TRIPLE POSITIVE GROUP

suburbs,

why no rice and no white bread? thanks!!xoxo

Suburbs, I really hope so, thank you for encouragement. My tumor was missed in January, it might have been removed earlier, when they told me that everything was fine I cancelled another mammogram I was called for telling them that both my mammogram and US were clear. I will also go for this extra 1%, this is why I asked my oncologists whether I can get stronger chemo but they said no. I see you did Taxotere, was is something your doctor recommended? Did you have to choose between Taxol and Taxotere?

When I got this diagnosis I stopped eating like at all, no bread, minimal carbs, no eggs, no diary, no meat, fish sometimes, no sugar. I lost 6 kg in a month. Now I eat because my body needs protein to build new cells but I will definitely revise my diet after treatment. i will meet a dietitian in two weeks, so far my oncologist told me I should eat a little of everything.

Cherry

A year and a half after getting a mammaprint, surgeon handing results to me (not done by MO) and telling me she could not offer any interpretation of it (but she ran the test! ) I still wonder about the results. That was my first doctor in the "journey", who I subsequently left for for another surgeon. That test caused so much anxiety and frustration, as the surgeon wouldn't addresss it, the MOs I consulted with after that would not use it. It listed me as luminal B and HER2- .. confusing ! My HER2 by pathology was very weak positive. I did the chemo and herception, so that is done already, but I will have lingering doubts about what it all means. Frustrating and I have been planning on contacting Agendia when I feel more stable and relaxed post-treatment.

Ladie, I'm not triple positive but I love this thread and I followed you gals for awhile.

Hey Momma, I was diagnosed at 47 (bit older than you ) with a 10 year old and 7 year old. Similar . As a parent to young children, this has been terrorizing to me; I won't lie.

Cherry, I was diagnosed in June 2016 and am still struggling to come to terms with this (see above). So there isn't a set timeline on that. Feels like just a few months ago that I got that call. And now with just one Herceptin treatment left, I'm so scared about being unleashed from care.

hap, may I ask where you have found the 15 percent recurrence versus 25 if you do nothing? That's with stage 1, then? I'm surprised at the 15 figure. Sounds high to me for Stage 1...but nevertheless, I understand your comment that it's a harder call re: treatment. We stage 3'ers really have a no brainer call on that if we buy into conventional medicine. And yes, there are after effects. I am a pretty fit person and I feel 30 years older in my joints. I have the beginnings of lymphadema. It's hard.

I don't think Elaine was suggesting you shouldn't worry about recurrence; I think she's trying to encourage you that your outlook is highly favourable. When I sit here at Stage 3a, I know our recurrence stats are worse than yours and I so wish mine had been caught earlier.

Elaine, in your chemo board, are there quite a few stage 3'ers? I mean, I hope most aren't recurring??

It's all relative, but we all need to remember we all share this disease. Once it's invasive, it's invasive. I am just trying to pull my act together and do all I can. We all share our fears and just may be at different points with respect to acceptance and confidence, etc

well ladies, here are a few stats from this site from the stage 4 board. Out of 187 people that shared their initial diagnosis before progression (and I did not include de novo in this 187):

8 % were DCIS

18 % were stage 1

41 % were stage 2

32 % were stage 3

There are many variables to consider such as subtype, date of initial diagnosis (I.e. Could have been less aggressive or contemporary treatment), the treatments they chose, etc. So there you have your figures right there.

The higher percentage of Stage 2's turning to stage 4 tells me that differentiating between stage 2 and 3 is probably gray in many cases (i.e. Probably many 2's are understaged and 2b is really similar to 3).

I just figured I'd go straight to the sources. Stage 1 ladies, I didn't evaluate closely, but very few if ANY of these were triple positive. Hope this helps

posey - interesting numbers, thank you for sharing. About how many from each stage do you think we're triple positive

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

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!

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

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.

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

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!!

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.

"the "no meat, dairy, soy, alcohol, white bread or rice" rules for survival,"

Whuh? Whose rules are those?