DCIS Diagnosis/Stage IV Breast Cancer

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TNH
New Member


Date Joined May 2010
Total Posts : 2
   Posted 5/4/2010 12:20 PM (GMT -7)   
 
I am 42 years young and a 3 1/2 year BC survivor originally diagnosed with DCIS stage 0 cancer contained in the ducts.  I had a bi-latteral masectomy and reconstruction.  I was told no need for radiation or Chemo because I had the masectomy.  I am BRCA 2.  After recently discovering a lump on my neck I have now been diagnosed with stage 4 cancer matastesized to my bones.  The only explanation they have is that there must have been a micro invasion at the time of the original diagnosed that was not detected by Pathology docs.  Since I did not have any chemo or radiation it as if I have had invasive cancer for 3 1/2 year.  I went to one of the top hospitals for cancer.  I had a Sentinal Node Biopsy, surgical biopsy at time of masectomy, core needle biopsy, lump removed under my arm a year later and went to all my follow ups nothing was detected.   Please be aware that if you are diagnosed with DCIS Stage 0.  If I would have been able to have a lumpectomy they would have given me radiation.  If you are diagnosed with DCIS please ask for additional treatment such as radiation to make sure this does not happen to you. 
 
Anyone on any advice for Advanced Breast Cancer treatment please share your stories.  I am looking at MDA and alternative medicine for treatment.
 

gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 5/6/2010 3:14 AM (GMT -7)   
Great advice. Cancer is indeed a mysterious disease. One never knows exactly what is ahead.

At 58 I had a lump and elected to have a mastectomy, years later I think I may have been better off doing a lumpectomy and radiation.

My daughter at 39 had a lump showing cancer with a needle biopsy, had a mastectomy and chemo because of her young age, there was no sign of cancer in her nodes. Eight years later she was dealing with Stagee IV and thankfully has surprised even her doctors because she has lived a fairly normal life. Altho she is not by any means clean her onc keeps giving her chemo which seems to keep her going.

A year ago in February my husband who seemed perfectly healthy hurt himself working around on the farm and turned out to have cancer all through his bones. A lung tumor was detected to be the culprit and he went downhill so quickly that he was gone by November. He fought to live but it just wasn't to be.

Take each day at a time and make the best judgements you can, live and enjoy life, but remember to rest enough to fuel your body.


barkyboys
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Date Joined Jul 2003
Total Posts : 1564
   Posted 5/7/2010 4:25 PM (GMT -7)   
I'm so sorry to hear about your experience. I've heard celebrity brca survivors talk about being "cured," and it really upsets me. There IS no cure for breast cancer. Chances of survival are much better with early detection and aggressive treatment, but I still characterize survival as a "crapshoot." Until there is a cure, we won't know who lives, who doesn't. Until we die of something else, we won't know, for sure, that we are, indeed, survivors! Thanks so much for sharing your story. I hope some of our stage 4 survivors will post their stories and experiences for you. We have several friends here who have survived for many years with mets. I'm assuming you've had scans to determine whether or not there are any other metastatic spots they can detect?

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


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 5/10/2010 6:29 PM (GMT -7)   
Hi TNH, sorry for your troubles.
To echo what wise Bev said, it really is a crap shoot. We've known people who defied the odds both ways....those with DCIS that developed into stage IV and those with giant tumors or lots of positive nodes that went many years or a whole lifetime remaining cancer free. And even if you took 10 of us with a stage IIA/ 2.5cm tumor like I had, no way to know who of us will remain cancer free or who will get a recurrance. The stats can only predict what should likely happen, but as we all know, cancer is cancer and does not play by the rules.
 
I am always in favor of second opinions but in your case, surely you followed the best recommendations and the most prudent medical advice but your cancer did not follow the rules. Try not to blame your self for not doing more or enough, and hopefully there is no regret for the medical decision that were suggested.
 
I once knew of another gal who had DCIS and did a mastectomy plus 8 rounds of chemo...more chemo than even recommended for stage I or stage II (and she was stage 0!). She shopped around for at least 3 doctors till she found one who would 'go big' with 8 doses of chemo, but alas, 4 years later, she also developed stage IV cancer.
 
We also know of a gal (who does not post much here anymore) who had stage II in her 30's and a couple years later got it back in her sternum. She was treated with rads and is now about 20+ years cancer free!
 
Just keep making the best choices you can make with the information you have and don't look back on the what if's or should have beens. And keep us posted!


Jorita
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/11/2010 10:14 AM (GMT -7)   
Hi! I to had breast cancer Her 2 positive 2.5 cm stage2.  I am finished with my treatment removed by breast and take chemo pill, and going to a  Hysteroctomy june 1st.  Took my mom for checkup and found another 5mm lump her 2nd time. She had been clear for 5 years and had radiation and lump removal.  You just never know, but God is there for all of us and I talk to him often and am reminded how blessed I am every day!  smilewinkgrin

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 5/11/2010 4:04 PM (GMT -7)   
You are right, Jorita. You never know. I hope things go well for you and your mom. And every day we have is a blessing, is it not?

Hugs to you and your mom!
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


jjjj
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/15/2010 10:24 PM (GMT -7)   
Thank you very much TNH for sharing the info. Is there anyone else who experiences or heard of this?  I always thought with DCIS and stage 0, after bilateral masectomy and a oophorectomy, chances of recurrence is close to none. Am I wrong? 

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 11/16/2010 4:13 PM (GMT -7)   
You are not wrong. But "close" to none is not the same as "none." Some of us have better odds than others. There is no cure for breast cancer. Period.

Hugs...
BEV

KMiyoko
Regular Member


Date Joined Jul 2005
Total Posts : 73
   Posted 12/24/2010 2:33 AM (GMT -7)   
Does anyone have any info of Brain Cancer that started from Breast Cancer? Looking for info on types of treatments available. Also any advise on how to deal with the Nausea from Chemo? Looking for info for a friend of mine.
Thanks,
Kay

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 12/24/2010 2:48 PM (GMT -7)   
They have great drugs for nausea from chemo. Zofran is one. Brain mets can be difficult to treat because of the blood/brain barrier. Often radiation is used to shrink brain mets and reduce the neurological symptoms and/ or pain... sometimes even whole brain radiation. Occasionally they will use lasers to surgically remove the mets, but conditions must be perfect. I wish your friend well. You are very sweet to want to help her gather information.

Hugs to you and your friend...
BEV

sandogger
New Member


Date Joined Jan 2011
Total Posts : 2
   Posted 1/9/2011 2:43 PM (GMT -7)   
Bev's reply really spoke to me. A lot of people tell you that you are a survivor, when in reality, it is a crapshoot.

I was diagnosed with cancer and they couldn't even stage mine until after chemo and surgery. My cancer was Stage III C.

My doctors have been aggressive and I am glad for that.

Hugs to all you going through this!

drbeth
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 8/5/2013 9:08 PM (GMT -7)   
I am really sorry that you who are struggling with recurrences were so taken by surprise after being reassured that you were cancer free. I have found that oncologists rarely mention the possible down side o illness and procedures.
I know that you regret not doing chemo and radiation.
I had a very aggressive but small ductal carcinoma 18 years ago. I did chemo even though my surgeon kept telling me that the tumor was too small for me to need it. He was one of two experts. I was on medical staff and I read my own pathology reports. I knew that if there was any of this very nasty, aggressive cancer running around in my body and I did not do chemo I would have only a few years to live.
I had a lumpectomy in 1996 and everyone agreed that I should do radiation. But my surgeon...a very respected national expert was appalled that I would do chemo.
I now regret doing it. It plays with the endocrine system. I went through menopause at 40 and again at 47. I have osteoporosis; compression fractures in my spine; an arrhythmia; low blood pressure; adrenal exhaustion and extreme depression. You don't realize how powerful estrogen is for reducing depression and helping us focus and organize our lives.
I know that anyone who foregoes chemo and has a relapse will beat themselves up for not doing it.
I lost so much quality of life that I sometimes wonder why I wanted to live. I had a kayaking accident 7 years ago that tore up the cartilage in my right hip. The pain medications required for bone grinding bone made practicing as a psychologist impossible. I expect that I have shortened my life considerably. I know that the quality is greatly diminished. I am exhausted all the time.
My sister had a small tumor 3 years ago. She had a double mastectomy. She just showed me a lump in her neck. It looks like a very solid lymph node and we will see her oncologist tomorrow. I don't know if she could survive chemo after a massive stroke tne years ago. All of you who have found lumps are living out my fear or recurrence. I facilitated breast cancer support groups then got it myself. Life is so full of uncertainties. Who can know what the next right thing to do is? All we can do is our best with the knowledge we had at the time.
I wish all of you who are experiencing these recurrences luck on your journeys. God Bless.
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