TRIPLE POSITIVE GROUP

PoseyGirl

I'm Canadian, and here at our cancer centre, we don't get scans unless there are symptoms. No tumour marker tests. When I asked her about this (my MO), she said this is "standard of care". According to that standard of care, my next breast U/S is in May, one year from the last. I am seeing her next week and will tell her that I want two per year.

Like you said, SpecialK, I find it ridiculous that they say there is no difference. I have read that absolutely there is a difference, especially in the bones which can break! It makes zero sense to me.

DizzyGirl, like you (and we have a similar diagnosis), I had complete response. I'm very interested in knowing what other oncologists say about this. I've heard a couple others state that recurrence is low (like 10 percent chance), but that's not what studies say. So I find it curious that practicing oncologists and surgeons are saying this, when journals are not saying this. I prefer what your oncologist said, of course! So if you have more to share on that, I'd be interested. And like you and all others, I don't know know how to move forward in this fear. Some days I distract myself (I have kids also, Elaine) through family and volunteer work. There inevitably comes that dark and silent part inside that faces this as I can only keep it at bay for so long;I shake in fear. But I take hope from other veterans on this site who say that the fear does start to recede somewhat

deni1661

Hapb - so sorry to hear you're in so much pain from the AI. I hope your MO has a better option for you. You are a fighter with everything you have been through and will get through this too!

Tres, I hope the counseling helps. A difficult side effect for sure that causes added stress. So sorry you're going through this.

Julie24, sending prayers for a quick recovery from your knee surgery.

Elaine, I feel like you most days i.e. it is what it is and keeping busy distracts me from worry. But then I'll have a stretch where I lose my energy, positivity and am just plain grumpy. AI side effects or worry about recurrence, who knows? I am getting frustrated with the roller coaster of emotions so I think it's time to get professional help. I hate to be a whiner, thanks for listening

PoseyGirl

I hear you, Hapb. I had this tshirt company pop up on my Facebook page promoting these images with phraseology and Disney branding - for breast cancer. People were writing saying "how about this other cancer?" And they'd immediately reply "we'll make it for you". They were completely using the Disney brand to exploit the whole breast cancer thing and every other cancer to turn a buck (yes, using Mickey). I wanted to vomit. I reported them to the legal team at Disney.

But honestly, I am sick of seeing "Fight like a Girl". I know this heartens some women going through treatment, so I support whatever approach they need. But I just can't stand it. What does that mean, fight like a girl??!! We are fighting because we're human and we have to! I too think all the pink and all the pretty/trendy products, an all these catch phrases are diminishing the realities of going through all this.

Yes, I just went on a rant. Sorry

ElaineTherese

deni,

Have you thought about an anti-depressant? Celexa has done wonders for me.

I think one reason that I don't worry much about recurrence is that I have more immediate fears. My sons (who have autism) are bigger and stronger than me -- and aggressive. They have attacked me while driving, and one severely beat me up when I was recovering from my lumpectomy. He has since been placed on more effective medications, but even today (home for Fall Break), he had at least three melt-downs where he was "punchy" and "bitey." (I keep a baseball bat by my side when I'm alone with them.) I don't want any pity, but I do think that my fears of wrecking with them in the car, punching and scratching me, have numbed me in some ways.

T-Sue

Deni, this is the epitome of emotional roller coaster! I was reluctant to seek out a therapist because I "felt" like I should be able to handle it. You are right HapB, we hold ourselves to a high standard.

If any of us have a sense that we would benefit from professional help and have access to it, go for it! If not now, when? I've been seeing a therapist since midway through my chemo and it has helped me immensely. Your medical team may be able to direct you to a therapist who specializes in women's mental health. Be good to yourselves!

Hugs from Colorado!

ElaineTherese

HapB,

Yes, I have looked into residential placement, but the nearest place had to close two years ago because of state budget cuts. And, that place didn't have a sterling reputation (unaccounted for deaths, etc). I have recently been collecting applications for group homes, which they can move to when they turn eighteen. But, they can stay in public school until they are 21, so we might make the move after they graduate. My husband and I are very blessed to have jobs with flexible schedules, and my daughter is just 45 minutes away at college. There is strength in numbers; usually two of us manage them.

Most of their aggression is a product of puberty. Hopefully, they will be calmer as they get older. 95% of the time I feel safe with them. It's just that awful drive to school in the morning.

KimCee

wow, some of your posts (I am speaking to many of you) are so relatable. Elaine, my heart goes out to you. My youngest of 3 sons is on the spectrum. He lives with me and is 21. He is very sweet but I support him and it is not easy. No help as he supposedly is not disabled, despite many diagnoses and lots of meds. He was bullied throughout school and they would not remove the bully! I had to switch my son out of a school he loved!

As far as living in fear. I promise most of you, it will go away. After about 5 years, I no longer visited the posts. I had developed my friendships and kept in touch with those via text, Facebook, etc. it does get better. Whamo, and here we are. These sites are our lifeline and support.

Many of you may disagree with me but I never give money to breast cancer anymore. I feel like most of the donations go to cups, hats, Mickey paraphernalia, fight like a girl stuff. I do give to the walks. Maybe I am crazy but that is what I think.

As far as emotional help? I so agree with that. Positive attitude is so important. Unfortunately, I am not always there

Suburbs

ElaineTherese and KimCee, the only thing I can say is that you are the living embodiment of grace under pressure, dealing with your home life and still finding the time to share and encourage others here. Thank you

ElaineTherese

KimCee,

Ugh, about the state not recognizing that your son has a disability! It's somewhat easier with my sons, because they have intellectual disabilities. They should be able to qualify for SSI and later Medicaid, once they're 26 and no longer on my husband's insurance. However, we are unlikely to get much help once they age out of school. Our state has a 10+ year waiting list for transition services for young people with disabilities, and with recent state budget cuts, I believe it has gotten even longer. I put the boys on the waiting list when they were 10, but I'm not holding my breath. That's why I'm researching group homes.

Yeah, I don't give money to most breast cancer charities, either. But, I do participate in raffles at my local breast care center because the money goes to women who need help paying for their treatment.

Cherry-sw

ElaineTherese, I red your post, I am truly sorry. This is what you have to deal with, how old are your boys? Do you get any help at home with them, this cannot be easy to be afraid of them. I mean they cannot be hold accountable for what they do either. I can just imagine how hard it must be and while you also are dealing with this diagnosis.

KimCee, it is the same here, if a child gets bullied they do not remove a bully, one has to find a new school instead. Never could understand it.

Cherry

Cherry-sw

KimCee, I know you talk from experience but five years is a long time, sometimes I feel I am never getting my life back, I am still coping with my diagnosis like we all are, and am so paranoid. I cannot look at myself at the mirror, I look dreadful. Women on the chemo thread are posting their pictures in the wigs looking cute, really looking good, and I am just going in a hat, always looking down, a youngest one in the waiting room. This is one of the reasons I hang here for support and reassurance that things will get better.

Cherry

ElaineTherese

Hi Cherry!

My sons just turned 15. My husband is a huge help, and we pay my daughter to help out on the weekends and in the summer. She came home this Wednesday and took the youngest to the movies. Then, she took the oldest for a walk in the mall, which he really enjoys. She earned every penny. I feel so blessed to have such a devoted husband and daughter, but my sons will have to learn to live without us at some point, so we have to work toward their independence.

KimCee

Suburbs, thank you for such a compliment. What part of PA are you in? I lived in NEPA for 10 years.

I understand Cherry. I do not like to see my reflection in the mirror and have not lost my hair yet. I for one look awful in any wig but have to wear one for work. I wing it in hats the rest of the time. 5 years is a long time. But after being diagnosed a second time, it seems as though 18 years flew by. I am not looking forward to doing this alone this time around. Ex husband was extremely supportive and helpful last time. Not having to work last time was priceless

Cherry-sw

ElaineTherese, I have greatest respect for people who face challenges like this, 15 years old they can be hard to tackle, it is great you have your daugher around for help. About them learning to be on their own at some point, well, everybody here occasionally thought of it. When I got diagnosed my greatest fear was and still is to leave small child behind me, the cruelty of this possibility is unbearable and poisons my life. Ok, I am on the low side today again. All strenght to you. Cherry

Cherry-sw

KimCee, I am on sick leave but working 25% from home, brings some normalcy into my life without getting tired or showing up at work. Other than that I go to the treatments, appointments and grocery, some walks in in the forest, but the marital life, I don’t know, I am just waiting for the signs when it will start to ramble, because it takes toll on the family and I believe such thing can either make the bound stronger or make it fall apart. I mean I understand if it wouldn’t work for us, it is hard

Cherry

deni1661

Thank you all so much for the support, I so needed it! My OBGYN had me on Fluoxetine (mild anti-depressant) for mood swings during menopause. It helped greatly so I think it's time for me to get back on something. I agree we should use the resources available- medicine and therapy- to lessen the worry and anxiety.

You all continue to amaze me with your strength and resilience. Elaine you are in a tough position and I admire your commitment to your sons. This demonstrates what a wonderful mother and person you are! Hapb is right, as women we hold ourselves to high standards and feel we have to smile and keep going no matter what. BC is a big deal and it does appear there is a misconception that it is 100% curable. People are ignorant to the fact that there are sub types of BC and we're all at risk of recurrence. It's not their fault; they just don't know any better. This misconception is part of my struggle as most friends and family think "I'm all done" with cancer. They don't understand the daily battle with fatigue, pain, body image, SEs, etc.

I do not support any of the BC or other cancer organizations as I think it's a money making scheme. I prefer to donate my time and money to organizations where I can actually see results.

Cherry and KimCee, I can understand your feelings regarding body image. While my body certainly does not look good these days and the hair I do have is scary at best, I tell myself that this is part of God's plan and my self worth is not dependent on how I look. Don't get me wrong, I still cringe when I look in the mirror but then I get over it and move on. Some days it is easier than others but I'm trying to keep that off my anxiety plate.

SpecialK

Fundraising to further sustain a bureaucracy like Komen, or just plain profiting by selling a pink product in October with a fraction of a penny going to a legit organizations has been going on for decades. Until one is diagnosed it easy to be complacent, or unaware, of the issue. I donate directly to research organizations, and if I am asked in person to donate at the grocery store, or the mall, or wherever, I ask enough questions about where the money goes that they are then sorry they asked. There is enough ignorance and misleading information out there that I feel remiss if I don't educate when the opportunity presents itself.

I suggest that if you are unhappy about what happens during Pinktober that you take a look at this organization.

https://www.bcaction.org/

My first pink October happened just 3 days after I was diagnosed - it felt relentless and cruel - pink was everywhere. I have found that over the years since diagnosis there is less overt pinkness than before, but the underlying issue remains. The public has been fooled into thinking breast cancer is preventable and curable, or manageable, and that by purchasing that pink product they are helping.

Something else that is important - there is a documentary film called Pink Ribbons, Inc that is a good examination of how this came to be.

http://m.imdb.com/title/tt2035599/

Cherry-sw

Well, you know, we can get angry as much as we want, but the fact is most of the people outthere do not know what it really is, I was one of those people who thought it was curable if they caught it before stage 4. I did not know anything about the progression from early stage even after chemo. It was all a huge shock to me. And I still thought that I knew what I in my age needed to know, I did the monthly exams but I knew that statistically it happened to older women and the risk of it happening to me at my age and no family history was insignificant. This is what I have been told by the doctors as well. And here I am, now I had to know everything because it is basically about my life. But the others there without any friends or family who had bc, they don't have any clue, it is not good it is not bad, it is what it is. I agree pink ribbon sucks to us, but these orgs with all the profile products are spreading awareness, this is not for us, this is for those who doesn't know, to tell them about us and make them understand that it can happen to anybody. It is done in the manner of solidarity, bc happens but not to everybody, they do not want scare people. Of course you can always get everybody into a room and start telling dreadful ugly truth to those who will never get bc and in a blink of an eye we all be living in North Korea. We want compassion and awareness from people not get them irritated, the majority will never get it. There are 200 different cancers, do you want to be aware of all of them?

I am sick of this awareness month this year, but a year ago when US election was all over news I saw someone posted on FB: I will just pretend Obama is still the president. This month I decided to ignore it was October, I am not in the city and not at work and do not watch TV, the clinic that treats me is the reknown place where there cannot be any pink ribbons, so no October for me, so far I made half of it through. If I decide to do anthracycline there will be no November or December for me,

Cherry

Cherry-sw

I do not think Swedes donate that much for these types of research, but they do donate a lot for organisations that are operating abroad, Red Cross, Amnesty. For such things as donations for domestical caused we pay taxes, have medical insurrance for everybody and rely upon the knowledge that the government will distribute the funds as they should. Maybe I am wrong but I think it is like that. We have Breast cancer fond in Sweden but I am not sure they are funded by donations but mostly by government Cherry

PauletteK

I’m the lurker here, this October I got so sick of pink also. Perhaps because I’m mad that I have BC, I realized how cruel the pink ribbon used us to make money.

Elain - I read your story, you are amazing mother may God help you to find a better home for your boy.

deni1661

Thanks for the great articles specialk. Before my own diagnosis, I too thought BC was curable, manageable and not "as bad" as other cancers. It is quite frustrating to see the marketing dollars poured into the Komen, Pinktober and other pink nonsense. That money, along with all the money raised should go toward finding better treatment options and/or ensuring all women have financial support for the care they need. People donate thinking they are helping, which is a good thing, but not aware of how the money is actually used.

PoseyGirl

I'm so sorry to read about the challenges you face as a parent, Elaine Therese. It is my impression that in the US, it is extra challenging finding supports for people with disabilities. It's not easy here either, but it is horrifying to think you have to wait 10 years at least. As was said earlier, you are a very admirable lady. Has anyone else in your family had autism prior to your sons? I am curious about heredity.

On the funding piece...I really hope that some of you who don't want to support bc fundraising any longer possibly reconsider. As SpecialK referred to, there are organizations who dedicate all their monies to research. If you google, you will find them. Metavivor is one of these. 100 percent of funds raised go to researching cure for metastatic disease. There are other good organizations. I really agree that the pink thing has had its day, and its time to evolve the conversation. I also agree with Cherry that we can't use scary markeying tactics or people will turn away out of fear. It's a fine line in terms of getting through to people and keeping them listening.

Thanks for your inspiring words, Kimcee; it's very helpful

ElaineTherese

PoseyGirl,

No, autism doesn't run in our families. But, my husband and I both have aunts with schizophrenia, and there is some relationship between the genes that contribute to autism and the genes that contribute to schizophrenia. Also, my husband is nine years older than me, so there's the "old guy--damaged sperm" theory as well. By the way, I'm not a super-hero; I'm just lucky enough to have a flexible job that allows me to keep my kids at home (for now).

Cherry-sw

ElaineTherese, I red an article about the the correlation between fathers age and the risk they children developing schizofrenia, but it said that it is mostly valid for men who are in their 50-es and had some hereditary factors. It did not mention autism though. Your situation is challenging, stay strong, Cherry

Cherry-sw

---

The truth is as Posey said there is a thin line between people listening and feeling compationate and turning away thinking why is it all about them, how all this our fault that all this imposed on us and make us feel bad? I have now no contact with two of people who I have considered my closest friends. One of them has a mother who had bc twice and is from her mother side of Jewish ancestry, which means she has an increased risk of developing it herself and she has no family. Both of them do not live here so they could not help much but stay in touch, talking to me and listening, guess what, they did not, and I conftronted them about it and got excuses but the same behaviour again, I got angry and received radio silence. My other friend contacted my husband telling him I became inadequate and impossible to talk to. I was ashamed. To begin with nobody did talk to me since the diagnosis, I am a pariah,we wish you well with your treatment. This is the first reply I got from my friend: it is treable! I talked to you guys more than I did to anybody since my diagnosis, I am up for this friendship thing with whoever wants it, I believe I lost for good a friend I had from the second grade. The reason I believe, no one wants to be reminded of itin their daily life. As coachvicky said once you will know who your friends are and this is a gift most people won't have.

What I am trying to say is what we see with pink ribbons makes us all sick, no doubt about that, but it is all about marketing and we are not a target group. For us it is hypocritical and unethical but it is called spreading awareness for the reason. What do people know about other cancers? Nothing much, much less than they know about bc. So even if I cannot stand it I appreciate them talking about it, and it is easier to raise the funds positioning it like thanks to your contribution women who get bc live. If they instead start telling there is no cure and women die, then I believe they raise less money. I don't know. But another example, without revealing much about myself but I am working in pumping business and close to Marcom department. Imagine a seweage pump, how do you sell it? Ok, there is no need to sell it to a common man on the street but still you have to produce a lot of marketing material, it never contains the actual picture of how this pump actually looks in action.

People think bc is curable, this is it, they have to find this cure, it does not matter to me how they raise the funds or spread the awareness to raise more funds and that this money also pays the fees of expensive marketing consultants who are making all these strategies. And what about researchers, do you think all those fellows are contributing? What percentage of the funds poured into research actually give some dividends in form of breaking through medications like targeted therapies? Do you know how many of them just are going to work day after dayto their research facilities wihout much ambition to achieve something, I have friends in research, believe me it is all about making a living in the first place. But we never question this aspect, we just feel this awe when we talk about research and never critisize it because this is where our hope is.

Cherry

Tresjoli2

Aww thanks for the love guys! Remember my husband and I went through several miscarriages and then a successful pregnancy with a baby that never slept (for two years!!) before I got cancer. He and I are just hitting the reboot button and remembering how to live without a crisis, cause it was just too much. The sex thing just has not helped at all. But we will get through. Didn't mean to make things sound so dire love to all...but imagine being in fight or flight/grief mode for 7 years, and then...stillness. it was like waking up from a nightmare and saying wait, who are we again? Oh yeah husband and wife! Lol...

Kattis894

Cherry, I had 3 infusions of FEC and 9 of Taxol before my operation. Just wanted to reply quickly to your question but think you already have gotten your answer. Depending on the size of the tumor the treatment varies, some get operation first, treatment after like you having a smaller size tumor. I agree with SpecialK using the "heavy artillery" might not be beneficial in your situation and just cause more harm, but who knows what is best...I think you have to follow your instinct, heart and trust your medical team, the later so important threw this hole ordeal.

I have been working full-time for 3 weeks at my new job. I am doing it but it is hard and would love to sleep in at least a couple of more days a week...:) but it takes my mind of the cancer and got to love that. A friend of mine being triple negative just had a recurrence and it will be her 4th so praying for her and her medical team to get her cancer under control one more time.

Kattis894

Swedes donate a lot Cherry...I have a company and we have donated a value of half a million US dollars to women who undergo chemo threw my daughter company based in the US...just saying...I am closing my company after my diagnosis and now working a "normal" job for the first time ever...so all my proceeds, stock etc is being donated for this cause..:) Myself and my coworkers are very proud to be able to do this...and hopefully we all get some good karma from it..

coachvicky

When it comes to donations, I only donate and ask others to donate to this site (breastcancer.org). I would have been lost with the research on this site and the support from others such as all of you in this forum.

When people found out I had breast cancer, I was surprised at the reactions. A participant in one of our Leadership Program gave $100 to the Susan B Komen Foundation. A $100. Really. That is a lot of money to me! Another participant made me a pink and grey quilt that fits a king size bed. She hand made the thing! I was on Facebook and found a friend's daughter running in a local race with my name on her shirt. And a friend who coaches girls volleyball sent a picture of his team playing in some tournament with my name.

I didn't know any thing about any of this until it happened. What I realized that they were trying to show support in some way and maybe the only way they knew how to.

One time I arrived 2 days into a training were conducting in the Northeast. I live in North Alabama, USA. I had chemo on a Monday, Neulasta on Tuesday, and got to the training on Wednesday. I had to get myself in to the group. It was my first time to tell a group that I had cancer and was taking chemo. All three trainers sit upfront for introductions. My husband, Richard, and they other trainer (and personal friend) joined me when I did my introduction. I turned to Richard in tears. It was hard to get my introduction out. Then I saw he had a T-shirt over his dress shirt. The T-shirt had a big pink ribbon on it. The shirt read "my wife's battle is my battle." It has been his battle physically and emotionally too.

I melted and finally got thru the introduction. Then one the participants blurted out something like, "I didn't know you had cancer, I just thought you got an edgy haircut!" That sure gave me a different perspective! Here I was worried about how I looked and some 30 year old thought I was "edgy."

And about the trainer who is a personal friend... She was reading a book in the hotel lobby during some off time. I asked her what it was. It was a book she found written by a BC Survivor on how to be a friend to someone with cancer. She told me that she didn't want to do anything wrong.

I understand that those ribbons and especially a pink cake can be annoying as well as superficial. For me, I felt these people were trying to show support. Some people that I thought would show up, never did. That hurt a lot. So for those who did show up, I accepted what they offered in support.

Vicky

Kattis894

I did not mean to brag Vicky...but we closed shop and was able to do this so I am happy about it. Any kind of contribution is of great value, especially time and many of you ladies here give so much time to others that I am overwhelmed by this kindness. We all do what we can all over the world to beat this illness for so many. The support and information given from this web site is completely priceless. I deleted my post in case someone finds it offensive and bragging is the last thing I am interested in at this point.