your posts last night and appreciate how informed you are and how well you articulate it!!!

Sprinkles of joy to all of you.

momtobac

Hi, wanted to welcome you to this board. I am a recent member also and have found a wealth of information by just reading the threads. I too was diagnosed with DCIS and am weighing all my options before surgery. I am also going to seek a second and third opinion just to be sure. But I wanted to address the genetic testing as I am awaiting the results of mine. It's called a BRAC analysis--which tests for a mutation on specific genes which shows that when it mutates seems to increase the risk of getting breast and ovarian cancer (these two types of cancers are cousins, I guess). A positive result (at least according to my BS) increases your risk of getting breast cancer by 40% so many people who test positive elect to do a bilateral mx. (I hope I have all the acronyms right as I am new here). Anyway, a negative test result doesn't mean you won't get breast cancer again (I think the test can't possibly test for all the different mutations the gene can undergo) so I'm not sure what I will do if it's negative. Still, it's just another factor to consider when weighing your decision going forward. If there's anything I've learned it's that science is not always exact and sometimes that in itself can be very frustrating (at least imo).

 Good luck with everything. Keep doing research and that will help guide you in determining what is the best course of action for YOU. Hugs.