High Grade DCIS - followed by recurrence??

[hermiracles]

Hope you dont mind me asking this question but it is something that keeps playing on my mind - and although I can't change the past, I'm just wondering how many women have been in this situation? I guess probably a lot - otherwise we wouldn't be here? yes?

Why I'm asking is that in 2003 I was treated for high grade DCIS (with comedo necrosis) - with partial mastectomy and 6 weeks of radiotherapy. 6 of 6 nodes were clear and I was pronounced "98% cured" and a few years later when I was considering becoming pregnant I was informed that there was less than "1% chance of the cancer returning"

Well the cancer did return (HER2 +++) and I quickly progressed to Stage 4 with mets to bone. When I sought a 2nd opinion re treatment I was reassured that the recurrence had nothing to do with the pregnancy. That was good because that was also something playing on my mind.

What did concern me though was reading back over the original pathology reports there was some indication then that there may have been an invasive component. Either way I was not offered chemotherapy at the time (though the Onc. I did get the 2nd opinion from recently said she would have given me chemotherapy at the time.)

As an upsetting side-point, the original surgeon when asked to do a referral letter to another doctor, said that I had been offered chemotherapy but had refused it!!?? Why I don't know - but it makes me wonder now whether he knew I should have been offered chemo, when I wasn't and he was just covering his tracks. Does that make sense? (When I questioned him about his statement in relation to chemotherapy and myself - he refused to see me!!??)

Anyway the point I'm trying to get at is - how can doctors say so confidently "98% cured" etc, etc - without testing for HER2 staus or any further treatment than what I was given? I dont understand this. My current Onc. says "oh we don't test DCIS for HER2 status" but I notice a number of people on this board have had their DCIS tested for their HER2 status - which would certainly affect what sort of treatment one is given.

Also I'm thinking if the DCIS comes back consistently "high grade" - its should be tested for HER2 status. Isn't that possible? Maybe it wasn't in 2003 in Australia??? Maybe my tumour sample is still there and it might be possible to test it now - I don't know.

I hope the questions I'm asking are making some sense. I just feel I wasn't properly investigated or treated in the 1st place... and as I said I realise I can't change the past... it's just disappointing!http://her2support.org/vbulletin/images/icons/icon9.gif

Maybe someone can help clarify the situation for me or identify if something similar has happened to you. I feel a bit stuck on this point and would appreciate any suggestions that might bring some closure for me or help me move on.

Thank You! for listening.
Blessings
Hermiracles

[Lani]

and quite a few others. If you go to the search function on the yellow bar above and put in DCIS and RobinP and/or Jean I think they posted their stories.

[Lani]

hope this helps

[Lani]

http://her2support.org/vbulletin/showthread.php?t=23662&highlight=DCIS+Jean

[Jean]

Hi Hermiracles,
I think your questions are very thought provoking. I can certainly understand why your re-thinking your past dx.

When I was first dx. I was told that I had DCIS stage 0. But after the surgeon went in to do lumpectomy he found it was invasive. My tumor was very small to start with (6MM) after biopsey (3MM). The dr. at that time in 2005, told me that he felt all DCIS is a pre-cancer and therefore he treats as such. Then I was told I was stage 1 - from what I was told lumpectomy is usually followed with radiation. I am guessing but back in 2003 maybe they were not testing for HER2. In my case in 2005 they
did. Note that there has been a great amount of change in HER2 in the last few years...from 2005 to present. When I was dx. they were not
giving herceptin to early stagers..under 1CM and node negative.

Your question is valid that back in 2003 would a patient be given
chemo with node negative without knowing HER 2 status? Yet your onc
states he would have given chemo. Sounds off to me, but I am sure
others on the board will be able to provide additonal information on what the procdure was back in 2003. (standard if care)

I do have a colleague who was dx. in the early 2001 with high DCIS
and she had a mastectomy -no rads or chemo - to this day she does
not know if she is HER2. (she has not had a recurrence). Her DCIS
was large and spread out over the breast, therefore the mastectomy was
done.

It sounds like someone dropped a ball, either the patholgoy or the orginial
onc. It sure is a conflicting situation. Your questons raises another thought in my mind. Why the doctors DO NOT have a patient sign off that they have declined chemo. When I had TCH after fighting for it
the onc had me sign a statement for the treamtent. In this day and age of disclosure I am surprised that dr. are not doing that. Now your old onc. is making a statement to the contrary...it appears that he is concerned that you may file a lawsuit against him.

You will note on the board the members will advise taking someone with you to the dr. meetings - did you have anyone with you?

As far the statement of 98% cured..well I can share with you that most
surgeons will use that term due to the fact they remove the cancer
and if confident that they were able to achieve wide margins they feel
you are cured. My breast surgeon used the same sentence, 98% cured.
Well - he never mentioned the HER 2 status at all. When I questioned him
he said he was not concerned because of the size of my tumor. The point I am making here is that the dr. are still learning each day. My surgeon who is a top dr. in NY has learned much from my case and me.
I believe back (not that long ago - a few years ) 2005 early stagers were treated the same if they had the Her2 status. I never bought into that idea and even today there is much controversary regarding chemo/treatment with early stagers. I just can't get over that.
Herceptin works beat when combined...(re: Dr. Slamon - of which I am a big fan).

Your questions make sense and it sounds as if you are mentally reviewing your case...why not - after all it is about you and your breast cancer.
I believe all women should question all aspects. And more likely today you are more aware and therefore have more confidence to question treatment options.

When you have DCIS you are at a higher risk for the cancer coming back or for devoloping a new breast cancer than a person who has never had breast cancer before. There is a percentage of DCIS cases that comes back as invasive. 25% to 50% (rather high). But yet dr. usually do not
give chemo. The theory is that DCIS itself is not invasive. I also don't
buy that theory. There are so many variables to consider with ones biology - the dr. do not have the answers.

I hope some of this has helped you. Without knowing the size of your tumor and how much was invasive and of that invasive part was there
blood vessels involved (this should be on your pathology report).

If this offers any comfort, Shiela on our board was dx. early stage (see her signature) cancer Stage 1 and she did not have chemo and was
told she was Her2 - node negative and she advanced with in a short period of time and is now Stage 4...I am not sure of her dx. date you could check this also. I do think she was dx. after 2003. So the standard
of care back then was not chemo for DCIS and I am still pondering why
your old dr. feels the need to cover his tracks with a recent letter stating he advised chemo. He must really be concerned. Makes me wonder what else is lurking?

Sending you lots of good wishes! How is your treatment coming along? Also, give those beautiful babies a big hug!
Hugs,
Jean

[AlaskaAngel]

Hermiracles,

The farther out one is from original treatment, the harder it is to deal with knowing that we ourselves just didn't and couldn't know everything at the time we were diagnosed. We trust our providers to know the technical things, and feel betrayed when we find out that even though some providers knew, and maybe our own providers should have known, it still didn't happen. I hope the article from early 2004 provides some explanation in terms of your diagnosis in 2003, even though it doesn't discuss chemotherapy. From what you say, it appears the surgeon believed that a decision had been made that you were to be offered chemotherapy. Treatment recommendations are usually made after a group of your specialists meet, review your particular pathology and history, talk over your particular cancer, and come up with a decision as a "tumor board".

You are entitled to copies of your medical record if you request them, including the notes made by your doctors, if you think it would help you to have them.

Megan Rauscher
Reuters Health
Posting Date: March 22, 2004

Last updated 2004-03-22 16:00:19 -0400 (Reuters Health)

NEW YORK (Reuters Health) - Results of a study suggest that there are wide variations in the clinical management of women with ductal carcinoma in situ (DCIS) in the U.S. Some women, it appears from the study, are overtreated with aggressive surgical therapy including mastectomy and axillary dissection, while others are undertreated, receiving no radiation after lumpectomy.

Dr. Nancy N. Baxter of the <ST1:pMinneapolis </ST1:pand colleagues looked at the incidence and patterns of care for some 25,000 women diagnosed with DCIS from 1992 to 1999. The women were part of National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) cancer registry. The findings are published in the March 17th issue of the Journal of the National Cancer Institute.

According to Dr. Baxter, there was a "dramatic change" in the incidence of DCIS of the breast over the 8 years of observation, with a 73% increase in the number of cases detected. "This is likely due to improved detection of DCIS using mammography," she said.

There were also profound changes in some aspects of care over this relatively short period of time. Overall, the treatment for DCIS has become "less aggressive, likely reflecting better knowledge regarding the effectiveness of breast conserving therapy for DCIS and increasing familiarity with breast conserving therapy," Dr. Baxter told Reuters Health.

Nonetheless, some women still received aggressive care (mastectomy and axillary dissection) in 1999. In many cases, this was "likely clinically necessary, for example with extensive DCIS," Dr. Baxter said. "However, the wide variation in the rate of these procedures between geographical regions and based on patient demographics indicates that clinical necessity was not the only influential factor," she noted.

Overall, the rates of mastectomy and axillary dissection for DCIS declined, from 43% to 28% and from 34% to 15%, respectively. "Surprisingly," however, the rate of axillary dissection was still high (30%) in patients undergoing mastectomy in 1999", Dr. Baxter said. "DCIS is premalignant and therefore will not have spread to the lymph nodes so axillary dissection is not recommended," she said.

Another concern, Dr. Baxter said, is that only about half of the 64% of women who had breast-conserving lumpectomy received radiation afterward (45% in 1992 and 54% in 1999), "despite the publication of a randomized controlled trial demonstrating a benefit of radiation after lumpectomy during the study period."

"Even in patients with DCIS with comedo histology - a marker of more aggressive behavior - 33% did not undergo radiation after lumpectomy," Dr. Baxter reported.

In an editorial in the journal, Dr. Monica Morrow of Northwestern University's Lynn Sage Breast Center in Chicago notes that part of the problem is the difficulty in predicting which women with DCIS will develop invasive cancer.

At present, "The treatment of DCIS is more properly considered the prevention of invasive carcinoma", she writes. "A with any prevention intervention, the individual's values, desires, and perceptions of what constitutes an acceptable level of risk should be the primary determinants of the prevention strategy used."


J Natl Cancer Inst 2004;98:424-425,443-448.

[chrisy]

Hi Her,
My history is similar to yours, although beginning in 2002. I got the same answers you did upon my recurrence. My 2nd opinion onc who is very well respected in the BC community noted that they just don't know all the answers on how this happens - and that it may have already spread somehow. At that time (early 2002) they didn't test DCIS but she said even if they had, at that time they probably wouldn't have offered chemo and herceptin was not in the picture then either.

Over the years, they have learned more - I've followed the posters at San Antonio and they are starting to learn why SOME DCIS can spread - someone recently posted an article here on this point. So although the cure rate for DCIS is 98%, it is higher in certain situations - as with invasive cancer, not all DCIS is created equal.

For me, reading that article helped me and my husband accept that this might have just happened - not because of mistakes we or my doctors made, but because the knowledge at the time was incomplete. Or as Dr. Hope had said "it is just the nature of the beast". Your Stage IV recurrence may have been from the small invasive component before it was detected, not from the original DCIS. You will probably never know.

There are others, although we are a rare breed, who began with DCIS and then recurred. I know of at least 2 others on this board - Kim from Connecticut who posts under mamacze and our dear nicola who passed away last year. I know Nicola struggled with these questions as you do, because we talked about it.

I certainly share your disappointment - for both of us. For me, it has been more helpful to try and release the past and focus on the future, and the new research

[Joan M]

Hi Hermiracles,

I had two tumors -- one DCIS and one infiltrating.

My pathology report showed that only the infiltrating tumor was tested for estrogen/progesterone receptivity and HER2 status.

Joan

[hermiracles]

so much everyone for your input and feedback. It's really helping me to come to terms with what has happened. It was interesting too - reading back over the posts on this topic in the past.
Just processing this information is helping me understand more and be willing to move on - I'm a lot more educated today than I was back then!
Thanks so much!
Blessings
Hermiracles

[Becky]

Although I am not Stage 4, when I was diagnosed with Stage 2 Her2+ ER 50% PR neg bc in 2004 in my right breast, I was also diagnosed with DCIS in my left breast (the DCIS was 50% ER and 35% PR and Her2 neg). The DCIS was also low grade and no comedo necrosis. The pathology report also said it was primarily cribiform. It was only 3mm. Both right and left were removed as lumpectomies. I had clear margins the first time around (sentinel node done only on the right invasive side). The margins on the DCIS were wide (2cm). Knowing NOTHING, I preceded onward to chemotherapy (you can see my treatment in my signature). When it came time for rads, I received it only on my right invasive side. My rad onc and a doctor at the Univ of PA (as well as my medical onc at the time) said I did not need rads on the left DCIS. So I didn't. Later (in early 2006) many, many studies were published that "no DCIS is too small not to get rads". Just recently there was a study published (I think it was in the Netherlands) that said that not all DCIS needs rads. Whose to know? In Oct 2007, I had a lump in the tumor bed of my DCIS side. It was a cyst. I thought my rad onc was going to FAINT when I saw him in December (during a regular follow up). He said, " you didn't receive any additional treatment on that side". Since that day happened to be my birthday, I stayed calm as I had told him during other follow up appts that I was nervous and apprehensive about not having rads with all the data out there (and the data was there way before my rads). Now he wants to see me every 6 months instead of every year. The point is - who knows. The difference with my DCIS versus yours is that although I did not have rads (on a "good player" DCIS), I did have a mean actor on the other side so I got chemo and Herceptin. Regardless, that had to have helped the DCIS side too (and later some Tamoxifen, ooph then Arimidex).

None the less, I have to think about whether or not to keep my breasts (that's another post as I have seen may doctors recently on that question). Certainly all of us here started with DCIS that changed to invasive cancer. However, with mammograms, many who are diagnosed with DCIS would never get cancer and go to their grave from something else. I think (at least) high grade DCIS and its treatment needs to be looked at harder and definitive standard of care needs to be established for every grade of DCIS so it is not "willy nilly". This is not how they treat cancer - there is a standard protocol and there should be one for the each of the different grades of DCIS too.

[Paris]

Hi, I always wonder about this as I had extensive high grade dcis w/comedo necrosis along with .5cm invasive component. It was like since I had the invasive part then the dcis didn't matter. It is really hard to find any info on dcis and recurrance. I've read that dcis doesn't respond well to chemo so if one has alot of dcis could it then come back as an ivasive cancer if chemo didn't kill the cells?

So much to learn!

Jamie

[RobinP]

Hi Herm.

I do pray you take care of yourself and don't dwell too much on the whys and what ifs. Instead, focus on healing, eating well, and taking care of your family and yourself. I know that you said you were stuck on the fact that there may have been medical mistakes, but I pray you can put your energies to healing rather than regret and looking back. I know that's hard to do, I 've been there too and knew things could have gone better if my doctors hadn't misdiagnosed me, but I know after much reflection and the passage of time that moving forward is what is best for mental and physical health.


I went from what should have been stage 0 to stage II breast cancer due to a seventeen month delayed diagnosis of my DCIS. Due to my misdiagnosis and wanting to know why I wasn't diagnosed early, I went through with a medical malpractice lawsuit and the doctors in error made a settlement for a substantial amount. A lawsuit can be draining and to tell you the truth I don't think it was worth it physically and emotionally for me. Everyone is different though, and only you can decide what is best for you for healing, whether that includes a lawsuit or not. Whatever you decide to do, I pray that you can move forward ,keeping yourself calm, peaceful and toward the path of healing. Take care of yourself and those sweet babies, honey.