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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: DCIS alternative treatment

Topic: DCIS alternative treatment

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jul 11, 2009 02:00PM

rbm8449 wrote:

Newly diagnosed with DCIS.  Thinking of alternative method of treatment other then mastectomy, lumpectomy.  Any information from your personal experience, negative or positive, will be helpful in making a decision.  Any information would be great.

mbr

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Posts 1 - 22 (22 total)

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Jul 11, 2009 02:50PM peb wrote:

I don't know what alternative approach you could do that would satisfy your wondering as to whether it is gone without a lumpetomy.. I can definitely see alternative approaches to keeping it away after your surgeon said that everything he go out in lumpetomy is benign. I had stage 0 -3mm noninvasive dcis and just got my report on thurs. My surgeon said that I only need to have a mammo every 6 months. I am find with that because I don't want the side effects of radiation or hormones. If it comes back I will deal with that issue . Having stage 0 noninvasive dcis in my mind does not warrant any other treatment and I was glad that my surgeon thought so. I will keep the appointment with the other docs just to hear their thoughts.

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Jul 11, 2009 04:15PM roseg wrote:

Do you feel lucky?

You could do nothing and see if it grows into something invasive. Otherwise I'd be thinking about surgery.

Rose

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Jul 11, 2009 04:29PM edcicu wrote:

I had a dcis stage 0 non-invasiv 3.5 mm. Surgeon removed it and with clear margins of 10 mm. No treatments, only every 6 months mamo.  The surgery was in January, I will have my mamo next week.

edcicu

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Jul 11, 2009 08:14PM Deirdre1 wrote:

mbr:  The lesion has to be removed no matter what alternative med. you might follow up with and I'm all for anything that has been proven to help.. but the key is proven..  There are some real interesting threads over in the alternative complimentary medicine forum.. You will find some really knowledgeable individuals who have done a great deal of research on the alternatives for breast cancer, whether Stage 0 or Stage IV.. good luck and if you should ever come across anything that you don't think has been mentioned either here or over in the other forum, please don't hesitate to let us know!!!  Best

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Jul 11, 2009 09:44PM penguin1 wrote:

Hi-

I am really not literate enough in that field to know about alternatives, but I had DCIS removed with an excisional, clear margins were obtained and now I do take Tamoxifin as a little added extra insurance plus mammos every 6 months.  I also have LCIS which was found with the excisional.  I would think you really need to get it removed before it becomes something more, that was what my breast surgeon had said and I trust her with my life.  Keep reading and informing yourself- you are your best advocate for sure.  Good luck with everything.

Michele

Dx 4/11/2013, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+Surgery 04/15/2009 Lumpectomy (Left)Surgery 05/15/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jul 12, 2009 08:22AM louishenry wrote:

Hi. I also had a lumpectomy.  I was fortunate that it turned out that my DCIS was removed in biopsy. My lumpectomy was clean. I am taking tamox. It was tough in the beginning, but now it is just fine.

I rotate mammos/us and MRI's. I did read about one study that had 50 women in it. Their DCIS was tiny and low grade and they did not have surgery, just on tamoxifen to see if the calcs would go away. It is still pending I'm sure. Personally, I would have the surgery. It's really not horrible. I've had worse dental procedures.

There is still controversy as to whether or not DCIS is cancer or Pre-cancer. But, all docs agree on surgery to remove the cells that potentially could become the real deal.  Good luck.

Dcis May 2007, 4 mm, grade 1-2, no rads recommended. Tamoxifen September 2007 .BRCA 1/2 Negative. Sis with LCIS

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Jul 12, 2009 01:18PM Deirdre1 wrote:

I don't think there is controversy anymore about DCIS being cancer - it's just that it is a "non-invasive" stage of cancer so if it is caught at is earliest stage (DCIS is Stage 0) and treated +then you won't have a recurrence (at least it is very unlikely - unless the pathologist misses an invasive component within the DCIS in which case it can become invasive - but then it is not true DCIS) ..  However, DCIS can morph into an invasive cancer and frankly that is where it gets muddy - the medical community doesn't know what or when that morph will occur.  It is definately cancer!.  So if it is true DCIS then it is non-invasive cancer - what changes it into an invasive cancer is still unclear. 

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Jul 12, 2009 01:58PM baywatcher wrote:

When I was diagnosed, someone suggested that I try diet as a cure. I didn't believe them and I had a mastectomy.  I wish I had tried diet first. (Most other ladies here will disagree with me.) It is only my opinion. It is just that I have now changed my diet and I won't ever know if I could have been cured without surgery.

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Jul 12, 2009 03:41PM Deirdre1 wrote:

Baywatcher:  I wouldn't disagree with you even though I had a bi-lateral mastectomy (with reconstruction)..  I wish, in retrospect, I had had the lesion removed,  with good margins, and then "watchful waiting" - then if anything else had showed up I could have moved forward with the mastectomy.  Problem with that is no one really knows when a DCIS might morph into an invasive cancer - so it's about taking risks.  I wouldn't have selected radiation either..  I believe that there is just too much unknown about cancer especially DCIS.. I'm not at all sure that diet alone will or would change the dx, but then no one really knows that yet..  Best!

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Jul 13, 2009 07:20PM bethaib wrote:

mbr

I have read quite a few articles lately about people who have gone an alternative route when it comes to cancer, but when they find it is not working, and go back to the docs, it has turned into something much more serious. I would caution you here....

DCIS is not life threatening. You have the opportunity to rid your body of these abnormal cells, which could at some point turn invasive, while they are "stuck" in the milk ducts of your breast.  Treatment, threat to/quality of life, etc is very different when you begin to deal with invasive.

I hope you are able to get enough information to make whatever decision you decide to make about your treatment, but when it comes to cancer, I'd lean toward the odds especially when it has been found at such an early stage....

bethaib

Dx 2/24/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+
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Jul 14, 2009 06:09AM Hindsfeet wrote:

mrb...I suggest both, traditional and alternative. In the end it's your decision. I chose a lumpectomy for a high grade dcis and alternative for after treatment. I read that cancer cells can spread by traveling in the ducts. I would be too nervous leaving the dcis in the breast to migrate elsewhere.

This is the time for you to ask a lot of questions, and do your own research. You must be comfortable with the choice you make. People die in both camps. There are people who are survivors who go the traditional route and people survie taking the alternative route. If you chose the alternative, you will find support and help in the alternative threads in this forum.

God bless in your search for what works for you and your healing. Barry

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Jul 14, 2009 08:35AM, edited Jul 14, 2009 08:37AM by rgiuff

Rbm, do you know how extensive it is sizewise?  If it's very small, a lumpectomy without any other treatment might not be so bad.  I have pretty small A cup breasts and was very concerned about the cosmetic result.   I had a very small Stage 1 high up on my breast removed by lumpectomy and now a year later, the scar is hardly noticeable at all and I have no dent there. This was due to finding a very good breast surgeon who, during the lumpectomy, manipulated the surrounding tissue to fill in the hole.  This is called oncoplastic surgery. 

If your DCIS is more extensive, and you don't want to lose your breast, there are some people who swear that diet and certain herbs could turn things around.  It would be a risk though to do this, which I'm sure you know.  But some doctors do feel that some women may live many years of their lives with undiagnosed DCIS which never becomes invasive.  I had IDC and DCIS in my small tumor, so I think at some point the DCIS must have broken out of the duct and started to become invasive.  So if you do decide to go the alternative route, do lots of research, and I'm sure you would have yourself monitored very frequently for progression of the DCIS.

You could read Susan Love's breast book, which explains the whole process in minute detail.

RoseG

Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-Surgery 05/20/2008 Lumpectomy (Left)Radiation Therapy 08/20/2008 ExternalHormonal Therapy 11/19/2008 Tamoxifen
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Jul 14, 2009 01:04PM tara35 wrote:

 Tara35

Hi Ladies

One night was was lying in bed and I found a lump. I told my husband about the lumb on my breast. He told me don't worry about it now, call you GYN doctor in the morning and tell her about it. I was actually haveing my period the same time that was 3/21/09. When I call my GYN she told me to wait about a week after your period is over and feel you breast wwas over the lumb was sill their so I made an apppointment and when in and see her. She told me it was a fideroma, and I need to get a Mammo & a Sonogram done. I did that on April 1, at around 12.00pm. That same day my GYN docter call me back with the results she told me that I need to see a surgeon to get the breast biopsy. Which I did on April 5., the results came back that I have to a more advance Core biposy because the results are suspious. So I get the 2nd biopsy done 4.10.09  then that result came back it still suspisious that I have to get a excisional surgical biposy done.  That procedure was done on May 1, The doctor told my husband that its very suspious that he have to have to go back it and clear the margins to make sure that is everything is ok.  On May 8, we when in to the dcotor office and he told me and my husband that I have breast cancer 1.6cm and I have to get another surgery to remove the lymph node and then he will schdule me for chemo and radiation once the second surgery is done. I was left in shock I didn't know what to say to both the docter and my husband. He basically told my husband the next step I should get done. So my huband told him that we need a little time to think over it, and we will give him a call. So both me and my husband discuss it and we dicided to get a second opinion and Memorial Sloan Kettering Cancer on May 22, 2009 . The docket at MSKC review that Mammogran and send the slides out to be tested. We  has an appointment to see that doctor on 6/17/09 to review that momogram and the slides she told us that I have a 1.6cm invasive and in situ ductual carcinoma breast cancer And I will differnitely have to get a second surgery to remove the lymph nodes . Which was done on 7/9/09. The doctor told us that she tested the first 3 lymph nodes which was tested positve. ant the others were clear. But we will know for suree how how many were involve this Firday. She told me I will need Chemo for sure. She will recommed us to a oncolgist, and he will let us know the procedure. 

Please give me your support

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Jul 19, 2009 06:59PM dsml wrote:

I was diagnosed with DCIS almost 5 years ago.  Doctors wanted to immediately do a mastectomy.  I went to all the doctors getting ready for the surgery.  I had second thoughts and decided to first look into alternative methods.  I canceled my surgery and have not taken the traditional medical view on treatment for DCIS.  If you study DCIS it will change your opinion about surgery.  I have changed my diet and my way of living.  I have read many books and learn more everyday.  My suggestion is to pray about it and study the alternative views before you rush into surgery.

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Jul 22, 2009 06:11AM Erica wrote:

Unfortunately, doctors still have not found a way to determine when DCIS will become invasive and when it won't. So I believe you're taking a great risk if you don't have the area of DCIS removed. You might be okay but you might not.

When my DCIS was discovered it had already begun to invade my breast tissue. Luckily, it was caught early. I didn't hesitate to have a lumpectomy and then radiation. (Radiation techniques are very advanced these days--computers help the radiologist target the field and avoid any damage to lungs or heart.) I also took tamoxifen.

Three years later, DCIS was discovered in my other breast. This was an entirely new cancer. Although it was very extensive, it hadn't yet become invasive. My oncologist thinks the tamoxifen may have prevented that from happening. Of course, I'll never know for sure. But I feel glad I opted for the conventional treatment. I feel it gave me my best shot at preventing recurrence in my originally-diagnosed breast and invasive cancer in my other breast.

rmb, to me, you're one of the fortunate women who is diagnosed at a time when your breast cancer is actually curable. If the ducts containing the cancer cells are successfully removed from your breast (through lumpectomy or mastectomy, possibly followed by radiation to catch any stray cancer cells), you'll never have a recurrence of that cancer. I know there are risks even from a lumpectomy, and some cosmetic concerns, but again, if your cancer spreads, the cosmetic and medical outcome will both be much worse.

After my lumpectomy, my breast looked fine and I was still the same cup size on both sides. After my second diagnosis, I opted for a bilateral mastectomy. That was almost three years ago and I have no regrets.

Barbara 

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Aug 5, 2009 12:53PM JackieTiger wrote:

I would say no way to alternative treatment, you are playing with fire.  DCIS is cancer, carcinoma is cancer, get it out ASAP.  Only one site showed on my mammogram, I opted for bilateral mastectomy, some would have said that was over aggressive, but they found a second site of DCIS in that one breast and three areas of atypical hyperplasia in the other.  I was a walking time bomb, and luckily did the bilateral mastecotomy and eliminated my cancer at stage zero.

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Aug 10, 2009 11:38AM eau117 wrote:

dsml, I would really like to hear more of your story. What do your doctors say when you tell them you turned down treatment? What kind of diet do you follow, and how do you watch for cancer? I'm at the stage you were at five years ago, and have a second appointment with a surgeon next week. What did you read? To whom did you speak?

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Mar 12, 2011 09:42AM snowshoes wrote:

After lots of reading about DCIS and my third lumpectomy, I see why we can be confused about this time in our lives. I think the bottom line I've discovered...we each make our own decision knowing there is no 100% guarantee no matter which method we take. I think that's what we're hoping and searching for but cancer is complex. As humans we are limited to what our intelligence and research make available to us.

For me, I find peace knowing God is in control of my life. I hope each of you take steps to find that same peace that goes beyond all understanding that only God can give to each of us through his word and prayer.

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Apr 16, 2012 06:14AM leenie1962 wrote:

I see a lot of posts here saying that follow up mammographies are recommended every 6 months.  There is research to support that we may be using mammographies too much.  It is radiation which is a cell mutater.  The typical response from any doctor about monitoring breast health is to monitor with mammography.  They say it's the only test we have to do the monitoring of our breast health.  That is unacceptable and women should be at the podium saying we want another test to monitor our breast health....NOT one that shoots radiation into sensitive breast tissue along with compressive forces that can disrupt the margins of a contained cancer site.  We should be doing more ultrasounds (I know thats difficult with dense breast tissue) and MRI's.  I know MRI's are expensive but I believe that if would could make MRI's of the breast a bit more affordable we would have across the board more women going for breast check ups.  It is unfathomable to me to have annual mammographies starting at age 35 or 40. If you live to be 75 or 80 yrs of age you will have radiated and compressed your breast tissue a minimum of 40 times. That's assuming that there are no re-takes and no health concerns along the way. CAN THIS BE HEALTHY? I sincerely doubt it.

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Apr 16, 2012 10:15AM LAstar wrote:

Research shows how effective keeping a lower (<30) BMI, lots of exercise, and a clean diet can reduce risk of recurrence.  I may focus on this rather than Tamoxifen when the bulk of my treatment is done.  I had a lumpectomy and may need another or even MX.  I feel good about having the surgery (think Monty Python's The Holy Grail --"Tis but a scratch!  Tis but a flesh wound!").  I am young and otherwise healthy and can recover quickly from it.  The raidation freaks me out more but the statistics are quite persuasive.  Being on Taomxifen for 5 years and going into early menopause at 42 is less attractive than cleaning up my life.  I wish you the best in finding the right treatment path for yourself.  

Dx 3/5/2012, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR-Surgery 04/06/2012 Lumpectomy (Left)Surgery 05/04/2012 Lumpectomy (Left)Surgery 06/19/2012 Mastectomy (Left); Prophylactic Mastectomy (Right); Reconstruction: GAP flap (Both)Surgery 10/05/2012 Reconstruction: GAP flap (Both)
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Apr 23, 2012 02:49PM jackier wrote:

Hi there. joing in this board! Wow.. so much goo dinformation.  I have been diagnosed DCIS Stage 0 -  0.6mm.. i am still trying to learn how to read pathology reports.  My surgeon wants to do another sugery to clear that and have some clear margins.. since my DCIS is so small, she did not want to put mastectomy as an alternative, yet it was an alternative.  her direction will be to go do surgery and then 6 weeks of radiation treatment and possible hormone therapy. 

my main concern is the radiation. Since I work full time, will I be tired to go to work?  and do I need to tell my other colleagues about it? only my boss knows about it.  I am not sure what side effects with rads do to you, although i have surfed so much the net, and i was able to capture that it could be feeling tired.    I guess, my concern is avoiding taking time off as I am a key person in the office.    Any ideas or suggestions and/or questions? I have the pathology report with me at all times to understand what it means!

Dx 4/12/2012, DCIS, 6cm+, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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May 3, 2013 06:06PM dp4peace wrote:

leenie,

I feel the same about on-going excessive mammograms for monitoring breast health following DCIS. I have written several blog posts on why I am choosing no more mammograms. I want to let everyone know about the Aurora RODEO MRI. Please see my blog post and story here: http://dcis411.com/2012/02/01/my-choice-for-no-radiation-no-more-mammograms/

Donna Pinto

Dx DCIS, 3cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2-