TRIPLE POSITIVE GROUP
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Yoshi my family almost moved to New Zealand back in 1972. Nixon got elected for a 2nd term (by I belive the biggest landslide) and my dad was so disgusted. Had a job lined up and everything but my mom didn't want to give up her American Citizenship. I think that
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Well said Jerseygirl927. I feel like crap this time. Constipated or diarrhea who knows and mouth icky and this nausea will not let up! One week tomorrow since third treatment and I just feel Yuck!. But also know this is minor stuff and it could be worse! So...... Plan on talking to MO I still have some questions that are hanging in my mind about treatment and I just can't get to a comfortable spot with it. Hope y'all have a great evening
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hang in there. It does get better.
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hi I was on here back in 2013 when I was first diagnosed. Fast forward and my question is how can you tell pain from Al versus a recurrence?,, I'm a triple girl,and am hopping that's in my favor
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Bone pain is different and than stiffness but discuss this with your oncologist. 2 of my friends didn't know they had mets till they broke something.
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I have had ongoing wrist pain. Got an xray and it was fine but I have had 3 broken fingers on that hand
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Just found out that I'm HER2+, score 3+ and ER&PR + and am still reading about what this means. My onc will be going over my chart with the tumor board next week and before the addendum path. report came back, I was given the all clear with no further treatment necessary as my IDC was stage 1A and my nodes and margins were clear. I'm seeing people in this thread who had negative nodes getting hormone and chemo therapy after a Uni or BMX and would like to know why? If the surgery removed the cancer with clear margins then the cancer is gone. Why the need for Herceptin? I can understand for people who had a LX or UMX done as it decreases the chance of recurrence in the same breast and/or remaining breast but why the need if both breasts are removed? Her2+ is a breast cancer mutation so if the breast cancer is gone, why target therapies at it? Does it continue to exist inside the body?
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Her2+ is a more aggressive form. Chemo and herceptin and radiation are given to prevent recurrence, local and distant.
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I'm doing neoadjuvant THP and plan to have BMX surgery sometime this winter. Reconstruction at a later date. I'm wondering with the +++ diagnosis what the likelihood of radiation is. I know it's really a question for my oncologist, but I figured I could ask here and get reliable answers!
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Chocomousse, unfortunately, something many of us learn after we have been diagnosed with bc, is that even node negative early stage tumors can spread via the bloodstream to distant places in your body, usually bones, lungs, liver or brain. Chemo is to kill any stray cells that may have escaped the breast. Your MO can discuss your particular risk with you and let you know the benefit of chemo.
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Thanks guys. But HER2+ is a breast cancer specific mutation so how can it cause cancer in areas outside of the breast?
I also had a CEA and CA 27.29 test and both were in the normal range.
Based on everyone's signatures, it seems that the liklihood of me remaining treatmrnt free is low.
What do the following mean: NED and MO?
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NED is no evidence of disease and MO is medical oncologist. I was told that HER2+ was guaranteed chemo and radiation.
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I got my first cycle of TCHP today. Waiting to see what SE hit me.
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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.0
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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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