Need your wisdom on DCIS

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LdyJane
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Date Joined Jun 2008
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   Posted 5/16/2009 5:34 PM (GMT -7)   
I used to post on the GERD forum (Kitt is an AMAZING! woman!), bu this is my first here.

I need your wisdom and advice. I have an extensive family history of breast cancer and have had biopsies and close calls, etc. Now I've had another mammogram with a call back and they found a cluster of microcalcifications; another trip to my specialist where she did a stereotactic biopsy. The result are back with DCIS, Grade 0, 6mm; recommendation: lumpectomy followed by 5 day mammosite radiation.

I'm a realist, I'm not afraid of a diagnosis; you can't be, not in my family, but what I can't wrap my head around is the need for any treatment for this. I've read that this is not a cancer, but a pre-cancer; another says, it is a cancer, but not invasive, but it may become invasive if left untreated.

A chance of this becoming a slow growing "real" cancer is not, to me, a reason to jump into a surgical intervention right now. Because of a long standing issue, I have been on estratest (ovaries and fallopian tubes removed in 04); I am more inclined to stop the HRT and wait 6 months to see if there is a change in the mammogram, rather than go in for another surgery. I've had genetic testing, I am not BRCA positive.

Does anyone, anyone, have words of wisdom that will help me to determine if this is a reasonable course of action? Am I just in denial, or is this the result of being diagnosed with a "less than" type of situation than my mother, sister, aunts and cousins?

gma
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Date Joined Jul 2003
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   Posted 5/16/2009 6:56 PM (GMT -7)   
I can't believe with a history of breast cancer you would even question treatment of DCIS. What is pre cancer? It is cancer in the very earliest forms in my mind and I would jump on the lumpectomy and radiation so fast your head would spin. Lumpectomy is nothing and very doable in day surgery. You can go to work the next day if you choose. I wouldn't because of the anesthesia, but pain is minimal and healing is easy. Radiation would be most likely minimal for this, yes, you said five days. I would also quit HRT immediately. I don't think the hormones help anyone who is a possible candidate for breast cancer. Take care of it now and possibly you will never have to worry about it again. Remember I said possibly. One never knows with breast cancer. Hugs MK


LdyJane
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Date Joined Jun 2008
Total Posts : 903
   Posted 5/16/2009 8:07 PM (GMT -7)   
Research out of Univ of CA is showing a different side to this equation and with more and more MD's speaking up against the notion of quick to surgery I have to ask these questions and hoping that someone here would have something that would quell the argument I have going in my head.

The personal side to my story involves multiple surgeries and so many procedures over the last few years that I've lost count; throw in chronic daily migraine and I am so sick of Dr.'s that the thought of one more surgery is getting the best of me, especially when this isn't tangible and the diagnosis is contradicted by "experts".

barkyboys
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Date Joined Jul 2003
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   Posted 5/17/2009 5:36 AM (GMT -7)   
I totally agree with MK. Why take the chance that this will grow or become invasive? And I can't believe they haven't already told you to stop the hormones! Right now, they only test for 2 possible genetic links to Breast cancer. There are others, like the p53 gene, that are linked to breast cancer, but because they are "cost prohibitive" to test for, they don't. So don't take a clean bill on BRCA 1 and 2 as total proof that you are not genetically predispositioned. I understand that you are tired of doctors and tired of surgeries, but you are right about one thing...you are in denial. Follow your doctor's advice, get this thing out, get your radiation, and then you'll probably never have to worry about it again. One of our former board members had a dx of DCIS, no nodes, had a mastectomy, had chemo, had a baby (talk about a hormone storm!), had a recurrence, and eventually lost her battle with BRCA. So this is not a "less than" dx. This is a "boy, are you lucky that they caught this so early" dx. Please take it seriously!

Good luck!
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


LdyJane
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Date Joined Jun 2008
Total Posts : 903
   Posted 5/17/2009 10:49 AM (GMT -7)   
Thanks for your answers, it does help to put things in perspective.
Janice

Reneeren
Regular Member


Date Joined Jan 2009
Total Posts : 21
   Posted 5/17/2009 2:17 PM (GMT -7)   
Janice, my friend! No wonder we haven't seen you! I want you to take a look at this from the National Cancer Institute:

"Ductal carcinoma in situ (DCIS) is a noninvasive breast cancer. In some women, DCIS lesions will progress to invasive cancer, although at present we cannot accurately identify these high risk patients. DCIS is also called intraductal carcinoma."

Janice, this is cancer, not a pre-cancer, not a kinda-cancer, not a cancer wanna-be, it is something that you need to take care of. I know that the different web-sites call it different things, but I'm believing NCI and I would feel a lot happier if you would too!

Biggest hugs!
Renee

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/17/2009 3:47 PM (GMT -7)   

Dear Janice,

Awww sweetie, how torn you are by this and I understand how you feel after all I watched my sister go through.  They did a Right radical mastectomy when they did her ovarian cancer surgery as they found the very thing you have after much testing and discussion my sister made the decision to have the total mastectomy instead of a lumpectomy.  The ovarian cancer was not related to the breast  cancer. Her ovarain cancer as you know took her life. 

Treatment of DCIS has a high likelihood of success, in most instances removing the tumor and preventing any recurrence, particularly a recurrence that spreads beyond the original site. The challenge is to avoid either overtreating or undertreating the condition.

Treatment options for DCIS include:

  • Lumpectomy only
  • Lumpectomy and radiation therapy
  • Lumpectomy and the drug tamoxifen
  • Simple mastectomy Reference/Mayo Clinic

I wish I had the right words to advice you but I think this is one time where you gather all the information and then way your odds and make an informed decision that works for you.  Bless you and know I will be praying for you.  You are one very special lady and I am saddened to know you are going through this.

Love,

Kitt


 

Kitt, Co-Moderator:
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Depression,  & 
 
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http://www.healingwell.com/donate *~*
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Peace does not dwell in outward things, but within the soul
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opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 5/17/2009 7:26 PM (GMT -7)   
Janice,
I am glad to see you posting again, but not under these circumstances. I wish you all the best and am praying everything works out whatever decision you make. We do miss you on the GERD forum.

Bill

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/18/2009 6:39 AM (GMT -7)   

Janice,

I agree with Bill 100% but I understand.................you come back to the GERD Forum whenever you feel you want to.

Hugs sweetie,

Kitt


 

Kitt, Co-Moderator:
Anxiety/Panic, 
Depression,  & 
 
 GERD/Heartburn
*~*
http://www.healingwell.com/donate *~*
Not a mental health professional of any kind
Peace does not dwell in outward things, but within the soul
Clickable Link: Anxiety-Panic Resources


Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 5/18/2009 6:41 AM (GMT -7)   

Hi Janice,

The only thing I can add is my own experience with DCIS. My mother died from breast and ovarian cancer three years ago and my sister has been battling Stage IV breast cancer for the last four years.  We all tested negative for BRCA 1&2! When I was diagnosed with DCIS 9 years ago (this week!) I felt it was a blessing that mine was caught so early.  My sister and mother were not so fortunate.  My doctor is sure that there is another gene responsible for my family cancer history and I was very aggressive with my surgical treatments (double mastectomy and oopherectomy). Breast cancer is very treatable when caught early.  The "wait and see" approach can cost you your life! 

FK

 


LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 5/18/2009 9:50 AM (GMT -7)   
Thank you all for your posts, my goodness, what wonderful people we have on helaing well! Thank you for your support, information, advice, insight and words to ease a troubled mind. I checked out the NCI website and the information there seems so clear cut, that helped so much.

You have all helped and I so appreciate you taking time to do so; my lumpectomy is scheduled for June 19th and I know all will be well.
:)
Janice

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 5/18/2009 5:43 PM (GMT -7)   
Good for you, Janice! There is just no sense in playing with fire and hoping not to get burned. Good luck with the lumpectomy. And keep in touch...it sounds like you have some very caring (and very smart) members on the GERD board as well.

Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 5/21/2009 5:00 PM (GMT -7)   
Bev, thank you, yes, my GERD friends are so wonderful, I'm a lucky woman!

I've learned more since we posted last; the dcis is multifocal, high nuclear grade and both estro & progest +, so I will be stopping the hrt. The radiation is needed because it is multifocal and while it is not invasive the grade is quite high and the nuclei showed significant amounts of mitosis. The biopsies also show atypical hyperplasia and other abnormalities, so it appears as though I am just an event in the making!

I'm am one of these people who needs massive quantities of data in order to make an informed decision and the information out there is so contradictory; it does not help! I'll be doing the mammosite 5 day radiation, that seems like such an easier way to go.

Frayda, my Dr. agrees with yours; while I tested negative and my cousin did as well, there has to be some sort of genetic turnkey that is responsible for many of us developing this. When I talked to one of my cousins the other night, she told me that she was diagnosed with invasive dcis; according to literature, that too seems contradictory, but there is that point where dcis can turn invasive; hers did and with my being noted as high grade it's likely that mine would have turned eventually too.

Thanks again for your help.
Janice

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/26/2009 9:19 AM (GMT -7)   

Dear Janice,

I am so glad you have armed yourself with information so that you can make an informed decision knowing you have looked at all the options. You are a wise woman and I admire you.

I wll be praying for you and when June 19th arrives I will be right here in your corner holding you in my thoughts and prayers.

I believe the members of this forum know their cancer well and they have given great advice and support.  We are lucky to have HealingWell help us through the many tough decisions we come up against daily.
 
Bless each of the members here in this forum.
 
I wish you peace,
 
Kitt
 

Kitt, Co-Moderator:
Anxiety/Panic, 
Depression,  & 
 
 GERD/Heartburn
*~*
http://www.healingwell.com/donate *~*
Not a mental health professional of any kind
Peace does not dwell in outward things, but within the soul
Clickable Link: Anxiety-Panic Resources


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/26/2009 4:44 PM (GMT -7)   
Janice,
 
I emailed you back today and hope it came through. Thank you for your great email.
 
Hugs
Kitt
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