TRIPLE POSITIVE GROUP
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Thanks, I got what these creations are and how they are made. Very, very, pretty.
Vicky
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hap - what does your MO say about Tamoxifen for you considering your medical history? My MO did not encourage the switch (I asked about it after five years of AI drugs) because there is thought that Tamoxifen doesn't work as well as AI drugs in Her2+ patients due to the signaling pathways.
posey - thanks! Also, love the felting - so cute!
I have a lot of pollen allergies (actually a lot of allergies to all kinds of stuff, lol!), but I find that in the spring and fall when pollen is rampant that I get headaches almost daily. If I take an antihistamine - usually Claritin - I don't have as many.
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Posey, that's AMAZING work! My felted pieces look like bad dog toys, lol. Awesome stuff!
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hap - I suspect your MO is feeling that some ER modulation is better than none, and there is also thought to be an effectiveness relationship to levels of both ER and Her2+, so if not strongly one or the other, or both like I am, your MO may feel that Tamoxifen is a viable option.
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hap - the majority of older women (post-meno) with breast cancer are not taking Tamoxifen, they are on an AI. The ones on Tamoxifen are usually those with osteoporosis and not on a bone builder and those for whom AI side effects were too much - but I am not sure it is a large enough population to warrant separate stat collection and study. Data collected regarding older women and clot risk would be data that was collected prior to the advent of AI drugs, but it might not be that hard to find. Since your ER percentage is higher I would think that potentially represents your greater recurrence risk.
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hap - cancer, for the most part, is a disease of aging. For most of us as the body ages it gets less effective at basic process, partly because of the slings and arrows of life, and partly due to time. Our eyesight diminishes, as does hearing, some people become anemic, etc. The majority of women with breast cancer have estrogen receptors on their breast cells. When whatever the process is that happens to cause breast cancer by damage to your DNA - and it is not the same for everyone, those receptors are then fueled by estrogen. It is not necessarily that breast cancer happens because of estrogen, it is that breast cancer happens for whatever the reason, and whatever estrogen we have available fuels the cancer to reproduce. In the case of Tamoxifen, circulating estrogen - from whatever source - continues, it is the receptor on the breast cell that is blocked. In the case of aromatase inhibitors, estrogen to fuel the breast cell is suppressed by inhibiting the enzymatic conversion of androgens to estrogen. It is assumed that estrogen produced by ovaries is already at a minimum due to menopause or ovarian suppression for pre-menopausal women electing to use medication to stop ovarian function. HRT is linked to breast cancer, but certainly not in everyone who takes it. I don't think you can draw a straight line between the two, but I think you can say it heightens risk, or accelerates the process for some women. The combination HRT estrogen and progesterone was associated with more cases of breast cancer than the estrogen only version of HRT that women who had a total hysterectomy took. There is no denying that AI drugs have side effects, as any drug does. They can cause bone thinning - that has been established, but that doesn't happen to everyone. Tamoxifen, in post-menopausal women, is thought to be bone strengthening though, but again, not universal.
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Hi dear ladies,
I need your advice. I finished chemo and got an MRI. Paid a visit to the surgeon who said the results are "very encouraging". We discussed surgery and he is telling me that axillary lymph node dissection is a given in my case, and for the breast surgery, he is giving me two options:
1. Lumpectomy + radiation
2. Mastectomy
I feel I am unable to make an informed decision. Part of my confusion is that my oncologist says that a mastectomy makes more sense for me, whereas the surgeon says that the lumpectomy + radiation makes more sense for me. The surgeon says the the data doesn't show a significant difference in risk of recurrence or long term survival between the two options, so why go take the most radical option. Given this contradiction, I pressed the surgeon for the data and the facts supporting his view. He gave me a few printouts of papers, but they are very very very generic studies and conclusions, not broken down by type and subtype of breast cancer or age or stage at diagnosis or anything. I don't see how what he gave me can help me make an informed decision. And I am kind of annoyed by these two guys (surgeon and oncologist) suggesting that it all boils down to how I "feel" about having or not having this boob or how I "feel" about recurrence worries. I don't know how missing a boob will feel like. About recurrence worries and peace of mind, it would depend on the data and it doesn't sound like either of them has their story straight on this. Keeping the boob sounds great but my tumor did not show up on mamograms or exploration until it was stage IIb and already in my lymph nodes so of course I worry about keeping all that breast tissue.
I have been reading in the surgery section of this board and I think I have covered most of the relevant threads on lumpectomy vs mastectomy. Since some of you triple positive ladies have faced this decision before me, I was wondering if there is some evidence specific to our triple positive condition that I should know and could influence this decision?
Help!
LaughingGull
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LaughingGull--all I can say is this is a decision that most of us have to make. There are women who are concerned enough about recurrence, regardless of the probabilities, that they just want the dang things off. I'm in the other camp--that as long as I can keep my breasts I will. I did not make the decision two years ago based on numbers (and beLIEVE me I am a numbers gal); ditto this time around. I'll have lumpectomies as long as it's an option, but that's just me.
Can you take a day or two to sleep on it/ponder it? Bottom line is think you need to be comfortable with whatever decision you make. Second-guessing doesn't do anybody any good. Wait until you arrive at some clarity/certainty regarding your decision.
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Coach, I'm looking forward to meeting your friend and sharing experiences with her. It's probable that we've had treatment in the same hospital, and may even share an onc! It's a very small world sometimes.
Trish
xoxo
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laughinggull - I was initially offered a lumpectomy and rads by my very experienced oncological breast surgeon, who was previously a long-time head of surgery at an NCI center. I had a bit of time to think about this between my initial consult with him and when I needed to tell him what my decision was because I am adopted and he insisted that I have BRCA testing results before surgery, as that would have informed a different surgical recommendation from him. I decided on a double mastectomy for several reasons - I had a fairly large tumor, palpable and at the outside upper quadrant of the breast - a lumpectomy with clear margins would have taken half the breast and caused the nipple to point toward the underarm. Secondly, my large and palpable tumor was not seen on mammography - ever. Even the one I had that was instantly followed by ultrasound that did show cancer. After diagnosis I even went back to thank the radiologist who set up my biopsy to let him know I had been diagnosed - and thank him for essentially saving my life because he was not at all sure it was cancer. He invited me back to review my mammo films once again - and still saw nothing. I have had multiple painful cysts in each breast for at least 20 years, there were several in each breast at the time of mastectomy - I can't tell a harmless cyst from a tumor and did not want the level of needed surveillance to determine that going forward, and knew that I would be edgy about any new cyst. My surgeon was very accommodating, indicated he would do whatever I wanted - which was a BMX, and then showed me a slideshow about skin and nipple sparing mastectomy - which I was a candidate for since I was a lumpectomy candidate. He set me up with a plastic surgery consult with a PS who could do that procedure with him. Immediately after my surgery it appeared that my nodes were clear based on pre-lim SNB, but further exam in the lab revealed cancer in my SNB. I had a stage 1 sized cancerous node that was never seen on any imaging, including MRI, and was non-palpable. My cancer breast had 2.6cm of IDC, abundant DCIS next to the IDC, with cancerization of lobules. My non-cancer breast pathology revealed previously unknown extensive ADH and ALH, so it is quite possible I would have had a new primary down the road on the other side. Even with the reconstruction complications I have had I would make the same decision again, with the possible exception of doing nipple sparing. Initially it was comforting to look pretty similar waking up as I did when I went to sleep, but it became problematic during my recon issues - I have neither nipple now. I would probably opt for 3D tattoos if I knew then what I know now. I think your tumor size relative to breast size should be a consideration in the decision, but I am unaware of anything specific to being TP that makes one option superior to the other from a treatment standpoint unless you have multi-focal tumors, or additional scattered DCIS that could be missed in a lumpectomy. That your tumor was not seen on mammogram until it reached a later stage size is a potential issue in monitoring for either a new primary or a recurrence going forward. There is little difference between BMX/MX and lump/rads in overall survival, but local recurrence is more common with lumpectomy, so DFS is not the same. I was unwilling to allow that much breast tissue remaining when I had such an aggressive cancer, don't image well, and had complicating factors like cysts, my post-op findings confirmed that it was the correct decision medically.
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I took birth control pills until menopause at around 48. Also went from osteopenia to osteoporosis during that time and took and variety of "bone pills". I took prempro HRT but got fibroids so had complete hysterectomy and continued with just Premarin until b/c dx. My onco said the same thing that Hap's did. There is no benefit to my having any surgery other than a lumpectomy, TCH, rads and Tamo. No history of any kind of cancer in my family but as stated before in other posts, I had one helluva childhood, exposing myself at an early age to everything that we now know causes cancer. Who know why I got so lucky...but I'm in great company here. My dx is almost identical to Hap's as far as I can tell.
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LaughingGull - The thread linked below is for women with DCIS, but you might still find it helpful because its title is "lumpectomy vs mastectomy - why did you choose your route?" and there are many, many replies, including a wonderful post from Beesie with a list of considerations for those making the lumpectomy vs mastectomy vs. bilateral mastectomy decision. https://community.breastcancer.org/forum/68/topics/806074
I am triple positive, and was told essentially the same thing as you re no "significant difference in risk of recurrence or long term survival between the two options" by my surgeon. Although my genetic testing results were negative, I have a family history of breast cancer.
I chose to have a bilateral nipple sparing mastectomy with over the muscle direct to implant reconstruction. It was a SINGLE surgery, performed by my oncoplastic surgeon. (And was initially supposed to be a "one and done" situation for me; i.e., surgery only, with no chemo necessary.) I am very happy with my results and would do the same again.
My decision was in part emotional; it simply provided me with more calm and peace of mind. That also turned out to be the right choice in my case, since the post-surgical pathology report found more extensive and more invasive cancer than any of my imaging had shown. (Which is why I ended up having to do chemotherapy.)
Take a few days and see how you feel as you consider each option. One will reveal itself as being most right for you.
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LaughingGull, my onco and BS both said a lumpectomy and rads would be fine after I did neoadjuvent chemo.MRIs ,sonagram and blood marker tests all said it was gone. So I had a lumpectomy. A week later they called and said there were no clear margins, cancer still present so I would have to have a mastectomy. I chose BMX because now I don’t trust the MRIs or any of the tests. My pathology after the BMX came back with my cancerous breast as being cancer free and my other breast which never had any issues, had DCIS present so my BS was very happy that I chose the BMX. I had Diep flap recon and just got my 3D tattoos which look great. No problems with my recon and NEver needed radiation.
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Hap - Just want to be clear that it is not always true as you stated above that "A mastectomy is radical... [and] will require multiple surgeries and associated risks of surgery." My mastectomy and reconstruction were done as a single surgery, which I would not describe as radical. Not all women are candidates for the surgery I had and not all surgeons do it, but it is becoming more commonly available.
Please be careful in making broad statements, particularly when providing advice about something that you yourself have not recently experienced. Medical and surgical advances are occurring all the time, meaning that options are also constantly changing.
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Didn't people use the term "radical mastectomy" a long time ago for someone who had to have "the works"? Maybe that's where the confusion lies. Anyhoo...about 5 years before BC dx, I had a breast reduction and implants at the same time. Small D to large C. The incisions beneath both breasts split wide open. My skin where it was sutured could not support the weight of the implants. Not pretty or fun. It took months to heal. I, myself because of my own experience, would wait to heal before either implants or TE's.
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A “radical" mastectomy (Halstead) is the type that used to be performed years ago. This type of surgery took breast tissue, skin, pectoral muscle, lymph nodes. The mastectomies done in most cases today are “simple" mastectomies that remove breast tissue, do not remove the pectoral muscle, mos have skin sparing, and a SNB rather than all nodes removed in the initial surgery.
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Dear ladies,
Thank you, thank you, thank you all for your responses. I was drowning in worry and anxiety. I feel much better now, just by seeing how I am not alone.
SpecialK, your case is very similar to mine. I have also had cysts forever, which is why I have been religiously doing the annual breast checks, with a breast cancer surgeon no less, for the last 15+ years. First we used to do ultrasounds, then I upgraded to mammograms, then 3D mammograms, always very thorough examination, the last one three months before I found the cancer myself. And for what? My cancer never showed up anywhere. Even after I found it myself and showed it to the doctor, I went for a diagnostic mammogram of the area and they couldn't see anything. The final report of that mammogram says something to the extent that they could see some "distortion"....and the tumor was big and palpable and so were two affected lymph nodes, the surgeon had already told me he had no doubt this was cancer. I don't see how this situation is comparable with the stage zeroes or ones, and how taking a scoop is going to keep me safe. I feel like my surgeon is shooting from the hip with a general recommendation without giving any thought to all this history.
Thank you HapB and Ingerp for your perspective too.
Blownaway, you have gone through a whole lot of suffering.
Magari, thanks for the link, I am reading that thread. I will check that type of reconstructive surgery too.
LTWJ, wow. I also feel like I cannot trust the scans. So I am supposed to go with a lumpectomy, leave most of the breast tissue there, and going forward, just trust the same scans and surgeon who never found my cancer despite all the checks. Happy to hear you are happy with your BMX.
I am going to talk to a plastic surgeon next week to get a better idea of my options for reconstruction. And I am trying to schedule an appointment for a second opinion on lumpectomy vs mastectomy at a major cancer center to try and get the story straight and some meaningful advice. But I am leaning towards mastectomy.
Dear all, thanks so much for sharing. What a lot of crap we go through.
Love and peace,
LaughingGull
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And the surgeon also told me the axillary surgery is a full dissection, i.e. they will take a big scoop with all the fatty tissue and lymph nodes in it and dissect it later. I thought the axillary surgery would be more like cherry picking. I am terrified about the lymphedema risk.
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laughinggull - if you are IIB that means up to three pos nodes - why is your surgeon planning ALND if you had neoadjuvent chemo? Has there been any discussion of SNB, status check, and maybe rads to the axilla? I apologize if you explained this earlier - what is the rationale for removal of that many nodes? I have had ALND, it is a bit more precise as most OBS will remove levels 1 & 2, not just indiscriminately scoop, but you are correct in that pathology is done in the lab later
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Hi SpecialK,
When I found the cancer I also found a lump under my arm which was biopsied and came back positive for cancer, so no SNB discussion, my lump was made of two nodes very close to each other, and they have already been biopsied.
In general, the surgeon has been reluctant to discuss any surgery until the chemo was done and I got an MRI. So today was the only discussion, and he told me that the axillary surgery is "a given" and he described it as a scoop. I was so petrified about the lumpectomy advice that I didnt question the scoop until I was out of there. So an ALND is not an indiscriminate scoop? Now I wonder why I can't get one.
Geeez this is so stressful.
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laughinggull - ALND does remove lymph nodes en masse from a specific area, it does not sample within a level. Lymph nodes are contained within a fat pad and the nodes themselves are somewhat obscured within. Here is a diagram showing the axillary levels. Within each level can be varying numbers of lymph nodes, possibly just a few as in my case, or there can be many. The opposite is true for Sentinel Node Biopsy as it uses dye/tracer to identify the node(s) closest to the breast that are most likely to contain cancer by coloring them or depositing tracer within. You will see in signature lines that some have just one removed, some have a few more. Because the nodes are contained in fat the surgeon usually does not know how many nodes are in the spot that takes up the dye/tracer
If I were in your shoes I would ask any second opinion surgeon what their philosophy is on node removal for a patient with your clinical features.
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Thanks SpecialK. So we are talking about the same thing, he described to me the removal of the fat pad where the nodes are, this is what I called a "scoop". He simply told me it was "a given" and I didn't question why. I am in the process of asking for a second opinion so I will add this to the list.
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hap - thermography is not FDA approved, and not recommended to be used in place of mammograms. If you do surveillance with thermography it is recommended to be alternated with mammogram at a minimum. My only experience with it is from a friend who used it, had a clear one - which I have seen -when in fact she had very aggressive breast cancer that was undiagnosed until it had reached stage IIIC.
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LaughingGull, I did neoadjuvant chemo and had a BMX with immediate recon. The surgery started with an SNB. They tested the nodes while I was on the table and took 4. The first pathology came back negative so additional nodes were not taken. The wildcard was waiting for final pathology which would drive the need for additional nodes to be taken later or radiation. I lucked out and avoided both.
I hear you about how no one wants to talk about surgery during chemo. I insisted on several appointments with the plastic surgeon during chemo. The protocol I describe is available at a large teaching hospital. I don't know if that same process is prevalent in smaller cancer centers and hospitals but imagine it should be.
Your location is not in your sig line. If you want to keep that private you could PM some ladies on this list for suggestions. A second opinion does not hurt. Most breast surgeons are very precise about node removal. They want to get what they must but don't want to ruin your quality of life. Please keep asking questions. It takes a while to figure out your situation. Everyone is different. Everyone here helped me through making the decisions. I've had my problems but still remain comfortable with my decisions. Hang in there.
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Hi ladies
When I was diagnosed in Sep 17, MO said that after chemo and surgery, I need to do Herceptin for a year (17 times with 3wks interval). Since then, I've read that some have Herceptin + Perjeta for a year. I've an appointment with MO 11Apr. Under what circumstances does the MO determine to use just Herceptin or Herceptin +Perjeta?
Thanks HepB for the informative Dr Li 's video.
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SpecialK ...you make everything make sense. Thanks for the estrogen explanation. Wish my former MO could have explained it that way.
LaughingGul… I, too, am a numbers girl. I am the statistician by job and degree in our business. However, when it came to this decision it was truly a gut reaction. My Breast Surgeon (Dr Z) recommended mastectomies from the beginning and he also said he would remove as much tissue as necessary if I did not want the mastectomies. He said he could not guarantee that he got all the cancer but he would do whatever surgery I wanted. It was my choice. When a 4cm lobular carcinoma was discovered by MRI (never seen on mammogram) in the prophylactic breast, his tuned changed. We all knew (my husband, Dr Z, and me) that these were aggressive and fast growing cancers.
About my former breasts ... I loved them. The were huge, soft, lumpy, uneven, and very much a part of my sexual satisfaction. I cried for hours with my husband over losing my nipples. I cried in front of Dr Z over this to the extent he said it was OK to cry and go on and on about my nipples. He said "I like nipples." I think he really understood the deep emotional part of this decision.
After one of my very first mammograms, a radiologist asked me if I have considered mastectomy and implants. He said "these breasts will give you trouble all of your life." I have always remembered his statement. My breasts gave me trouble all my life. They were dense making my mammograms hard to read. The lumps hurt. Like SpecialK, I could never tell an OK lump from a bad lump. Bras were had to fit into. But they were my breasts and I once loved them.
At some point after diagnosis and before my surgery, I stopped crying and realized my breasts could kill me. I knew I would never have peace if I tried to save them. I grew to hate them and wanted them gone. My surgery could not come quick enough.
Dr Z anchored me to this statement: "You will have 18 year old boobs." That may sound silly but he focused me on not what I would lose but what I would have.
I am very fortunate. My breast skin was saved and I have feeling. I only have slight numbness on my back left upper arm. My Plastic Surgeon created skin nipples. It was important for me to have something to touch when I showered. After 3D tattooing, the nipples and areolas are rosy and better looking than the original ones. I think my Plastic Surgeon is a small boob guy. He wanted me to stay around 450cc - 500cc. I talked him into 600cc and I really like my size. Had I known I could have what I have now, I would have listened more carefully to the radiologist years ago. My hindsight is always 20 / 20. LOL.
Like SpecialK has shared, this is a very personal decision based on each of our situations.
Ingerp wrote, she has peace with lumpectomies. I wish I had her strength. I didn't. If you can take the time she recommends, please do so.
Study the article HapB gave the link to. It is a very good reference.
A couple of things to consider:
Make sure your breast surgeon and plastic surgeon are VERY clear as to how much tissue will be removed if you have a lumpectomy or mastectomies. Have them draw a picture of how you will look afterwards. I had my DH make a photo of my chest. Dr Z and my Plastic Surgeon drew lines showing where I would be cut what / how much would be removed. When I look down, my scars are underneath and out of eyesight. That one factor stops me from the daily reminder of breast cancer. If your surgeon or plastic surgeon can not tell you or show you this, consider getting a different medical professional. DH and I walked out of the first plastic surgeon with my DH saying "you will never touch my wife." Remember this is your body and you will live with the surgeries long after these people are out of your life. Dr Z cut for my first lumpectomy along the side of my left areola. Once healed, it was barely noticeable. When testing my lymphs, he cut at the bottom hair line. These are also barely noticeable today.
What is your history with decision making? Are you a second-guesser? Do you worry after you make a decision? If you are going to spend the rest of your life worrying about was a lumpectomy right or should I have done the mastectomies, I would encourage you to seek professional counsel before making your decision. I had a counselor early on that helped guide me through the grieving process.
If you have the mastectomies, how much follow up will you have with your Plastic Surgeon? I am assuming you will have immediate tissue expanders. My PS had me in his office about every 72 hours for the first couple of weeks. He was strict that I would have my arms immobile as well as sleep in an upright position. Let me be clear, you will be physically limited with a mastectomy. I could not cut a piece of meat without pain. I share this in full disclosure: A mastectomy is an amputation of your breasts. I had a hard time accepting this.
Make sure you read WhippetMom's Implant forum if you decide on mastectomies. Study her forum BEFORE you decide. Know exactly what your PS is going to put in you. Some PSs take a couple of implants to surgery in case one won't work. You want to know what you are waking up with. To fit the 600cc in me, my PS had to stitch a lattice-work patter down my side. He did it and I am sure it would have been easier if I had gone smaller.
Will your implants be under or over your pectorals? If under, there may be some muscle distortion when you move in a certain way. I forgot to ask about this and in hindsight would have preferred over and not under. It is not a big deal, however.
If you have the mastectomies, have professional pictures made of your breasts. Trust me. You will forget how they once looked. I have looked at my pictures only twice. It helped me realize that I really don't miss them. Since I got my 3D tattoos, I have found myself raising my shirt and just looking at my new and completely restored boobs. I am amazed at how happy I am with the end state. It took 20 months from surgery to final reconstruction. That is a long boat ride. My tattoo artist wants a woman to wait 5 - 6 months after surgery before tattooing. I had a benign lump on a reconstructed breast which delayed my tattooing. The second delay was my skin nipple surgery.
Finally take 2 large sheets of poster / butcher paper and make a large T on each. At the top of one sheet write lumpectomy and on the other sheet write mastectomy. On the left side of each T, put a + sign and on the right side a - sign. Chart the positives an negatives to each. Yes, physically in your handwriting list the positives and negatives nor matter how silly or small each may seem. Hang these were you will see these often. This task can help you organize your thoughts / feelings and may make your decision clearer. You may find the positives to one out number the positives to the other and, yet, your gut tells you to go "X" no matter how many or few positives are listed.
Well, I hope something I wrote will be of benefit. Please know that whatever you decide, the women in this forum will support you and your decision. We have all been where you are. It is a hard gut-wrenching decision.
God blessings as you move forward.
Vicky
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Hi Peoy. I had 6 cycles of Perjeta last year. This protocol was the standard of care then for my diagnosis. I have read where others have perjeta with Herceptin for a year. One lady explained it was an off label use but approved by insurance and another was in a clinical trial. Wish I could help more. I have not read about any other FDA approved treatment plans with perjeta for early BC with a tumour greater than 2 cm other than 6 cycles.That does not mean it is not being done. You might try to post on a thread devoted to perjeta if you can find one. Best wishes.
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I am new to this discussion forum. I was diagnosed last year with Stage III ductal carcinoma, triple positive and was found in 6 of my lymph nodes. I am just about to finish up my Herceptin treatment in June and the doctor has mentioned the new drug Neratinib. It was just approved last year.
I was just wondering if anyone has taken it and how did they do on it. She told me about some of the side effects but wanted to see if I can find people that were actually taking it before making any decisions.
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peoy - in the US Perjeta was FDA approved in late 2013 for early stage neoadjuvent use with a taxane, for tumors 2.0cm or larger, or node positive patients. Some oncologists were able to obtain continued adjuvant use for high risk patients, but technically this was off label, and on a case by case basis if insurance would pay. In January of 2018 Perjeta was approved for adjuvant use so there will likely be more patients receiving Perjeta for the duration of the year with remaining Herceptin.
christa - welcome! I think there are a couple of ladies on this thread who have just started or will shortly start Nerlynx (neratinib), but here is a link to a thread about it with a number of people taking it: You can also look for posts using the search function on the left of the screen by typing in both drug names.
https://community.breastcancer.org/forum/80/topics/857091?page=1
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Thanks Special K. I am one of those IIIc triple positive people who is currently getting 4 doses of taxol/ perjeta/ herceptin, then continuing for a year with both perjeta and herceptin. Initially I was to get only herceptin, but Blue Cross approved/ according to those new protocols, adding perjeta to the cocktail as it decreases the percentage of recurrence for our oncotypes.
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