How many have had second or third tumors switch status?
Comments
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Now that I so clearly understand that a recurrence is possible, I am wondering how many of you have had a recurrence that switched hormone status? And has the grade changed too? Is this a common or uncommon event? I also am trying to understand that if I have another lump in a breast is it still 80% that it may be benign, or is that % now very different since I have been diagnosed already? If so, what is now the new percent? I appreciate any answers as I am clueless.
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It is very individual but i was told that most hormone dependent cancers find a way not to need hormones as fuel after ten years but that does not mean recurrence is inevitable, just that if it does this change in hormone status is common
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My bone mets are e-,p-,her+. My original was triple positive. So yes it can switch.
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Lily - Thanks for your answer. When I would see that people had a recurrence I would look below their post at their diagnosis to try and figure how many had a hormone reversal but many times that information is not given. I had never heard before that hormone dependent tumors can find a way to exist without hormones however I have read that some women on tamoxifen have a tumor that is hormone negative show up in the other breast. I assumed this was a possible side effect from the tamoxifen.
fujiimama - I see that you list your hormone status below your signature, thanks, not everyone gives this information. Perhaps it is not relevant but it is interesting as to how this happens.
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My original DCIS in 2005 was ER+ PR+. My "new" DCIS was ER- PR-. The new IDC was ER+ PR+ Her2-. My MO considered the recent tumors as new primaries, not recurrences because of the change in ER/PR status. I have no idea what that means in terms of changing percentages, but thought I'd add my experience.
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This is my second recurrence and this time the cancer has switched to HER2-. I am not sure if this means I have a new primary cancer or not. I was supposed to begin my chemo on July 18th but that was put on hold as my oncologist wanted to do more testing. I was supposed to get herceptin, perjeta and taxotere. Now that has all changed. Going in on August 1st to discuss treatment options.
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BabyRuth - Thanks for adding you input. I am so sorry that you again have to deal with another recurrence; it sounds as if your oncologist is trying to put the best plan together for you. I admire the fact you have dealt with not just one recurrence but now another. Is it not a good thing that you are now Her2-? A recurrence is something I fear so perhaps you can understand why I posted the question in May. Hopefully your protocol this time will be easy on the side effects; sending good thoughts.
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MNSusan - Thanks for responding to the question. I am not quite sure how frequently this happens but I find it scarily fascinating. I often wonder if they will ever figure this breast cancer puzzle out. Sending good thoughts.
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My skin around my foobs was red post reconstruction. We tried antibiotics for a while thinking it might be infection. Finally, we biopsied the site. It was local recurrence the chest wall. Even my surgeon and plastic surgeon at mskcc said they had never seen anything like it. I was triple positive at diagnosis. 6 months later I was ER and PR negative but still Her2 positive. My cancer changed. Don't doubt it. I'm only happy I hadn't decided on treatment by then because tamoxifen would have been unnecessary and I would have lost my fertility
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I was diagnosed with Stage IIIa ILC of the right breast in 2000. Tumor was ER+/PR+/HER2+. Had a modified radical mastectomy with axillary dissection (6/16) followed by 4 rounds each of A/C and Taxol and six weeks of radiation. Five years of Tamoxifen. For twelve years I had NED but in July, during consulation for lymphedema, I called the doctor's attention to a swelling under my right collarbone. An ultrasound led to an MRI which led to a PET/CAT scan and several biopsies. Two weeks ago it was confirmed that I have a tumor in the pectoral muscle just below my right clavicle, and it is triple negative. I started Gemzar/carbo last week. My surgeon says she has only seen this happen twice, but my MO doesn't seem to think it's that unusual--but then he seems like someone who has seen it all and is not fazed by anything.
But I think it is interesting that there are not many posts on this thread. That makes me think it's not common.
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I recently was Dx'd with TN cancer.... 2006 my cancer was triple positive. I go to MSKCC tomorrow for a consultation with a surgeon... I figure my only choice now is a double mast, but i am terrified of the surgery. Not sure what my chemo will be as I have already had AC chemo and they can't give you the same chemo twice. Dorian- I see you had carboplatin and Gemzar...will be interested in what they tell me....
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Hello: My original cancer 2001 was ER/PR + I had a recurrance in the mastecomy scar 2010. Triple negative. I have asked many questions and been told it happens. But I cannot help wondering, how many results are false negative and/or false positive. No matter how great the hospital you are being treated at, it cannot be 100% accurate..
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VirginiaNJ,
My surgeon recommended neoadjuvant therapy in the hope that they could avoid more surgery. I've had one complete round of the Gemzar/carbo (First week, both drugs. Second week, Gemzar only. Third week, no treatment.) and will start the second round next week. I am convinced that I can feel the tumor shrinking already. What did the folks at MSKCC say? Are they recommending surgery? How are you holding up? -
char123,
My MO thinks that perhaps there probably always were a few TN cells but that they were knocked into hibernation by the original therapies, which destroyed all the E/P/HER2+ cells. For some reason the TN cells have now come back to life. It sounds plausible to me. -
Rachel - I was so naive at the beginning of my bc diagnosis and assumed that have er/pr+ meant that should I recur it would be the same hormone profile; it was not long before I realized that breast cancers could change status. Initially no oncologist ever really answered this question for me but it was here on bc.org that I learned how quickly the status in subsequent tumors could change. It sounds as if you are young and I wish you good luck with your treatment.
Dorian - How much does that suck to have gone so long without a recurrence..... I am only out 4 years and so 12 years NED sounds wonderful. Wishing you little to no side effects with your new treatments. Another bc friend once told me to just expect it to recur and then I wouldn't be so devastated. Not sure I can wrap my brain around that logic.
Char - I too have wondered how many mistakes have been made in a diagnosis. They found one lymph node to be positive and when I questioned what size it was (it was not on my path report), I was told that it was seen in the frozen section only and when that melted no measurement could be made. No bc was found elsewhere in that node or the 13 others that they removed. Still hard for me to believe that it wasn't measured.
Virginia - Wishing you the very best in your upcoming surgery. What chemo did they decide to recommend?
Thanks to all of you for taking the time to respond the the initial post question. Sending good thoughts...... -
Dorian: I think that your MO is probably correct. It almost has to be. -
New primaries can be anything. Mets can change characteristics even while being treated. As you notice, mine was a different grade but as a general rule, in older women they tend to be similar but not always. -
Thanks bluepearl for your input. I am an older woman (age 69 at diagnosis and now am 73), so your comment about a dx of older women tends to be similar was an interesting piece of info for me to read.......however I do realize you have also stated that this is not always. -
Sorry for the delay in responding....it has been a very busy few weeks! I had my surgery on 10/16 - a double mast with immediate recon (TE's). I am recovering quite well and have been walking 2-3 miles per day since a couple of days after my surgery. Had my drains removed last Thursday (10/24) and both surgeons were very pleased. The surgeon said that most of my cancer/tumor was removed by the biopsy (the same thing happened with my first cancer).
Holy moly tho- I never had any surgery other than the lumpectomy - this one I felt like I was hit by a Mack truck. I can't even imagine how grueling the recovery is for the tissue transfer surgeries...
I haven't met with the medical onc yet - I see one at Sloan on 11/4. I have been treated here in NJ for the past 7 years by a local onc who did her fellowship at Sloan...just figure it wouldn't hurt to have a second opinion from Sloan even if I most likely will stick with my current onc (love her) and do chemo in NJ. -
Virginia - Thanks for getting back to let us know how the surgery went and how wonderful that you seem to be responding well. Everyone is so different when it comes to surgery as I have a friend that went through a double mast. and had absolutely no real problem. Yet another friend has had nothing but problems and her surgery was 15 months ago.
Please let us know what your MO recommends for your treatment. I send good thoughts and health for your continued speedy recovery. -
thank you Barbara- I will def let you know. I see my local onc on Nov 7th.... I had nodes removed from both sides and all were negative....also PET pre surgery was clean except for the BC.... really wish I could skip the chemo lol -
hi Barbara- I was given 2 options for chemo - CMF and TC. I chose the TC bc my onc in NY said it was a "bigger insurance policy" than the CMF. i will have 4 cycles 3 weeks apart and will start this Monday. -
VirginiaNJ - Thanks for your post. May I ask how old you are? Any recurrence so totally sucks. You sound as if you have taken this all in your stride and that you are eager to move forward with the suggested protocol. I will be thinking of you and sending you warm wishes for no side effects (or at least very few). -
I am 47 - first dx was at 40 --- lost mum mom more than 30 years ago from BC - she was just 53. Sadly BC has been at the forefront of my mind for a very long time
Thank you for your note....all I can do is fight fight fight...like all of us here!
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I am so sorry to read that breast cancer has been such a big part of your life. You are still so young (the same age as my eldest) and yet so resilient. I admire your moxie.
Has your medical team given you any insight into why they think the hormonal status has changed? The switching of status has intrigued as well as scared me. I wish they would pin down some of the haphazardness of breast cancer but so many studies end with.........."we need more studies to confirm whether this is true."
Thank you for sharing your experience and let us know how your treatment progresses; I will be thinking of you on Monday. Good thoughts. -
unfortunately there really is no clear answer... The fact that the cancer came back as TN means the Tamoxifen worked... Tho- they cannot definitively say that this cancer is not some rogue cells that were left behind in 07 - tho I truly believe that is unlikely... I also am BRCA negative which really flummoxes me. Guess I'm just unlucky. I am anxious to get started and put this phase behind me. Once again, thank you for your very kind words!!! -
This is in response to Dorian. My new BC cancer was 2 tumors between my pectoral major and minor muscle. Woke up one day and hugh lump appeared overnight just below my clavical. It was 11 centimeters when they did ultrasound that day. Biopsy came back triple negative. (my first cancer in 2005 was ER+) Doctors are not 100% sure if its recurrance or if its a new primary. They say they can change to negative. Not sure it if really matters. 8 rounds of Chemo totally shrunk that puppy, almost to nothing. Surgery after A/C & Taxol chemo showed ZERO cancer left in both tumors..... YIPPEE -
Sandy, that IS Ama-Zing! Must have been a very frightening start, but a very good end! I had A/C and Taxol the first time round (with the ER+ diagnosis) but this time they are giving me Gemzar/Carboplatin. I'm finishing up my fourth round (out of a proposed six) tomorrow and have a PET scan scheduled for Friday. I hope my news is as good as yours. What did they do during the surgery you mention? Was it essentially a biopsy to verify that the tumor was gone? My medical oncologist told me last week he doesn't anticipate any need for surgery but does anticipate radiation therapy, which I am not looking forward to since it will involve a one hour driven every day for six weeks. -
I was just diagnosed today with breast cancer for a second time. My receptor status this time around is triple negative. My first breast cancer in 2005 was er+,pr+ and her2-
My tumour was discovered in the pathology from a prophylatic masectomy with DIEP reconstruction on Dec 16/13 due to high risk family history of breast cancer. In the past three years I have had my youngest sister diagnosed with bc in 2010, she died in 2012 and the final straw for me was my older sister diagnosed in July 2013. I decided that I had to get rid of my ticking time bombs...I only wish I had decided to do this surgery when I was first diagnosed in 2005.
My tumour is .9 cm this time around (in 2005 it was 4cm)...again it is invasive. My Surgical oncologist said that I would need chemo.
I am pissed, angry, want to throw something...its been eight years since my first diagnosis. Cancer has taken my baby sister in 2012 as well as my father in June 2012 and many other family members over the years.
I will find out my treatment plan and what type of chemo I will be on once I have the appt with my regular oncologist. The surgical oncologist is the one that did the masectomy part of my surgery (she practices at another hospital in another city). All pathology reports, etc are being sent to my oncologist along with a referral as I was released from his care to my regular GP after I hit 5 year mark.
Michele
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I too just had a new primary after a lumpectomy in 07 that was triple neg. with 33 rads treatment & clear sentinel node (5 removed) biopsy grade 3
09 the same cancer returned and the breast had to go. It was her2 + (probably because there were improved tests) 16 lymph nodes were clear.
Had taxotare, carboplatin and herceptin as chemo regimen
3/14 just diagnosed with a es+ and pro+ cancer in other breast. Had mastectomy with no cancer in nodes. Considered a new primary
Am waiting the pathology to learn the her2 status of this new breast cancer. My onc promised some form of pill for the hormone positive aspect. This cancer
was found early grade 1. Weirded out that its an entirely new cancer; what's that all about? But my onc says this is the most common bc
and has more targeted drug options to choose from. I'll be on Arimidex for 5 years since this time the cancer is hormone positive.
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