A shocker was DCIS then went to the bloodstream stage 4

margiermc · 10-25-2009, 05:34 PM

Hi, I joined this group the other day. This is a chance to tell more of my story.
August 08 - The surgeon told me I had DCIS, quote - He, said, if you are going to have cancer, this is the best one to have. He said, I would
not need chemo. I had a lumpectomy.

Sept 08 - Final report, surgeon said, I had benign lymph nodes, cleared all margin, no invasive cancer, did not spread, said, you are very lucky,
you just need a few rounds of radiation.

Oct 08 - I was receiving radiation. My back ached every day. I told the technicians, they said, maybe you need a new bed. The radiation onc.
said, its not coming from your DCIS.

Oct 13 - my daughter's birthday, my stomach was huge. The pain was terrible in my back, tylenol was not working, I could not sleep.

Oct 14 - my mother's birthday, my pain was severe. I saw blood in my urine. That night we went to the ER, I brought my bible with me - I felt it was not going to be good news.

Oct 14 at 10 pm - the dr. in er found a tiny kidney stone in my urine. Ran a cat scan, the result liver met.

Oct. 18 - liver biopsy, revealed bc, her2.

In shock, I went from DCIS to Stage 4 in the liver - invasive cancer left the bloodstream and did not go to the lymph node - went straight to the liver.

It was my constant nagging and going to the ER that saved my life.

Oct 22 - port was placed in and rec'd chemo for 10 wks, tax, carb. herc.

Feb 11/09 - last round of chemo

June 09 - vaccine in WA

Now, scans, blood work and herceptin every 3 wk, indefinetly.

It was a roller coaster, quite a shocker, all the doctors were surprised, they never heard of DCIS and going to stage 4 in 2 months.

My advise to all woman, be proactive, be vigilent, if you have pain,
go to the dr, if they dont listen, find another, if all else fails, go to the
emergency room. This is my story, glad to finally share it, margie

Cannon · 10-25-2009, 06:43 PM

That is a hell of a story - I'm sorry you had to live it. You are right, we have to stand up for ourselves, that's the only way.

Wishing you all the best.
Rebecca

Laurel · 10-25-2009, 07:04 PM

Margie,

Wow! DCIS to Stage IV! That is a real eye opener and very sobering indeed. Makes us all feel just that much more vulnerable, doesn't it?

I am truly sorry for all you have endured. Your experience must be shared so DCIS does not continue to be regarded in the cavalier manner it is today. At present they do not recommend Herceptin for DCIS Her2 positive BC. Last I heard it was being earnestly pondered but no formal recommendation adopted.

Margie, might I ask if your DCIS was Her2 positive? Thank you for your informative, and brave post. Welcome to our Her2 family.

Cal-Gal · 10-25-2009, 07:05 PM

WOW margiermc---
I am so sorry---what a shocker---your persistence is a real testimony for you and all of us--thank you--

I am sending you loving thoughts and prayers--

Cal-Gal · 10-25-2009, 07:12 PM

Hi margiermc-

I am no Doctor--but I thought DCIS was NOT INVASIVE--and therefore could not cross into the bloodstream????

I was originally dx w/ DCIS --

I ended up with ILC in addition to the DCIS--

DCIS was found on the mammogram and the ILC found in the MRI and the Ultrasound which followed--

Did you have an invasive tumor that they missed?

I am now concerned that DCIS can cross into the bloodstream--of which I was loaded w/DCIS--11cm in addition to my 4 ILC tumors--

You are an inspiration to what I know to be true and that is that we all have to be our own advocate and demand tests---

Thank you for sharing your story--

Good night---

dlaxague · 10-25-2009, 09:10 PM

So sorry to hear what you've been through. The most-likely explanation for your very-unpleasant surprise is that the initial pathology missed the invasive component of your diagnosis (iow, it was not "just" DCIS). They do not inspect every cell in the biopsy specimen, alas. These mistakes are rare (thankfully, though it doesn't help you any), and I don't know if they are just due to chance, or to poor quality care. If you're interested, it might be worth it to have your original pathology reviewed, in light of what you now have experienced.

There are no studies to confirm your opinion that finding stage IV bc at any particular stage or size changes outcome (based on the evidence that the metastatic be either does or does not respond to treatment, regardless of how/when it's found).

There are many on this forum who disagree with that perspective, but there equally many who will say that once you're dealing with stage IV bc, it's better to be slow to respond to changes and progression because that leaves more tools in the toolbox for longer periods of time.

I do not know the answer to this controversy, but I would guess that it's a matter of style and (perceived) qol. If you feel like immediate detection/treatment of progression is of value to you - then it is. If you feel like a more leisurely approach suits your style and prolongs your life - then that's the way for you to manage your cancer. Each person needs to find an onc whose style is suited to (or can adapt to) each individual's preferred style, when managing any disease, but especially stage IV breast cancer.

Debbie Laxague

Rich66 · 10-25-2009, 09:46 PM

The reality is there is an accepted level of "false negative" in nodal biopsy...just as there is in other diagnostics.
I wish people in the field were always honest about the state of things. It just might help people make truly informed decisions. Both of my parents have advanced cancer and were both previously told they had no worries..even telling my mom she had "a cured cancer".
Regarding when stage IV is found, I can't believe it makes no difference in a number of cases. Especially since treatment does demonstrably prolong survival in many cases. If you find it too late, you may be physically compromised to the point of not being a candidate for many treatments. It would seem plausible that the current stats don't factor in unstudied combinations of current treatments or ones being developed that could change someone's chances if they slow things down at an earlier stage now. In other words, statements like that are inherently rear-view. I personally hope that development of treatments that address the alleged cancer stem cell will be a paradigm shift from chemos that may just be aggravating things in the long run. Likewise with Leukocyte infusion therapy with the 100% cure rate in mice. Yes, I know "we're not mice" but..I imagine most of our "successful" treatments were first demostrated "in vivo" in mice..and probably with a lot lower success rate.

Sandra in GA · 10-26-2009, 08:18 AM

Margie,
Your story is a very scary one. Your response saved your life. I am sure. Thank goodness you had the kidney stone and they did that cat scan.

I found my lump 10 and 1/2 months after my last mamo. When they did the breast MRI at Mayo, they found another suspicious mass (turned out to be a 5 cm DCIS) under the 3 cm tumor. Later when I was trying to learn more about HER2 I found some research that stated that although DCIS is not invasive, sometimes a HER2 tumor will form on top of it. I suspect that this is what happened in my case. I have no idea now where I found this info. When I found my lump and was trying to get another mamo set up locally, my drs office told me at first "It is had not been a year so your insurance will not pay for another mamo." They followed this by adding, "Oh, you had a 'thickening,' we can order a diagnostic." Later that day, I made a call to Mayo and I consider that a life saving call. All of my treatments have been done there including the initial sonograms and biopysies. Even though it is a three hour drive from where I live in south GA, I would do it again in a nonosecond.

Of course, my story differs from yours there. I had 21/21 positive lymph nodes and so far no spread to other organs. I have been treated very aggressively and am very happy with that. I have been in a study at Mayo in Jacksonville, FL where I have received Tykerb along with the Herceptin and all the reg chemo including radiation. I will have my last Herceptin Nov. 11th and then take one more week of Tykerb and finish everything Nov. 18th!! My onc is very happy with my progress. He told me recently "You've come a long way!"

For me, being informed and proactive is the only way to deal with this very aggressive form of breast cancer. It waits for no one, as you well know!

Sandra

Lien · 10-26-2009, 08:54 AM

I was thinking along the same lines. My biopsy didn't show any cancer cells. When the lump came out, it showed DCIS with a small invasive component. If that had been missed (i.e. they looked at a couple of different slices) they wouldn't have found it.

Our doctors do their best, hopefully, but they can never guarantee they got it all, or that you are cured. There's always a risk.

Now about treatment for Stage IV: there are some who think that removing the tumor gives one a better chance of survival. We just don't know enough yet.

I hope you get a lot of mileage from your treatments!

Love

Jacqueline

margiermc · 10-26-2009, 09:28 AM

Thank you for all your response, I'm sorry to give a scare to some, but, remember this is about me and my story. my advise to anyone, if you are sick, pain etc., nobody is listening, in my
case - I went to the emergency room, and they do not ignore you - i am scared - and get scared to tell my story - i now am on the vaccine (ned) in Wa. Not all DCIS turn out to be like mine, but, we cannot ignore symptoms that do not seem to go away with an aspirin, tylenol, etc. This is also, with my faith - God healing me - and I feel blessed.

chrisy · 10-26-2009, 08:54 PM

Hi Margiermc,

Your story sounds a lot like mine...although it took 2 years for my "cured" DCIS to be grow up to be extensive liver mets. Mine were discovered quite by accident - I also had minor stomach upset which led to ultrasounds and the scan which ultimately detected the liver mets. By that time, the tummy ache had long gone...but somehow I had gotten the strong signal to get it checked out.

I don't know how, or why the "DCIS" ended up where it did...and quite early on I decided it didn't matter to me since I couldn't change it anyway. Would I have felt better if my initial diagnosis had been Stage III then graduated to IV?

For whatever reason, it does happen - although rarely. I am also cautious in sharing my story with "early stagers" because of course I am their worst nightmare! I always stress that is is extremely rare...and also that it is still a subject of research to try and identify what factors cause DCIS to go bad...so they will be better able to ID who would benefit from more aggressive treatment.

For me, since I couldn't change the past, the only way to move was forward, as you are doing.

Very exciting you are in the vaccine trial at U of W. I came close to entering one of those but instead ended up in a different direction...but figuring out how to rally our OWN immune systems to fight this has got to be the answer..

Good luck, thanks for sharing and I mean that - it took me about 7 months of lurking before I posted anything!

Chris

Ellie F · 10-27-2009, 03:51 AM

Hi Chrisy
Got to agree that mobilising ones immune system has got to be the way forward.The more I read the more convinced I am that BC is not one disease as defined by hormone or her 2 status etc but many different disease processes that are poorly understood at present.
Ellie

TriciaK · 10-27-2009, 11:50 AM

Thank you for sharing your story, Margie! I know we have all heard that we need to be aggressive in our own healthcare, but your story certainly illustrates it well. I hope it makes an impression we won't forget. I have tended to be one who won't go to the ER until I am so sick my husband calls the ambulance. I think after reading your post I will have to change my ways. A few months ago I was sick enough that I did go, and they found a pulmonary embolism, so I should have learned my lesson then. I am so sorry for all you have gone through, and so glad you were inspired to get the help you needed, and glad there was a better outcome than there might have been. And thanks again for reminding us to be vigilant! TriciaK

suzan w · 10-28-2009, 03:59 PM

Thank you for sharing your story...it is so important that we take charge of our lives!!! I have had so many times during my "journey" where I have had to insist of what I wanted for tests etc. because doctors said things like..."your type of cancer is almost never..." blah blah!!! Often we are asked to make decisions with not enough info or time. This site has been invaluable to me for answers!! XO Suzan

margiermc · 10-28-2009, 04:50 PM

Read the article from Shands University - DCIS and Her2 - shows invasive - if they dont check - this is why women are going metastic - like me

margiermc · 10-28-2009, 06:45 PM

chrisy -

My initial final report lab was never tested
for her2 status on my DCIS - they just said,
I was early and let me go on my way. This
testing DCIS for her2 status could make a
big difference in taking care of it before it
goes to another part of body.

my website www.caringbridge.org/visit/margierose