TRIPLE POSITIVE GROUP
Comments
-
Hello everyone,
I don't usually post but usually read. I haven't even had time for that because of radiation. Just finished. Woo hoo, right? Before I started radiation, I had just met with my surgeon and he gave me the best news ever - the pathology report from my mastectomy showed that I had a complete pathological response to my neoadjuvant chemo. Double woo hoo, right?? Yesterday I met with my oncologist and he gave me a copy of the pathology report. Yes, it says that there is "no evidence of residual invasive carcinoma indicating complete response to neo-adjuvant chemotherapy" but guess what else it says? "Ductal carcinoma in situ: present" "Paget's disease of the nipple: present" WTF??? Surgeon did not tell me that part!! Here is exactly what my report says:
DCIS type: cribriform and lobular cancerization, Nuclear grade of DCIS: 3/3, DCIS necrosis: absent, largest focus of DCIS = 2mm, Paget's disease of nipple: present
Hormone Receptrs and Her2 status for DCIS: Estrogen receptor protein: postivit 95%, Progesterone receptor protein: positive 30%, Her2/neu protein: score 3+
Does anyone know what this means? My oncologist literally said to me, "It's fine. The DCIS is pre-cancer. Besides, you had a mastectomy. It's gone!" But why didn't the chemo and herceptin work on the DCIS if it worked so well on my tumour and the lymph nodes?? Why didn't it work on the Paget's disease? And the DCIS was Her2 positive like +++ positive!! Doesn't that mean it was agressive and moving? Did this DCIS grow in the 5 1/2 weeks between my chemo ending and my surgery?
0 -
I haven't burst into tears in front of my doctor, but have had the trembling lips a few times!
What makes me laugh--if I get sniffly, my dog runs up to me and gives me a big sloppy kiss in the ear!
0 -
Ashla she had chemo/herceptin first. I think next BMX with nodes then rads. She was HER2+ but hormone -. Same size tumor as mine. We have the same Onc/BS. When she recurred it was 2 years PFC and it was every where even her brain. She had to do whole brain rads and a few different chemos but now she's on just herceptin and I think some bone strengthening drug (not Zometa but a new one). She's doing great.
Foreverchanged It's not unusual for DCIS to be HER2+. Many times if goes invasive it doesn't stay that way. But the fact that the chemo gave you complete response to the invasive part is the most important. Any strays you might have had were invasive and as you can see the chemo worked. DCIS: the IS means "in situ" which means "in place." That means that it didn't go anywhere. The IDC is the stuff that did.
My biopsy showed only IDC and he took 4 or 5 samples from my giant tumor. Ends up I had 5.5cm of IDC but 1cm of DCIS. It's not unusual for a tumor to have a combo especially big ones like ours. BTW I did chemo first so I don't even know what response I had to it. I'm almost 2.5 years PFC, coming up on 3 years NED at the end of the summer. You got even more treatment that I did.
0 -
Thank you so much for your response, Lago. You have finally calmed the crazy lady in my head that has been there since yesterday!!! I have to go and fill my prescription (which I also received yesterday) for Tamoxifen now...
0 -
foreverchanged - it is not unusual to find residual DCIS even with PCR of the invasive part of your tumor after neoadjuvent chemo. I believe that survival stats are unaffected. Paget's is less common but thought to be present due to the invasive part of your BC - they usually go hand in hand. Most DCIS is Her2+ but because it is not invasive it is noted in path reports some of the time as it is not always looked at because it does not currently affect treatment. Her2+ DCIS is not treated as an invasive mass that is Her2+. It seems as though the treatment you have received up to this point is appropriate for the circumstances so try not to worry.
Here is some info from Beesie's DCIS thread:
- At this time, based on current medical knowledge, there is no relevance to HER2 status for those who have pure DCIS.While HER2+ invasive breast cancer is known to be very aggressive, there is little understanding of what HER2+ status means for those with DCIS. Several small studies have been undertaken to determine how HER2+ DCIS differs from HER2- DCIS; the results of some of the studies have shown that HER2+ DCIS might be more aggressive but the results of other studies have shown the opposite. So there's no clear answer yet. There also are no special/different treatments for those who have HER2+ DCIS, although several clinical trials currently underway. What is known is that a large percentage of DCIS is HER2+ (a much higher percentage than for IDC) which may suggest that as DCIS evolves to become invasive, in some cases HER2 overexpression might decrease, with the cancer changing from being HER2+ (as DCIS) to HER2- (as IDC). HER2+ DCIS is an evolving area, so stay tuned. But for now, don't worry if your DCIS wasn't tested for HER2 status - some doctors/hospitals do this testing, others don't.
Here is some Paget's info from the NCI:
Doctors do not fully understand what causes Paget disease of the breast. The most widely accepted theory is that cancer cells from a tumor inside the breast travel through the milk ducts to the nipple and areola. This would explain why Paget disease of the breast and tumors inside the same breast are almost always found together.
How is Paget disease of the breast treated?
For many years, mastectomy, with or without the removal of lymph nodes under the arm on the same side of chest (known as axillary lymph node dissection), was regarded as the standard surgery for Paget disease of the breast (3, 4). This type of surgery was done because patients with Paget disease of the breast were almost always found to have one or more tumors inside the same breast. Even if only one tumor was present, that tumor could be located several centimeters away from the nipple and areola and would not be removed by surgery on the nipple and areola alone (1, 3, 4).
0 -
Special K: Bless you! And indeed, my IDC was multi focal and in many places so it is likely that it travelled out to the nipple and areola as just another one of the satellites off the primary tumour. But why didn't it respond to the chemo and herceptin the way the other invasive cells did?
Once again, calming the crazy...can't thank you all enough!
0 -
foreverchanged - Since the treatment for DCIS and Paget's is surgical I am guessing that chemo is not as effective on these types of cells, I know that it would be considered overtreatment for pure DCIS. I think less is known about Paget's because it is found in such smaller numbers. That being said, IDC does not always respond to chemo as well as it did for you. There are many who still have residual IDC after neo-chemo, that is why surgery, rads and hormonal therapy, if appropriate, are prescribed in addition. The good news is that you did have a good response, and your doc says that it is all gone and not to worry! I know that is always easier said than done!
0 -
Foreverchanged, congrats on the good news! I wish I would have had neoadjuvant chemo so I could know if I responded...
Yeap, to me the vanity issues are huge. I know I'm not drop-dead gorgeous and never was, but I always strived to look femine. So two weeks ago before getting herceptin, the chemo nurse drew some blood for hormone testing. I found out from my BS that I have the estrogen level of a 21 year old woman. No wonder I've had no menopausal symptoms besides loss of menses.
So now they are considering treating me with Lupron to shut down my ovaries. With the weight I've gained and the semi-bald head, I'm gonna look like Chaz Bono! I get so sad thinking about growing a beard and getting a deep voice...
Oh well, I'll keep wearing pretty earrings...and lipstick...
I used to work as a clinical pathologist, and tumor markers are definitely kind of iffy. None are 100% specific for a certain type of cancer or organ (except maybe PSA or thyroglobulin)...and most importantly there is no standardization between them, so if you are tested at hospital A by one company's test, you might get a completely different result at hospital B if they are using a test from another company. The FDA says they are for monitoring treatment only and should be used as an adjunct to clinical information. My MO says he doesn't use them either.
0 -
SpecialK - Thank you for posting that info about DCIS and Her2+. That simple explanation helped me understand my BC journey more than anything my Drs have told me!
Lago & Ashla - thank you for your comments regarding our fears, emotions, vanities and "what ifs". You put into words a lot of my own mental ramblings.
Since I had to have cancer, I'm glad it was 3+, because all of you ladies on this board are so helpful, informative and encouraging! Blessings to you all!
0 -
Pbrain looking like Chaz Bono is much better than looking like Gollum (my chemo look when not wearing scarf, make up and bling).
Bren & Forever, Aw you 2 are so sweet.
0 -
I love how u gals can make people feel better about their reports.
0 -
Hi ladies, I have returned to work, part-time, so I have not posted in some time, but I read all the posts. Welcome to new gals undergoing treatment. May this site be a source of comfort, inspiration and information that allays your fears.
FeelingtheMagic, I plan to skip my last Herceptin treatment. I am a math kind of gal, so to do 16-17 treatments, well, if the Herceptin hasn't gobbled up all the Her2 protein molecules residing in my body after Treatment #16, heck, what has been the point of all the treatments? I will have received 94% of the benefits, and I think we all understand that there is still a lot of hypothesizing going on with regard to setting timelines. For example, at the San Antonio BC conference in the fall of 2012, it was confirmed that 2 years on Herceptin was too long, and the SEs were too great, compared with the benefits; six months was deemed too short a period; one year was deemed to be the gold standard. . . for now. I want my hair to grow faster, as well as my nails, and I am tired of dry skin and a drippy nose. Vanity, you say (some of you, maybe??), absolutely
.Karenrm, I am so sorry that you have to go through the emotional upset of having your hair, literally, go down the shower drain. You are far braver than I as I buzzed it off after the first treatment as clumps were coming out, freaking me out 100%, and I found it easier to buzz it than have that kind of loss continue for 2-5 weeks. I am now 6 months post-chemo, and I have thick, albeit short hair (in the front much moreso than in the back) on my head. Still wear my wig in public as I do not feel super confident with short hair.
Foreverchanged72612, thank goodness for the knowledge base Special K and lago, especially, possess. Hope you are feeling calmer about the DCIS news.
PBrain, of course it matters how we look, and you have every right to feel sad about losing aspects of your femininity. Someone said it already, this crappy disease not only leaves physical scars in your chest region, it also claims most people's hair, some people's breasts and lymph nodes, causes us to experience bone and muscle pain we did not even know existed, messes up our mouths, stomach and excretory systems; leaves us like dried-out leaves, at times, during the treatment; affects our emotions; causes some of us to go into menopause very quickly, etc. Wow, we are all AMAAAAAAAAAAAAAAAAAAAAAAAAAAAZING women
, are we not?? Just writing all this (sure I missed some things) makes me realize what we are either enduring presently, or what we have overcome. Much love to all of you. So glad this forum exists.
0 -
I had one last summer. It was ordered by my gynecologist/general practitioner. One was a CEA marker test and the other one was the one Fluff mentioned (CA 27/29). I went to him for my yearly pap smear (I was a bit late on that) and had felt the lump at that point. I assume that's why he ordered the test because he felt it as well and wrote the order for the diagnostic mammogram.
I don't think my oncologist routinely runs either test - or I don't recall seeing that one on the pink sheet with the other blood work results.
IIRC, my CEA was 1.64 in July 2012. The gynecologist thought that was a good thing and wrote a little note about it on the order for the breast surgeon. I can't recall what the CA 27/29 numbers were.
0 -
Gratitude forlife u sound wonderful==perky and happy and i love it--Good for u--Keep on going.
0 -
Gratitudefor life--thanks for the kind words. I had my hair cut short but not buzzed. Still long enough to clog the tub. DH used a whole bottle of drano to clear it! If that's a current pic of you, I think you look cute with short hair, but I know how you feel. I had medium or long hair all my life. Still, the short cut is better than the Homer Simpson look...
So, here's an upside to chemo--my age spots are fading and my skin is soft as a baby's (well, maybe a toddler's)!
0 -
Just gotta say WOW and AMEN to all if you......you all ROCK!!!
FINALLY I feel better....thank God!0 -
Miss Lago....seriously you ROCK short hair
0 -
Camillegal, thanks for your kind words. In case you haven't figured it out by now, we all love you, especially your candour and humour. Always enjoy reading what you share with us
.Karenrm, you are in the early stages of the chemo treatment course, and I totally empathize with your comment about preferring short hair to the "Homer Simpson" look. I really did like my longer hair as it was thick and wavy and a nice medium-auburn colour, so the short hair isn't horrible, but I just don't feel like it is the "me" I identify with when I look in the mirror. I finish Herceptin in Aug., 2013, and lots of gals who have already finished Herceptin have written that their rate of hair growth increases once the Herceptin is finished.
Off I go to Slumberland. This working half-time bit is really making me feel tired
---but I do love being back in the classroom with hormonally-crazed teenagers. 0 -
bren - glad I could help!
gratitude - thank you! So glad you are back to work, just remember to take care of yourself and don't overdo it!
pbrain - don't worry about the beard and manly voice - my ovaries are long gone, my voice is normal, no beard, but I do have a little mustache. The good news is that the Oil of Olay mustache remover stuff works great!
My onc does CEA, CA27/29 at each appt with him (just moved from every 3 months to every 6 moths - yay!) and a PET scan annually.
0 -
It's late and I'm looking at breast cancer news on Google. This caught my eye because I have it on a list of things to talk about with my MO.
Metformin Fails to Improve Survival Rates in Breast Cancer Patients
0 -
LeeA,
Thx...metformin was on my list of questions too.
However this one is looking very good on the metastatic front...." potentially practice changing" and it could be available immediately! From the Bolero trials...
http://www.onclive.com/conference-coverage/asco-2013/Dr-OShaughnessy-on-Everolimus-in-Breast-Cancer0 -
LeeA note at the end of that report on the study it states:
"The authors note that further research is needed to account for potential effects of cancer stage, BMI, age and even non-diabetic status of individuals in order to determine an association with the use of metformin."Given that many diabetics are overweight, the study group was over 60 probably post menopausal) the extra weight could offset the benefit.
That's why reading 1 study, especially one that says "further research needed" doesn't mean much to me anymore.
0 -
Hair fell off during chemo, onc later changed to another med due to neuropathy, ER/pr-HERS +, now on oral chemo pills, hair grows back, has anyone use hair coloring products, any recommendations, many thanks.
0 -
Maggie the cat---Love that name and movie LOL U can use any type of hair color actualy I didmine right away --my DD did go to the supply house for reg. hair dye stuff and it was no problem. Of course now I'm feeling silly my hair is mostly white with some brown streak in it and I have gotten the different color chalks for highlights an I match my highlights with the same color nail polish on at least one finger (pinky on each hand) silly I know but I have fun with it. Do something fun and different my kids think I've gotten crazier but I don't care really.
0 -
Re: one study saying one thing - and another saying another - I was just googling beta blockers while I was on my cell phone.
Lots of "yes, beta blockers may reduce the risk of recurrence" and then bam, a May 21, 2013 article about a study out of Denmark (apparently they have a nationwide databank of patients?) showing beta blockers do NOT reduce help the risk of recurrence.
Reminds me of the time I saw an article about celery reducing the risk of cancer. A few pages later: "can celery cause cancer?"
Example:
May 13, 2012 - (Reuters) Beta-blockers tied to breast cancer survival
May 21, 2013 - (Reuters via NewsDaily) - Beta-blockers do not reduce breast cancer recurrence risk
0 -
I dyed my hair professionally at 13 weeks PFC. Use the same stuff we used before but had to adjust the color a bit.
0 -
Pbrain, I too have been overweight - more than you. I would be good if I lost 60 or more pounds. I recently consulted a nutritionist - she had me fill out a 5 page questionaire - and keep a 4 day food diary which I sent to her with some recent blood work. When I spoke with her after she reviewed the info she said that my symptoms (thinks like food cravings, low energy, joint pain, etc.) screamed "insulin resistance" - and that too much insulin has been fueling the cancer. I've always been a "grazer" eating first thing in the morning - snacking - eating lunch - snacking, eating dinner, snacking in the evening... never eating a lot at once, but constantly picking (and eating healthy things, like apples, nuts, etc.) I've also always eaten a very healthy diet - big garden - cook all meals from scratch - no junk food... anyway, she said that for me, what I need to do is "intermittent fasting" where I limit my eating to an 8 hour period during the day.... fasting for the other 16 hours. It has been an easy adjustment... and I'm all of a sudden losing weight and not having cravings. For me, I think that I need to eat this way for the rest of my life. Cancer is a very big motivator.
Wish I was more healed from the lumpectomy. When I look at everyone's tags at the end, I see so many mastectomys, and fewer lumpectomys.... my surgeon said that outcome would the the same... (he also said that the outcome would be the same whether I took out the rest of the lymph nodes or didn't do any more surgery - 1 positive sentinel node). Since I was very large (extremely large) breasted, I had a lot to "work with" and had a reduction at the same time as the surgery.... Still have stitches 3 weeks later and about 18 inches of incision... still a lot of swelling.. still sleeping in a chari... sigh... although starting to get some energy back (had a collapsed lung which I think set back the whole recovery process..... anyways, getting stitches out this week and starting the dreaded chemo next week.... making myself a little crazy researching what things are good and bad during chemo - things that can either inhibit or enhance the effects - there is so much conflicting information out there... also read her about biotin for preveting hair loss, think I'll try that... the ice cap sounds worse than hair loss!
0 -
can someone tell me where to get this magic mouthwash?
0 -
my nutritionist said that the intermittent fasting will do the same thing as the metformin (reduce insulin) and that metformin can have some pretty bad adverse reactions.
0
