TRIPLE POSITIVE GROUP
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HER2+ means that your cancer has an overexpression of the HER2+ protein which encourages the rapid reproduction of cells. That is why HER2+ cancers are considered to be aggressive. Breast cancer cells can circulate throughout the body through your bloodstream and/or lymph system. If they find a new home (in the lungs, liver, brain, bones, etc.) they are still considered breast cancer cells. Herceptin and Perjeta are targeted therapies which block the action of the HER2+ protein and reduce recurrence. Hope this helps!
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Radiation is a guarantee with lumpectomy. It is not always necessary with MX. Chemo was only a possibility before the HER2 test came back positive and then the entire plan was scrapped and Chemo began. I was devastated but I am 1/3 of the way through now.
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Hi Chocomousse:
Size matters and the guidelines provide DIFFERENT recommendations based on size and nodal status.
For example, in contrast to your case of a 3 mm IDC (tumor ≤ 0.5 cm), many of the ER+/PR+ HER2+ ladies here have tumors greater than > 1 cm.
For hormone receptor-positive HER2 positive tumors greater than 1 centimeter, the NCCN Guidelines recommend:
"Adjuvant endocrine therapy + adjuvant chemotherapy with trastuzumab (category 1)"
That is the highest level of consensus under the guidelines (category 1), and all three interventions are recommended.
In contrast, for tumors like yours, the recommendation under the NCCN guideline is different. For ductal carcinoma (IDC) node negative (N0) tumors ≤ 0.5 cm that are hormone receptor-positive and HER2 positive the NCCN guideline states (emphasis added by me):
"Consider adjuvant endocrine therapy ± adjuvant chemotherapy with trastuzumab (category 2B)"
Note the differences in bold in particular. With these smaller tumors, the word "consider" is included, so adjuvant endocrine therapy (e.g., tamoxifen) is an option. In addition, there is a ± symbol to indicate that chemo and trastuzumab are not always recommended. It will be a personalized risk/benefit analysis for you.
I don't know if you saw my reply to you from earlier today. There is a link there to a thread for people with small HER2+ tumors like yours, whose situations are more comparable to yours.
https://community.breastcancer.org/forum/68/topic/...
With all invasive cancers, there is always some concern of distant and undetected spread, which could form a metastasis if the cells manage to survive and replicate in another part of the body. If breast cancer cells do manage to escape their location in the breast via the blood stream or lymph, they tend to establish themselves in particular locations such as the bones, lung, liver or brain (that is their usual habit).
HER2 positivity is a risk factor that increases the risk of distant spread by some amount. Larger tumors also have an increased risk of distant spread.
Tumor markers tests are imperfect and lack the sensitivity to detect a few rogue cells that may become problematic in a few years.
Surgery is a local treatment. The main purpose of giving trastuzumab (anti-HER2 antibody) plus chemo is that these are systemic treatments that can reach cancer cells wherever they may be, especially any that might have escaped the breast.
There is a lot of support here if you do decide on such treatment.
BarredOwl
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Chocomousse, I'm not sure what you mean by HER2+ being a breast cancer specific mutation. Any cancer can metastasize to other parts of the body. Being HER2+ won't prevent that. In fact, HER2+ is a very aggressive form of breast cancer. The good news is that with Herceptin, HER2+ diagnosis is no longer a death sentence. Your oncologist will be able to provide you with more info regarding further treatment. I was thankful Herceptin had been approved for early stage bc a year or two before I was diagnosed. I had a little baby I wanted to see grow up. I treated it as aggressively as possible, and so far so good, 8 years later. Best wishes to you!
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choco,
I had nearly the same diagnosis as you had, and I had a mastectomy at UCSF, where I was told by my MOs that even though it was very small 7mm and node negative they didn't want to treat me too much or too little ( seeing that it was HER2+.. ( nothing to fool around with) I sent my pathology to my MOs at Cedars Sinai in Los Angeles (where I had been treated 25 yrs ago for bc back in 1990 when I was in my 30s) I wanted a second opinion. They advised no chemo or herceptin... Just arimidex... UCSF however recommended Taxol for 12 wks and herceptin for the rest of the year. I already wanted another mastectomy. After reading studies I decided to go with the UCSF treatment plan. I'm glad I did. I finished chemo in mid April and they suggested cold capping so I kept my shoulder length hair despite chemo. Chemo is never a picnic , but I've done this before so I figured why not do everything suggested just so I would have no regrets. Talk to your doctors and there are many of us here who've been through this , there's lots of support available from everyone here. Take care.
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Barredowl is absolutely correct. When your tumor is less than 7mm, this poses quite the conundrum, as it truly is optional and a very personal decision.
I had a lot of high grade DCIS with comedonecrosis one focus of microinvasion. I had 1.5mm of IDC. So my tumor was very very small. However, for me personally, when I put the whole package together, including my age and the age of my children, I went for chemo (I finished today with Taxane therapy!). Some women choose Herceptin only. I felt it was the best choice for me. If I had been Her2-, I would not have done it.
Please do check out the thread that Barred recommended - those of us with little tumors hang out there :-)
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Thank you all so much, I understand much better now. I'll check out your post and the link, Barred.
Hi Carolina59, I didn't think that HER2 could prevent mets, I just thought it was exclusive to breast tissue as HER2 proteins are receptors on breast cells exclusively.
"HER2 (human epidermal growth factor receptor 2) is one such gene that can play a role in the development of breast cancer. Your pathology report should include information about HER2 status, which tells you whether or not HER2 is playing a role in the cancer.
The HER2 gene makes HER2 proteins. HER2 proteins are receptors on breast cells. Normally, HER2 receptors help control how a healthy breast cell grows, divides, and repairs itself. But in about 25% of breast cancers, the HER2 gene doesn't work correctly and makes too many copies of itself (known as HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression). '
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chocomousse I think other explained it well. I did have the bilateral and no nodes but my tumor was 5.5cm (invasive part with 1cm DCIS) Hormone positive. My oncologist considers me high risk for recurrence. But so far 5 years NED!
Having a tumor under .5cm, no nodes is low risk for you.
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Choccomouse,
Cancer that spreads outside the breast is still breast cancer. I think this is the source of your confusion. Cancer that spreads to the liver is not liver cancer. It is metastatic breast cancer with all the characteristics of the original tumor. Thus the aggressive treatment
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Choccomouse you might be eligible for the ATEMPT trial. I am in it and was randomized to the Kaydila arm. Chemo is easier. You do not lose your hair. If you are interested go to the ATEMPT roll call thread.
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Wabals, that explanation makes sense. Weird that breast cells can cause cancer outside of the breast.
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hello lovely ladies, it's been a while.. I was curious if someone could indulge my curiosity. My period stopped quickly when I started chemo & came back a few months ago. It's been exceptionally heavy which I assume is due to tamoxifen and my body going through so much .. My question is did you ladies experience like a weird span of cycles? I had what I thought was a period 10 days ago & it was for 7 days but would go away at night (it's weird for me) and then it came back now but extra heavy like it's been.
Did anyone experience this? I just worry because tamoxifen & endometrial cancer - but I wasn't spotting it was a period that went away at night and came during the day .. Should I be worried?
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running cello,
My periods stopped with chemo as well and resumes about 5 months after the "big" chemo stopped(October). At first my periods were very heavy until about 3 or 4 months months ago, they were very light and became a little irregular(which they have never been). I went 6 weeks before starting my period where before I was always right on every 4 weeks. I just had a hysterectomy so won't have to worry about that anymore but think the Tamoxifen did play a role in that. I have heard some women don't have periods at all with the Tamoxifen. Hope this helps!
Take care,
Kathy
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runningcello,
My periods stopped with chemo and I entered "chemopause." This was in 2011 when I was 42, so a little early for regular menopause. I have not had a regular period since but have had some spotting now and again. I sometimes wonder if my body is trying to start my periods back up again! FYI, I was on tamoxifen until my oncologist switched me to fareston.
When the spotting began, I was scared and spoke to my oncologist. He sent me to a gynecologist who did a biopsy of my uterus (ouch!). Thankfully it came back negative, so now we're just keeping an eye on things.
I encourage you to speak to your oncologist about your periods as s/he should be aware of everything that is happening to you. I also suggest you speak to your gynecologist. Our bodies have been through so much - it's impossible to know what is happening until we get some answers.
Please let us know how you are doing!! All of this is scary stuff (and I'm sick of it!). Hang in there and take care.
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thanks for the words of kindness
my period has been pretty regular except with this last month it coming twice. I mentioned it to my oncologist and she said its your period just going back to normal.. I need to pick an OBGYN, no sexual activity until I began tamoxifen but I'm just nervous with the transvaginal ultrasound and pelvic exam I just envision them hurting. I know many see an OBGYN before intercourse but in my culture that's not common and it's done post intercourse.
When you say spotting is it quite literally just blood out of nowhere and it's for that one moment or is it like an irregular period for to
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chocomousse- Her2+ overexpression is not exclusively a breast disease - you can also have Her2+ gastroesophgeal/gastric cancers, and some other types - and Herceptin is also used for them. Her2 is in other locations in the body, I believe cardiac particularly - which is one of the reasons a side effect of treatment is congestive heart failure and the reason we are so closely monitored with echocardiograms or MUGA scans.Her2 is in lots of places, it is the overexpression in the breast that is the issue.
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Ok any ladies out there I need your help !! I went to the web site for cancer math and it asked for tumor size ..
Can some one tell me how to put that in there my pathology report states this. 2.5 x 1.8 x 1.5 cm I can't put it in there that way and I'm not good with math. does anyone know how I would put that in there? thank you.
Also how accurate is this site ?
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ang - just use the largest single measurement
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ang7894 I think the site is pretty accurate but not so if you have a tumor over 5cm or a lot of node involvement because they haven't studied that in this too.
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runningcello,
It is good to hear that your oncologist says it is just your period returning to normal - hurray for normal!!
It is good to have an OB/GYN - perhaps your oncologist could recommend a female one to you? I feel more comfortable with female GYNs and it would be nice to have one that works well with your oncologist.
I find the transvaginal ultrasound and pelvic exams uncomfortable and a little awkward, but doable. Definitely not painful (and if anything hurts, let them know! They don't want to cause pain). They use warm lubricants and that helps tremendously.
In regards to the spotting, it is just a little bit of light blood when I wipe after peeing. Nothing in my panties. It comes and goes and I'm wondering if it is my period trying to return. I'm going to start tracking it to see if there is a pattern. Right now it just seems random to me.
Hope this helps!
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Thanks SpecialK. That makes sense. So those meds attack HER2 wherever it is even when it's not overexpressed.
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Chocomousee I can relates to what your questions and thoughts are. My scheduled plan of treatment was lumpectomy and radiation. My tumor was under 1 cm no node involvement clear margins invasive Ductal carcinoma ER PR positive THEN after lumpectomy and cleared to start radiation I went to see radiologist found out I was HER2 positive and BAM! Everything changed! Was sent to MO and chemo was added. I was devastated and shocked. I was told due to HER2 that chemo was necessary because IF there was a stray cancer floating around and HER2 attached it would cause rapid spreading. It is still hard for me to do the chemo cause part of my head keeps saying IF there are no cells floating anywhere you are going through this for nothing and Herceptin kills HER2 not chemo BUT the other part of my head says suck it up girl and do not take the chance!! I will do treatment 4 next week and am scheduled for 6. I do want to ask is there a huge statistical difference in effectiveness of 4 vs 6 treatments n my case. I will do herceptin for a full year and maybe longer and wil be doing tamaoxin after chemo. I will be asking MO about the number of treatments. Your MO can guide you but ask your questions til you feel comfortable with your treatment plan.
Suladog was mastectomy personal choice or recommended? I had lumpectomy before HER2 diagnosis and am trying to decide if I want to do mastectomy after treatment. MO and surgeon saying in my case it doesn't matter.
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gretagirl, I also had my lumpectomy before my diagnosis and have wondered about mastectomy vs an additional lumpectomy (margin not perfectly clear). My surgeon is saying lumpectomy with rad is just as good. I would be interested in hearing others thoughts.
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Hi all-
I'm 3 years out from Dx. I was wondering what kind of followup appointments people do at this point. I would like as few appointments as possible first because I'm 2 hours away and second because I want to forget about bc dx as much as possible. Third, I love my MO but don't care as much about my BS or RO.
I was on a study for perjeta (affinity) which has a pretty heavy followup protocol. For 3 years out I meet with MO and Echo every 6 months, in addition to mammo/MRI which I think is just once a year. In addition, my breast surgeon also wants to have an appointment with me. And i'm sure the RO does too. But since my MO will do a physical exam when I see her, I don't see any benefit of seeing the BS and the RO in addition to the MO.
I'd love to know what others do at different points post-treatment.
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Hi All!
We would really like to put together a slide show showing all your faces to show the amazing diversity of our community, reaching around the world. Please share with us here https://community.breastcancer.org/forum/135/topic..., or PM us. We may also present this at our annual fundraiser in October.
Photo (best quality possible)
Where you live
Diagnosis
Your Age
Quote about how the community/BCO has helped you.
Thanks Everybody!
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Today I acknowledge 5 years since diagnosis. I first wanted to type "celebrate" but somehow that doesn't seem right. My MO still considers me high risk and continues to want to see me every 6 months. I still have a mammo each 6 months followed 6 months later by an MRI, still on Anastrazole and have been in 2 trials for its use. Anastrazole is now 4 years for me, side effects have waned but I know I have another 6 years on it to make 10. My diastolic BP has never gone back up to over 60 but with rare exception. I stopped seeing the RO about a year ago. Lymphedema still persists and I wear a sleeve from time to time when it's bad. I'm supposed to be wearing it daily but it's just too hot. Altogether, I think I've come through this pretty good but lymphedema never lets you forget. Well, that and wearing a prosthesis.
I don't come on this website much but just wanted everyone to know I think of them and for those of you just starting out, there is hope. I haven't stuck with any particular way of diet change other than never eating sushi or sprouts, need to lose weight and get more exercise but that's been a lifelong problem. Next I'm looking forward to the 5 year mark when I will have gone through surgery (I had neoadjuvent with lots of problems so everything was delayed a couple of months more for me to get through the surgery) and that should be the beginning of May 2016.
We all have something to remember our BC by, some different side effects for each of us, some worse than others, and this site is great for helping us cope with the day to day questions we have and just to know there are others out there who share our experience. Thank you all!
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I'm in the chair now getting my last Herceptin treatment. I'm so excited to be done! My MO still wants to see me in three weeks to make sure I feel good and my labs are good after my surgery. I'm scheduled on the 25th for my ooph/saling. I also saw my cardiologist this morning. He said my last echo looked really good. Still wants me on heart medication to protect my heart. Not excited to still be taking more drugs but definitely don't want heart issues either.
MX = LX + rads. The stats are almost identical. You need to do whatever makes it easier to sleep at night.
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Congrats Fitz!! I truly appreciate those that come back or stay on to help those of us that are newer. It's encouraging to see women that are five plus years out. Makes me feel like I could make it too
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mommato what type of drugs are you taking for your heart
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Thank you Specalk and Lago for your info .
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