|
DCIS & Neoadjuvant treatment - moving discussion to a new thread
This information is provided by AussieGirl. Since more and more studies and patient treatments will involve neoadjuvant treatment - it is a good topic for us to explore.
Quote:
|
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
AussieGirl,
It has been very quiet eh? I've been chewing on this. Recently there was all the press about not treating DCIS as a "cancer" and many women are not pursuing surgery for treatment. I find this interesting and contradictory to the neoadjuvant pCR with DCIS and the associated prognosis. I did note from Neosphere, that the neoadjuvant pCR rate was about 40%, and from Tryphaena - adding anthracyclines increases it to the mid to upper 50s. Skipping the anthracyclines,and offering Taxotere, Perjeta Herceptin with Carboplatin increased pCR to 63.6%. StephN brought up the TOPOII connection to anthracyclines. I would be interested in seeing a study that compared an arm of genetic profiling to functional profiling before neoadjuvant treatment. It is time for randomized studies to go the way of the dinosaur. I think functional profiling for CLL was a prudent FDA approval. And it time to start separating who benefits from neoadjuvant from the patients who are better served by surgery first. So from my observation - Perjeta is effective, but adding the platinum salt increased pCR by 24%. The question is: How does DCIS look under the microscope with Carboplatin? Also, when will Perjeta be approved for early breast cancer in Australia? Do you follow NCCN guidelines or is there a set of Australian guidelines? Thanks! |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
hey ' lizbeth,
I'm day 3 of 6th chemo cycle. Have no brain function just now! Not sure who on this forum has best insight into therapies. I've mainly been learning about adjuvant for my own decisions and neo-adjuvant has so much new stuff. In a while I'll check out our Australian EVIQ site which has links to recommended protocols. Australian govt pretty tight with money for new drugs at the moment....new government has the knife out for most essential services unfortunately. Aussie Girl |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Aussie Girl, 6th cycle.... Means your done right? Congratulations!!!!
|
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
hmmmm interesting
I had pcR or complete response and 1cm of residual dcis - my docs told me that is a complete response because there were no active invasive cancer cells left after chemo as tested by pathology. They said because dcis does not behave like idc chemo would not have much of an effect on it. am I luminal a or b being triple positive???? |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Oh poor AussieGirl, round 6 - the brain function is toast! But good observation Coux92,time to celebrate!
Roz123, I've been up most of the night right up Black Friday sales, my brain function is also nil . . . but isn't Luminal A the best one? Let's pick that one! |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
HER2+ and DCIS is a dangerous combo and should be treated aggressively. I started with DCIS. I went to a top female oncologist at City of Hope (now well respected!!!) who said I didn't need Herceptin!!! and mastectomy was the only needed treatment and that she felt was "aggressive" treatment!. 4+ years later, I had invasive cancer and was in serious trouble so yes, DCIS should be considered cancer and should be treated aggressively. Don't risk your life. I kept asking about Herceptin and was constantly shot down, that was in 1999, thank goodness today Herceptin is given always. In my mind not calling DCIS cancer is stupid and dangerous. We may need sub names for the different cancers to help better define treatment but if it can become a fully aggressive cancer as mine did, it is cancer. Let's be serious and careful. I do not want any HER2 people to have to go through what I've gone through when a solution would have been so easy. I am lucky to still be here given that my doctors back then were so unknowledgeable and unwilling to go that extra mile for me. I knew back then that I needed Herceptin to be safe but everyone told me that I didn't and refused to give it to me.
Sarah |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
@Sarah,
I believe patients & doctors have been conditioned to think of DCIS as an indolent form of pre-cancer. This characterization could be the case for many patients. However, this thinking lacks the personalization of analyzing each individual's cancer and is based on assumption instead of reality. Back in 1999 - it would not have been acceptable practice to give a patient with DCIS the drug Herceptin. We can all look back and realize how prudent it would have been for you to receive trastuzumab. The thinking when the drug was being tested was that the higher the expression of Her2 receptors the more effective the drug would be. The focus was on those with Metastatic Breast Cancer - whose disease was so evident and situation was so dire. Your doctor would not have been able to act beyond Standard of Care without a clinical trial. Trials for DCIS and Herceptin in 1999? I suspect that did not exist. Many young doctors can be very arrogant. Keep in mind that the deaths caused by the medical field is staggering: Quote:
We need to be each other's advocates. It is important to identify subtypes of cancer, and DCIS. Currently there is a large group of cancer patients which are being overtreated by chemotherapy (over 50%) and a small group that is being undertreated (small tumors & DCIS). |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Hello Ladies,
I'm sorry to hear about your experience, Sarah. I can understand your passion! I haven't got the resources I would have at my work at the moment so I'm using the net and my memory here. DCIS is present in two situations - pure DCIS and DCIS associated with invasive carcinoma. The latter is treated primarily according to the invasive component. I'm going to focus on "pure DCIS" for this post. Sometimes a diagnosis of pure DCIS is made, but there is hidden or occult invasive carcinoma present. This can be straight misdiagnosis or a sampling problem by pathology. Note that you cannot process every bit of a lumpectomy (unless it's small) or mastectomy for pathology - representative samples are chosen to be examined. There is not enough money and there are not enough pathologists in the world for every bit to be sampled. Our laboratory in Austraia makes no money out of Breast surgical specimens, these complex tests are cross-subsidised by the small skin and gut biopsies we do. If high grade DCIS is found, a sentinel node biopsy is often done in many centers, particularly if the DCIS is over a large area because of the risk of occult invasion and the possibility of a node met. Even if there is diagnosis of pure DCIS is correct, invasive carcinoma can develop in remnant breast tissue or on the other side. This is because all the breast tissue has been subject to carcinogenic forces over the patient's life. The 10 year survival of pure DCIS is 96-98% (98% in recent years) but the risk of recurrence of either further DCIS or invasive DCIS after an initial diagnosis of pure DCIS found on an excision specimen is quite high over time, varying from 1 to 3-4% per year. The higher figure is for high grade DCIS. A woman with DCIS is 3.9 x more likely to get invasive breast cancer than the average woman. One meta-analysis showed women <40 years at the time of diagnosis have an 89% increase in risk of ipsilateral breast tumor recurrence (IBTR) compared to women >40 years at diagnosis. http://jncimono.oxfordjournals.org/content/2010/41/121 SO: pure DCIS needs to be excised if possible, especially if high grade, +/- sentinel node, radiation and/or tamoxifen. The benefit of systemic chemo hasn't been proven (the maximal possible benefit would be 2% at most because the survival is already good). There is no real place for neo-adjuvant therapy in pure DCIS as you can't diagnoses pure DCIS without excision anyway. Below I include some links to suggest that a little anti HER2 therapy, given at the time of therapy may help reduce later recurrence of HER2 positive DCIS but the evidence is still not in. Low grade DCIS is a different disease to high grade but usually has the same treatment, but I might write more about this another time. CLOSE FOLLOW UP OF DCIS IS CLEARLY WARRANTED! DCIS is also divided into grades (low, intermediate and high grade) and into subtypes on the basis of appearance and receptor/ HER2 status. About 50% of high grade DCIS is HER2 positive. HER2 positive DCIS is often seen in association with HER2 negative Invasive duct carcinoma as well as with HER2 positive invasive carcinoma. When HER2 status is reported, it is very important that it is the invasive component that is assessed. Some interesting links: 2009 Seminar for patients about DCIS. Very discursive but covers many of the issues in an intelligent way www.lbbc.org/content/download/1311/9974/file/LBBCdcis09.pdf General info about DCIS on cancer network. You may have to get a member login http://www.cancernetwork.com/cancer-...-breast-cancer MDA Anderson Centre: Dr Kuerer discusses DCIS, including an indication that one dose of IV Herceptin in treatment of DCIS may be beneficial. http://www2.mdanderson.org/depts/onc...0-compass.html DCIS and Lapatinib - ongoing trial http://www.clinicaltrials.gov/ct2/sh...ductal&rank=1] That's all for now Aussie Girl |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Roz
Luminal A and B refer to oncotype DX type analysis and are ER+ subtypes. Luminal B is higher grade than luminal A and may require adjuvant chemo + anti-ER therapy. Don't worry about it. This primarily a research tool and if your are HER2 positive you are in the HER2 encriched group. "Luminal B/ HER2+ category is ER+ HER2+ high grade invasive carcinoma. Use of this particular category (as opposed to just HER2+ cancer) is always accepted as a category. Aussie Girl |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
well Aussie Girl, sounds like you've done your research. Good luck and good health
sarah |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
As you know I had pre-adjunctive therapy, and my tumor's stayed the same which the doctor considered that a good response. However, my final path changed from the first 1. Grade two and moved to Grade 3 that isn't better. Also, angiolymphatic and extracapsular exposure, and I will never know if that progressed while on treatment or not....Could I of??
Lizbeth, can you just break it down in terms I can read. :) |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
@Linn65 - I will look into it with AussieGirl's help, but my sister is coming over for a massage right now. I just typed this up and was copying it over when I saw your post.
@Sarah - what was your age at diagnosis with DCIS? I am curious about the follow up you received and how was the subsequent cancer discovered? Was your cancer hormone receptor positive or negative? @Roz - AussieGirl points out the gap between research medicine and mainstream medicine. Most of us do not have access to the pathology of our cancers in such detail. I did notice the Spanish study examined Her2 subdivided into Her2 enriched and a new designation Luminal-Her2. Quote:
So, as cancer patients, we run into a wall of “Standards of Care” in the medical field – as compared to what we wish for, more subdivision and personalization of treatment. I’m not blaming physicians for this – as the hospital administration, liability lawyers, insurance companies, pharmaceutical companies, and a multitude of reasons have brought us to a medical system that turns like the Titanic. The iceberg of cancer looms ahead, difficult at times to detect, with the largest danger still hidden under the surface of what we can see. The point: even if you were to know more about the pathology of your own cancer – it wouldn’t affect your treatment options with mainstream medicine. We could look for a clinical trial, but most are focused on initial treatment, and recurrence treatments. Slamon is working on ER positive treatments, but I don’t know how far he has drilled down into subtypes. I think most research remains in the theory stage on subtypes and recurrence patterns. Knowledge is power, and you can use what you learn to seek alternative treatments, diet & exercise changes, etc to work for a better health outcome. @AussieGirl, thanks for letting us challenge you during a suboptimal time (chemo) and for taking the time to share the research and your experience with us. I pick on your chosen profession (physician) quite a bit, but I love the fact that you are a Pathologist. I think many of us on the board would love a field trip to visit you, your microscope and some very interesting cells! I am skeptical of some numbers – such as the pure DCIS recurrence rates. I think the industry does a good job of tracking initial diagnosis and deaths – but the recurrence rates do not make sense to me. Another thing I experienced, and perhaps Sarah too – the follow up at an earlier age with symptoms of cancer or pre-cancer was inadequate. I wish I had known the importance at age 37 of follow up. My nurse made me feel like such an idiot for being concerned about nipple inflammation. Six years later I had 2 Pagets lesions that was only detectable by MRI, and thankfully an IDC lesion detectable by Mammogram. Back to the DCIS discussion . . . I was focusing more on the importance of DCIS with a diagnosis of IDC. Standard thinking might be faulty on the DCIS component – the IDC cells are dead, the DCIS still lives (barely). Is surgery & treatment affecting DCIS in a negative way to affect the cells to adopt a more aggressive function? Neoadjuvant treatment is changing the way we already look at cancer. It is exciting to see the information that is coming from more emphasis on pre-surgery treatments. |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
@Linn65,
A quick look - I can't describe your neoadjuvant as progression. I do see the cancer adapting to the changes in the environment caused by neoadjuvant treatment. I do not see the information available about the nodes prior to treatment. Did you have PET done prior to chemo? Lani had talked about this in a prior post about the vaccines - Her2 changing to Triple Negative. In your case the cells became more expressed in ER. Perhaps we should explore a bit more about ER positive cancers in a new thread. I'll start one a little later. Hugs my friend. |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Are you getting the message???? If so LUCKY GIRL!! Sounds nice.
|
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
I had it in 1 node based on physical exam (I had felt it too). They biopsied the node to so they could say it was cancer. Before my first chemo I had a catscan, breast mri, bone scan. Then chemo, then masectomy, followed by radiation......and as you know no scans unless I have symptoms, and I will know if that happens because it sounds like it will be pretty painful if thats the case most of the time.
My K167 went from 80 to 55%, my ER went from 30% to 73% |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Hi 'lizabeth, it was 1999 when herceptin was only given to metatastic patients and only beginning. I was 52. no nodes. ER/PR positive. surgery that was it, can you believe it! and went to a "top" oncologist (woman) at City of Hope, should call her hopeless!!! She explained what all the markers meant and which were dangerous but felt a mastectomy was enough despite my continuous questions about herceptin. Lucky to still be here. recurrence just under 5 year mark. France threw everything at me, saved me from sudden death and no insurance hassles and people come around and give you manicures or pedicures, massages and stuff while you're doing chemo!!! and they don't want you to suffer pain or have anxiety and generally the rooms have lovely views of the sea! and you can have wine with your lunch! I didn't, didn't think it would mix well with chemo.
These days they say you should stay on anti-hormonals for 10 years not 5. I did 6 but that was in the days, 5 was the protocol and I did 6 years of herceptin after the chemo and radiation (had herceptin during the chemo and radiation also). I wonder if it pays to go back onto an anti-hormonal since the protocol has changed to 10? wish all of you luck with your treatments and health I guess my view is do more than less and fight for it Health and happiness sarah |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Darn - I wish I could have had my infusions in France. I would have loved to have a pedicure and some wine from Alsace, a nice Reisling with lunch.
I had tubs of ice, an easy chair and lots of blankets. @Sarah - I hear the anger with the oncologist. I think it is time to let that go. She was following what was known at the time. Herceptin wasn't approved for Metastatic Breast cancer until several years after your diagnosis, Primary Breast cancer in 2007. Herceptin for DCIS , unheard of in 1999. You knew you needed it - but this oncologist, or any other oncologist wasn't in the position to offer it to you. Not even off label. Today with a DCIS diagnosis you might be able to get access. She wasn't a bad doctor with the initial diagnosis & treatment- you were ahead of mainstream medicine. The follow up might have been less than ideal. How did you find the recurrence? |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
I posted a current study on DCIS, radiation and Herceptin under clinical trials. This study ends March 2019. It has an arm with Herceptin infusions in Week 1 and Week 4, combined with whole breast irradiation. The comparative arm only has radiation.
Sarah - this will be one to watch with interest. Could it be that the Herceptin you wanted in 1999 takes 20 years to be approved for DCIS? |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
I also posted AussieGirl's study on Tykerb and DCIS in an earlier post on this thread in the clinical trial section. The Phase I/II study completes next year.
|
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Hello Lizabeth, thank you for your post. I am actually not angry because I am so happy with the life I have now. I jsut wish to warn others to fight and to be careful. My theme song during chemo when I thought I was dying (the recurrence) was the Eagles song "get over it" and that's my attitude, enjoy each day as a gift and the past is just that, past. I was lucky but I could have been dead. Just don't want others to have to deal with that risk. I am not at all angry but thanks for caring. I love California and am so sorry you are all suffering from the effects of radiation on your food, etc - who would have thought the japanese would have been so careless. take iodine or whatever to protect yourselves. It will get over here also I'm sure. But we had the Russians mess already.
health and happiness sarah |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
LMAO. Okay Okay. I did check and see about the clinical trials of Herceptin and DCIS. You never know - you might have been the catalyst that started the ball rolling on this years ago. You probably traumatized that doctor for life.
So many Americans retiring to France - it must be a wonderful place to live. I'm not worried about the Japanese radiation. I had to start taking iodine (Kelp) several years ago for mastalgia. I've got bottles of it. With the stockpile of nuclear weapons maybe we should all have a bottle of Kelp in the pantry, eh? Geez - and I was silly enough to be concerned about breast cancer. |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Lizbeth, do you mean if you have DCIS, you don't get Herceptin if you're HER2+??? I thought Herceptin was automatic now with HER2, am I mistaken???? California is generally ahead of the curve.
|
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
Sarah,
It is my understanding that all US oncologists follow the NCCN Clinical Practice Guidelines. To stray from the guidelines means prescribing "off label" -using a drug for a purpose other than the FDA approval. I double-checked on nccn.org and did not see Herceptin in the guidelines for Her2 3+ with DCIS. California is generally ahead of the curve on clinical trials, but must comply with the same standard guidelines as the remainder of the country. Here is a snippet of the guidelines: Quote:
From page 77 version 3.2013 Breast Cancer DCIS guidelines Currently California has no plans to secede from the Union - so I guess we are following the same guidelines as everyone else. Those folks over in Texas, now that is a different story. There was a petition circulating not too many years ago to put secession from the Union to a state vote. There are studies with Herceptin and DCIS, but if the numbers are not statistically significant it doesn't stand a chance of making it into the guidelines. I do see an NCCN consensus that MRI should be optional for DCIS based on a study that showed 93 were diagnosed with DCIS using mammogram, but 153 were diagnosed with MRI out of 193 with pure DCIS. |
Re: DCIS & Neoadjuvant treatment - moving discussion to a new thread
I read further into the guidelines and found with breast conserving therapy a study of 215 patients showed an 8 year recurrence rate of 0% for low risk DICS, 21.5% for intermediate risk DCIS and 32.1% for high-risk DCIS.
A different study showed a 94% disease free survival rates with low risk DCIS, and 83% for both intermediate and high-risk DCIS over 10 years. Later in the guidelines it states half of the local recurrences will be Invasive Ductal Carcinoma. I did not see data on DCIS treated with mastectomy for recurrence rates in the guidelines. Based on these numbers - if the goal to reduce recurrence perhaps Herceptin could make it into the guidelines. The studies will be worth watching. I saw that IDC was found in 25% of the DCIS biopsies. I think Sarah's decision for mastectomy was prudent, and not extreme - especially with intermediate and high risk DCIS. |
| All times are GMT -7. The time now is 02:19 PM. |
Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2025, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021