TRIPLE POSITIVE GROUP
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Mommato3, PoseyGirl, you both know exactly where I am, terrorizing is exactly the word. And as I have mentioned before I did not know anyone who had bc. I do know one woman though who had leukemia 15 years ago, she is a friend of a friend whom I recently met again at a party a week before I was diagnosed. She is doing great now, touch wood, she is a bit older, but we all remember her story, I remember I cringed like in pain when my friend was giving me updates on her status. She and her first husband separated and she was living alone with her daughther who was in her early teens, she met a new man who also was separated with a child. That is when I met them both for the first time. Both tall and goodlooking, I thought how great that things worke out for her. They moved together and decided to have a baby, two months into pregnancy she got diagnosed, the doctors waited until the seventh month, did the cezarian and she started the treatment. She is now over 50 I believe, she looks good, she is doing good, touch wood, she has not lost her spirit, she is a very easy and down to earth person and I like her a lot. Their girl is 14 and she has recently become a grandmom for the second time, her eldest girl is around 30. I was so happy for her, she show me pictures, and when I said that I want to lose more weight and have to change my approach to training etc and she said I remember: well, you should go easy on yourself, this is not so important. I could probably talk to her now, but we are not so close and never talked about her cancer before, and I did not tell this friend of mine either, have been so far successfully avoiding everybody. What I am trying to say is that mothers who go through cancer with younger children was something I knew about even before, it was terrifying me when I knew other people were enduring it and now I am here myself. Finding this board and talking to you is the only therapy I get and that is working for me right now. In between I am just breaking down over this and then moping myself up trying to force myself live in every moment because I do not know how many I will have and here we go again, pity party and moping. I have though show this chatt and some of your profiles to my youngest and told her: this lady has two children and is about my age, and this one has a girl that is the same age. She was like: so there are moms as old as you are who have bc? And I was like: yes, it is awfully sad but there are and we all want to be there for our kids so let us hope for the better.
About staging, I know I am paranoid but it is as you say, there is a lot of gray area there, and we all know that invasive means it could spread with blood. Not because it wants because the cells break free and travel with blood and there is no way to track it. Higher Ki, more cells, higher prolifiration higher chance they can break free and manage on their own. But what about those DCIS, they do not even stage it, how do they recur If it is not considered invasive stage? Because my DCIS was 5 cm and near pectoral muscle. I am a worry incorporated, and I am not easy on my eldest either because we are not native Swedes and I have no family here, my husband has a mother who he does not speak to and a sister who is not exactly a parent material in my eyes. When I fall into the rabbit hole I cry on my eldest's shoulder telling her that she has to be there for her sister. What have I done in my life to deserve it. I train my brain notto lose it in the morning when I am waking up realizing this is my reality. Thank you all for your kind words, I hope I will be able to help someone in the future they way you help me, hugs Cherry
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Hi Paulette,
You are welcome, you will teach us all how to cook the red dates chicken soup, I love to cook, this part of me that reminds me of normal life when I rather stayed in the kitchen Friday night and cooked something for my family having deep conversations with my eldest over a glass of wine. She does not drink though, very seldom, it was all me,Cherry
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Hapb,
Re: eating steak and drinking wine. My MO is a firm believer that cancer does not come from food. There are tons of studies that try to prove different but I have yet to see one that actually proves it. She hasn't seen one either that can prove it. But to each her own.
I have decided to eliminate negative people more so then food right now.
People have been eating meat for 100's of years.
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Let me start by acknowledging that I am very early in my BC journey and I am not a parent, but I believe that there is no "right" way to have cancer just as there is no "right" way to be a parent. We are products of our temperaments, cultures, and experiences, and we each have to do what is right for us in the moment with the information we have at the time.
I've always been more of a fatalist, believing that there is a grand design that we can't see and that some things are fated to be or not to be. On the other hand, I am something of a control freak in the moment and have a strong need to understands all the why's before I make a decision or accept a recommendation. I have found that so far I haven't questioned "why me" as far as getting cancer since there is no history of BC in my family (although my dad did have aggressive prostate cancer 17 years ago & has remained NED since then). Our bodies are such amazing & complex machines that it's actually remarkable how much we do know about how they work (especially at the genetic level) compared to how much we don't.
I can't begin to imagine how those of you with children must feel - that sense of vulnerability in going from the caretaker role into that of the one needing care plus the fear of not being there for the milestones in your child's life! I married late in life (met my husband eight years ago & am 53 now), and I"m still planning to make it to my 50th wedding anniversary! There is only so much we can control in life - basically our behavior and, to an extent, our thoughts - I try to focus on what I can do in the now to set me up for the best outcomes in the future. Does this mean I may be in denial? Possibly, but I'm okay with that if it's what it takes to keep my eyes on the prize.
I have the greatest admiration and unlimited gratitude to all of you here & in other forums for sharing this part of your lives to help each other & yourselves! For those of us who have had no experience with cancer, you are an invaluable resource! Love & light to you all!
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Now that DD is gone to college for the most part (comes home on weekends), DH and I have been able to plan healthier meals with more vegetables. And, now that the twins are back at school, I've got more time to exercise. Will it make a difference? Who knows. I have lost a whopping 3 pounds, so there's that.
No, most of the members of my chemo board were not Stage III; most were Stage II or lower. Like the breast cancer community as a whole, most were ER+/PR+/HER2-. There were a few triple positive gals like me (e.g., kmntwins and Blownaway), and a few triple negatives. It is striking that two of the ER-/PR-/HER2+ gals are now Stage IV and that it happened so quickly after their first diagnosis. This development has made me more appreciative of being ER+/PR+ and being able to do hormonal therapies.
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Hi Fightergirl,
I will go back and review triple positive, but it wasn't a large number that were triple positive recurring from earlier stages. Most of the triple positives on this thread were de novo, meaning stage 4 from the get go.
I seem to recall looking at this some time ago and attempting to do a bit of cursory research about triple positive. There were 36 TP's out of about 300+ that I reviewed (which statistically fits what they estimate in terms of number of triple positives within the bc population. 20 % of bc's are Her2, and half of those are triple positive - so I've read here and there - so that number wasn't truly surprising). And of that 36, 29 were denovo; 7 had moved from earlier stages. That is a figure more interesting...four out of five were diagnosed at stage 4. Is that the same for all the other subtypes? I don't know. Would take me a few hours to determine). I will go back when I have a chance...with 400 responses on that thread, there is an opportunity for some basic research to be done
Re: DCIS, my guess is that they were not actually DCIS; cells had broken away
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Cherry - You're not having a pity party - you're feeling this way because you are a mother with a young child. If anything is normal in this surreal experience it's wanting to spare our children pain.
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Hapb and Lita, I feel the same as both of you. I am more worried about how surgery, chemo and long term hormonal blockers are going to ravage my body and mind than I am of death. I worry about how those side effects will impact my children and husband more than I worry about dying. I don't think I'm going to die, but I didn't think cancer would ever happen to me. Surgery has already impacted my quality of life and I'm pretty certain chemo and hormone blockers will not make me a better person, health-wise.
Part of this is related to seeing my mother in law batttle lymphoma and become so sick and helpless that my husband and his sister both had to take leaves from work and her illness caused so much pain for my husband seeing his mom suffer like that. Granted, she was 78 years old and very frail before undergoing chemo, so I cannot compare myself to her in terms of state of health. But I know how difficult it was for my husband and he was 47 when this all happened. My children are 8 and 11 and so much more sensitive and impressionable. I question whether seeing me go through these changes and being sickly cause irreparable damage to them?
I have a cousin who battled MS for 10 years and then found out she had stage 4 colon cancer at age 40. She passed away in February and between her MS and the cancer, she was bedridden and in so much pain at the end. Her teenage children were so negatively impacted by her illnesses that one of them ended up in a childrens psychiatric hospital. I don't want my illness to affect my children so horribly. My children are used me being active and healthy. I ski, snowboard, hike, swim, surf and go camping with them and I don't want cancer to stop me from doing the things that I love to do with them, but in some ways it already has. This is the first summer that we didn't go camping or to the beach because I had surgery and was saving my pto at work in case FMLA and disability runs out. And then I was recovering from surgery. I have told them that my goal is to get through chemo and then be on the slopes with them by February. I hope I can stick to that goal.
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toughcookie --
The most striking thing you said was, "I didn't think I would get cancer." I don't know about everyone else, but I think most of us didn't think we'd get cancer. Finding out now how common breast cancer is, I wonder why I was so shocked. Why do we never think it will happen to us? I was diagnosed 6/30/17, and it still feels surreal
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I was shocked but not entirely surprised when I got it. I've had this voice inside telling me my right breast was of concern...I was so lumpy/dense and I took the pill. But still, when it came, I still couldn't believe it.
Toughcookie, re: children...I believe that they are very resilient and if we're open with them (to a degree, and based upon their age and level of comprehension and ability to emotionally process) about what's going on, they adapt very easily. Mine are similar to yours in age - turning 8 and 11 this month. They knew what was coming as I told them, and so when I came home with my breast all bandaged up, after a week or so when it was cleaned up I let my daughter come in and see (she wanted to) and she emptied my drain. After that, they didn't seem to care at all. Conversely, I didn't give them the warning that I was going to shave my hair all off one morning (it just hit me that it was time). That bothered them, as they woke up and saw me bald. That was jarring for them; I had forgotten to tell them, and I'm up front about my treatments, etc. My counselor told me that if a child sees you go through tough times, this makes them resilient; it's been proven. You going through this now will not affect them adversely unless there were some factors that could negate that. I believe some of those would entail: a parent hiding information and them knowing something was going on - they are young but they are intelligent; them having to take on too much adult responsibility and worry; them feeling insecure about having care for themselves at any point in time (i.e. safety); them watching us in too much continued pain. If we can try to create a normal but realistic environment and keep their routines quite steady and normal (at this age), they seem to do very well.
I've learned that my children worry, but that they are pretty ok as long as I am 'mostly' ok. Once in awhile, they'd see me really upset or see me not feeling well. But that wasn't constant and they understood what it was from. My counselor assured me that them seeing me in a raw state here and there was NOT bad. So, honesty and moderation - that's my approach. Sorry for the long essay on that! I just think that for kids that are 4 and up, there needs to be a little bit of communication (of course, structured for their age). They are very smart and don't want to be left in the dark. It unsettles them. I can tell you're not doing this at all, tough cookie, but I just think it's good for us to talk about if we have school aged kids...I find it helpful, anyhow! Your kids have a foundation of love and security with you since their birth. They feel safe and secure. I say the cancer word around here; I don't want to pretend it's not cancer - they know. I realize that if I became ill for a long period of time, this changes the situation entirely. And quite honestly, I can't even go there; I find it far too distressing. So I won't. But if that happens one day, I will have to trust that between myself and my very supportive family, measures would be taken to support them as much as possible. For now, my goal is to provide normal, help them mature, make those lunches every day, volunteer at the school here and there, throw birthday parties, yell at them and nag at them, etc. I pray to God I'm allowed to continue doing this for a lot longer with them so they can benefit from a mom being there. I can tell from your post that this is who you are. I can tell they are used to a strong mum. This strong mum means you have strong kids. Which means that when mum is not on the slopes, kids are still strong; she made them that way
Hapb, a woman on my bc FB page posted a very in depth article about our environment and how it's tied to bc. Many areas are covered. Here is the link. It's rather overwhelming and I can list about 10 ways I transgressed. It's complicated and we are very exposed to so many toxins. So I can only do what I can do now and that is to better my diet, turn the exercise dial to 'high', remove toxins from anything that goes on my body or into my clothes or household cleaners. Beyond that, the only thing I could truly do is move far, far away off the grid (and I know a couple people who have done this!):
https://ehjournal.biomedcentral.com/articles/10.1186/s12940-017-0287-4
And here is a book she told us about:
http://projectearthblog.blogspot.ca/2009/05/secret-history-of-war-on-cancer.html
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Kae_md99, on white bread and rice, well, that's just something I hear all the time even outside of the BC community. Yes brown rice, no white rice. Yes whole grain bread, no white bread.
And while I try to buy organic when possible, I am so far just eating more vegetables. I have not adopted the highly restrictive dietary guidelines. I am trying. I fall more in the shelabela camp, a carnivore. And it would be nice to have some clinical trials that demonstrate the effectiveness of a vegan diet and no alcohol on preventing a recurrence.
Cherry-sw, I was not provided any options other than TCHP. I never questioned the selected treatment as I was grade 3, though I was constantly freaking out fearing it was not working. Chemo first is another sub group of the "triple positive we are special" club.0 -
I'm like you, Suburbs...I'm trying to change my diet, but haven't eliminated meat other than to cut down red meat, have smaller portions, reducing grilled stuff. But I think I'm moving towards eating mostly chicken and fish. I was discussing with my sister what meats in Canada have hormones in them. She thought that hormones added were not legal here in Canada, and then read possibly in beef. Until I know more about that, I'm buying only locally grown, grass fed meat with zero antibiotics (and hormone free of course).
I don't have a lot of dairy in my diet, but a wee bit. I am trying to drink green tea and eat nuts and berries and other good stuff. The main challenge for me is decreasing sugar. I was never a person who ate a ton of processed foods or cured meats.
It's hard to know where that line is!!
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toughcookie_21, I am so sorry for your cousin's children. One can only imagine what they are going through. I understand what you mean when you say you do not want anyone around to be impacted by the serious illness. We want to protect those we love from suffering, doesn't matter If the children are young or grown up. It is just with small kids we worry that they cannot handle the tragedy, with those grown up that we can be a burden. As far as death is concerned it is still remote at this stage, I believe it is different when it gets close because we do not know anything else but to live It all just awful to be in this position. My mom is staying with us right now and I am crying in front of her so often I do not know how she is holding up, it must be awful for her, I have to pull myself together, Cherry
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Posey, that's exactly the approach I'm taking with my children. They do seem so resilient. There were a few questions right when we finally told them it was cancer before my surgery. Most of their questions were about the chemo and less about the surgery as I've had knee surgery and DH has had his gallbladder removed. They knew we both recovered quickly from those surgeries so I think it was less scary than chemo for all of us. I think they were too young to remember my mother in law's cancer and we aren't that close with my cousin who had ms and colon cancer. It's the unknown that's so hard.
As for eating, I have always tried to eat organic, especially the "dirty dozen" fruits and vegetables. I've bought only organic free range eggs for a long time because I think they taste better. I practice intermittent fasting. I do eat red meat, but I'm trying to go organic and pasture raised for that now, but it's so expensive! I tried buying organic milk but we go through so much milk and it's super expensive too. I love coffee and have found a reasonably priced organic Colombian brand that I now buy. And red wine, what can I say about that? I love my red wine. I rarely open a bottle anymore because I can never finish it before it goes bad, but they'll have to pry my red wine and coffee out of my cold dead hands. Just kidding, if I felt there was compelling enough evidence that my Friday glass of red wine was contributing to my cancer, I migt consider giving it up. But not coffee.
On a funny note, I jokingly asked my oncologist if the chemo chemicals were organic and vegan. We were talking about my diet and how he would like me to eat during chemo. He didn't get it.
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I know there have been many studies on the alcohol-breast cancer link. I've read the studies as well as the studies on phytoestrogens, hormonal risk factors and even how genetic risk factors can exacerbate some of the other chemicals we put in and on our bodies. I drink one glass of wine sometimes on a Friday or Saturday after a long week, two if I'm feeling particularly ambitious, which is why I don't even bother opening a bottle anymore because it goes bad before I even get to the second glass. It does make me so angry to see friends who live super unhealthy lives, drinking and smoking, eating all kinds of processed food and not working out who don't have cancer.
I didn't meet a single risk factor on the bc assessment. I got my first period very late at age 15, never took hormonal birth control, first pregnancy at age 28 - miscarried, but both of my subsequent pregnancies were normal and prior to age 35, I nursed both children for over a year each, I've never been obese, though after having children, I felt my weight got out of hand and I'd gained 25 pounds. So I adjusted my diet and increased exercise and lost 20 pounds and have kept it off.
Until I got the genetic testing done, I was what the oncologist referrred to as "unlucky." I was adopted at birth, so the only wild card was the positive results of the BRCA2 gene mutation. If I had known about that, would I have lived my life any differently? I can't say for sure. I could have drank less in college and I probably shouldn't have tried cigarettes when I was a teenager, but I thought I was invincible in my teens and early 20s. I don't think I would have lived my life much differently with one exception- stress and how I deal with it.
I find it so ironic- My oncologist office gave me a suggested diet plan for chemo that consisted largely of processed, carby, "fake foods." It included things like Mac and cheese, mashed potatoes, canned soups, breads and pasta. It was what led to my comment to the onc about organic, vegan chemo cocktails. Again, he didn't get it, but I'm not going to start eating poorly just because the cancer center guidelines say that I should be eating processed food.
Edited to add- someone on another board suggested this Magic Mineral Broth by Rebecca Katz. I made it yesterday and I love it! I start chemo in Friday and I plan on having this on hand to deal with a queasy stomach and refueling after chemo. I don't know who recommended it, but it's awesome and thank you for suggesting it!
Here is the link for the broth: https://www.rebeccakatz.com/magic-mineral-broth/
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"the "no meat, dairy, soy, alcohol, white bread or rice" rules for survival,"
Whuh? Whose rules are those?
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Well, I'm sorry to say that I failed re: a few bc risk factors...had my kids late and the pursuant miscarriages, I drank more often after I finished with breastfeeding around 43 (I nursed for five years! But then I kind of felt liberated and definitely drank a glass of wine a day). I took the pill when younger and also again for two years to regulate my periods in perimenopause. That was not the combination pill which apparently is worse; it was a low dose estrogen pill. I don't believe the pill started the cancer or that the drinking started it, but I believe that them added into the mix definitely increased the hospitable environment for bc to grow. So I believe in my case it was the perfect storm of factors including my unique physiology that made this happen. I feel so regretful of the pill and so regretful of my four years of imbibing before diagnosis. I wish I could let it go and turn back time on taking the pill, getting pregnant a few times after my second child, the drinks...I'm still beating up on myself a year later. Not as often, but I do it.
So toughcookie, you are brca1 or 2? I've not been tested but thought it was rare for Her2 positives to have the brca gene mutation. Now worried I should pay to get it checked. They won't cover it in Canada unless you have family history...
Hapb, I do realize every parenting scenario is different and we just try to find what works in our own situation. It sounds like you are being a rock solid mum in spite of various challenges...
I don't know what diet choices will be best, but I will be adopting several changes. Tough cookie, how do you fast? I have been thinking one day per two weeks, but what do you do
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toughcookie_21, it was one of the ladies on Starting chemo in August thread. We started to discuss chicken soups and how good it must be for the body while going through chemo, and for a while the thread turned into a culinary forum all circling around what we can get out of a chicken. My husband just got me red dates and wolfberries from a Chinese store, I am determined to cook a Chinese chicken soup, the recipe introduced by PauletteK. Cherry
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poseygirl, don't beat yourself up about the past! Especially about things that really aren't in your control ad even the ones that are, you can second guess yourself all the time, but do we really know what caused our cancer? Not really. That's what I meant about if I'd known about the brca2 gene mutation, would I have lived my life differently? Probably not, I'm pretty happy with the things turned out for me (except cancer!) All of my mistakes and missteps have made me who I am today and I wouldn't be this version of myself if I hadnt learned from them. Ive thought about a lot of things that may have caused my cancer. I ate too many sweets for years and ate late at night and didn't think much of it until my weight started creeping up as I got closer to 40.
I don't know if my diet or lifestyle choices are the best, but I do know that I feel better when I don't eat refined sugar, flour and highly processed foods. That doesn't mean I don't EVER have sugar. There's a peanut butter pie sitting in my fridge that I've decided is going to be my treat this weekend before I start my fast for my first chemo on Friday. I have fast for 12-16 hours most days for approximately the past year and have done a few 24-36 hour fasts. I was planning to fast before and after chemo, but the oncology nurse nearly lost her head when I mentioned it. They scared the crap out of me and made me second guess that decision, so now I'm going to do a modified fast based on the fast mimicking diet. There have been many compelling studies done showing that a daily 13 hour fast is highly beneficial for reducing breast cancer reoccurrences. There are also several studies on intermittent extended fasts and how they protect the good cells or put them into a resting state so that chemo can attack the cancer more efficiently as fasting hasn't been shown to alter the growth phases of cancer cells. Dr. Valter Longo is doing a ton of research into this, but there's not a lot of money funding his type of research like there is in pharma.
Edited to add- I'm mostly wanting to fast to possibly reduce the side effects of chemo. I'm so terrified of what chemo is going to do to me and if fasting helps protect the good cells, well then I can assume that the side effects won't be as bad. There is some science and limited research on this. It seems that the medical community is not very concerned with reducing side effects. They just want to kill the cancer. Just my honest opinion based on what I've experienced hthus far.
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I forgot to add- I had also thought that BRCA1 & BRCA2 gene mutations were rare in Her2 positive overexpressed cancers. I did a ton of research into it and actually found some studies that scared me more than helped me; one had concluded that tumors that were slightly Her2 positive were much more resistant to hercpetin; that same study had some loose correlation between brca2 gene mutations as well, which was why it came up in my searches for her2/brca2 studies.
That, along with a lack of confidence in the oncologist who was recommended to me by my surgical onc led me to seek a second opinion at Penn. I ended up meeting with a team of researchers and oncologists at Penn and one of the first things they said to me was that they're researching a connection between Brca2 gene mutations and her2 positive cancers. They said they're trying to prove that its fairly commmon, but because not all patients choose to get genetic testing done, it's difficult to draw any conclusions. They asked if they could use my stats for their research.0 -
Little far down the thread at this point, but thank you Posey for the info!
FWIW, I am almost two years out from diagnosis, and rarely post anymore here. I check in now and again, but other than the post-chemo afro I'm sporting these days, it's business as usual. My dad passed away the day before my last Herceptin this winter, and one of my best friends suddenly passed away this summer due to an accident, as a result I feel like I haven't had the chance to recover emotionally from cancer quite yet. But then again, as far as cancer thoughts, fear of recurrence, I just don't think of them that often. I keep busy between work, kids, my family, each day is very full. I take more time for yoga and pilates to keep me sane, I no longer feel guilty for taking the time. Don't get me wrong, there are moments when I wonder when the other shoe MIGHT drop. But I feel more at peace, I don't obsess.
So for those on this board who have recently diagnosed, are scared, are reading too much in the middle of the night... it will pass. Feel what you need to fee. But focus on self care, more than anything. As Posey mentioned earlier, kids are super resilient (and in fact, I thank God every day that it was me, and not them, who had to go through this.) Get second, third opinions if you need to - any excellent doctor will encourage that. That was the BEST thing I did.
So if you just started chemo, or were just diagnosed, HANG IN THERE. It takes at LEAST 18 months to get back to your life. If you have kids, think about it as being pregnant all over again and then having a newborn. Your body is not yours during this time, nor are your emotions. This is another life stage (albeit an unlucky one) but you'll get through stronger than ever.
Lots of love.
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Thanks for all the wonderful input, ladies.
Toughcookie, going to check out the fasting. I've read about the 13 hours every day and can do that; it's just a habit I need to commit to. Not that hard to do, really...
Re: BRCA...I really do care about knowing, as I have a young daughter. It ticks me off that they will cover it if you have a family history, but what if I AM the family history? I'm going to push for it and am happy to pay for it. WHen you say there has been a correlation between slightly Her2 positive and Herceptin resistance, do you mean Her2+ at all or lower level Her2+? When I asked my onc's nurse if Her2 can be different levels of intensity, she replied, "no, Her2 is Her2". I had Her2+++ on my biopsy report.
Hapb, thanks so much for the link; I will check it out. My sister gave me one of the forerunning books on foods for fighting cancer, so I'll review your link and hers and like you said - I think it's just important to have a general working knowledge of the good stuff and the not so good stuff. I don't feel it is too hard to make some of these changes - it's all about habit forming. I can pour a glass of lemon water in the morning. I don't need white bread, white rice, pasta, etc. I rarely eat those anyhow. I can lessen my meat intake and when I do eat it, I can make sure I'm eating the best. I thought beans were kind of a no for us? I'll look that up. And what is the verdict on flax? I hear both sides...but I digress.
Fightergirl, you're so right about being up late at night reading. I got into that mode yesterday and then was writing and then couldn't fall asleep till almost 3. I'm 15 months from diagnosis. I was pretty good for a few months early into the year, but then started going a bit downhill again a few months ago. I too do pilates and will be weightlifting with my husband soon. My dragon boat season soon comes to an end.
I'm so, so sorry about all your losses. You have had an incredibly brutal time. I can see why your 'handle' is Fightergirl.
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Fightergirl,
Good to hear from you, though sorry about your Dad and friend. I am also very busy with work and the kids, so I don't think much about recurrence either. Most of the time, I'm just worried about making it through my day. Hope Femara is working out for you!
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ToughCookie, very interesting about Penn wanting to use your stats! Hopefully they can discover something valuable!
FighterGirl, thanks for your words of encouragement, and I'm so sorry for your recent losses!
PoseyGirl, in regards to "levels of intensity of HER2" as described by your nurse, while it seems to be generally reported as a simple yes or no, based on my discussion with my MO, there's more to it.
After reading your post, I researched and found the instructions for the Dual ISH test (which is the one I had) to actually see how the labs score the test. http://www.uclad.com/newsletters/HER2_DDISH_Interp... (Can you tell I'm a data analyst?) It appears that they "Determine the sum of HER2 and Chr17 copy numbers and calculate the resulting ratio" after staining & counting 20-40 cells on a slide.
Basically, the question is how many more copies of the HER2 per cell are there than the Chr17. Per my MO, a ratio of 1-2 indicates a negative HER2 expression (sometimes shown as HER2 +1), 2-4 is borderline positive (HER2 +2 or ++), and anything over 4 is strong positive (HER2 +# or +++). Mine have more than 6 copies of HER2 per Chr17 on average so, yeah, I'm HER2 positive.
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Fleur - this is the information on my surgical pathology report regarding Her2 positivity:
Per 2013 ASCO/CAP guidelines for dual color probes, a FISH result is considered
positive if:1)The HER2/CEP17 ratio is > or = 2.0
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2) The average HER2 copy number is > or = 6.0 signals per cell.
(My IHC was 2+ which was considered equivocal while my FISH results were positive with 2.0 for the ratio derived from 2.7 Cep17 signals and 5.5 Her2 signals.)
It doesn't seem to jive with what your MO is saying. Did s/he give you any documentation on this? (I like yours better, btw!)
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Lita, my final path report from the lumpectomy shows for my DISH results, HER2/Neu oncogene - Amplified, HER2/CHR17 - 4.3, and Average HER2 Copy Number - 6.8 signals/cell. My MO provided the information verbally on the ranged for how the signals/cell relate to negative, equivocal, and positive, and I now see that same information on my original biopsy report:
Result reference range for ACSO/CAP Guidelines (2013):
Negative / Non-amplified: HER2/CHR 17 <2.0 with an average HER2 copy number <=4.0 signals per cell.
Positive / Amplified: HER2/CHR 17 >= 2.0 OR an average HER2 copy number >=6.0 signals per cell.
Equivocal: HER2/CHR 17 <2.0 with an average HER2 copy number >=4.0 and <=6.0 signals per cell.
My MO equated Equivocal with Borderline positive.
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Tough Cookie,
I always ate a high protein meal the night before chemo. Breakfast the morning of chemo was one egg with a slice of cheese.
I am unsure if I could have fasted! I was starving by the time chemo was over.
To All,
I don't know why cancer came into my life. I will not beat up on myself trying to figure it out. I do know my work / life balance was upside down and I lived 3 very stressful years before diagnosis.
Today, I do exercise more frequently and I am eating better eliminating high carbs foods. I awake grateful to be alive. I focus on being positive. I have moved away from superficial relationships and limit my friends / family to those people who really care.
This just how I deal / live as a breast cancer woman. I think that is all any of us can do ... just do our best following whatever lifestyle works for us be that no red meat or lots of red meat, no wine or only red wine, peanut butter cake or no sugars.
Thanks again, ladies, for all the information and sharing. You all give me ideas to consider.
Vicky
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FighterGirl, sorry for your losses and please stop by on this thread once in a while to encourage us who just have started, this is one of the reasons I am here, for support and possibility to talk to people who are going through the same thing. When I sit in the oncologist office and they say: it goes well for the majority, and I feel that I do not trust them and they cannot offer me anything that could increase survival for my diagnosis. Here, where I get to met all of you, I know that survival is a real thing.
On children, I was told by my GP, who is a few years older than I, that children process the bad news in portions, that their mind is curious and is excellent to distract itself. I see that my youngest is shielding herself from my illness, she is not thinking of it when she is with friends or doing sports, her mind focuses on new tasks and we keep her busy so she has a lot to do. She is so far taking the situation as is, which is: mom got bc, she will do treatment, she will lose her hair (this hair thing seems to be very important to children because it is a real tangible thing to them I believe, I just hope I will not freak out myself, it is starting to shed this week), then mom will be fine because this is what the doctors said. This is me who is falling into the rabbit hole over and over again and dreads the worst scenario. I have to stop, you inspire me. You all are moms in the same situation and you all deal with that your own way and I have to do the same thing, to find my own way to do it. I realize it will not happen over a night or even a year but somehow I have to get there where I accept what has happened and move on living with that. The truth is I am already living with it and I am miserable all the time instead of enjoying the small moments of happiness. In order not to regret it later I have to fins this new life.
Toughcookie, On Her2 discussion, is there any study that lists the cases when and Herceptin is not working? You have mentioned this study, please post the link to this study regarding Herceptin, thank you in advance.
My last question is on fasting, I also had this discussion about fasting two days prior chemo, about normal cells going into hibernation mode with fewer dividing, meanwhile the cancer cells, that cannot slow down, are dividing and chemo, that only hits dividing cells, will go on those cancer instead of the normal. It totally made sense to me but I doubt there is any extensive research because, as was pointed out, no one benefits on that. when you say 13 hours, the sleeping hours are not counted, right? Does it mean a meal in the morning / AM and one at 10 PM? Or only one larger meal at noon?
Cherry
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Posey - Regarding HER2 level and Herceptin efficacy, a subsequent analysis of the HERA trial data indicated that HER2 ratios less than 5 are linked to a lessened response to Herceptin.
The information is summarized here in an article on Breastcancer.org:
http://www.breastcancer.org/research-news/her2-pos-bc-no-herceptin-response
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Here's something to put a smile on everyone's face.
I got my insurance referral for my 3-D nipple tattooing.
The referral reads "durable medical equipment."
And I thought I was just getting two tattoos!
I also posted this in the forum "you know you might be a cancer patient if." It's a really good forum that usually brings a big smile to my face.
Have a great Labor Day to those of you in the US.
Vicky
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