TRIPLE POSITIVE GROUP
Comments
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wpmoon I'm considered young (although not real young) because I was under 50. Do you want me to tell you about my friend that is triple negative and is 3 years out. She was diagnosed at age 22. You need to look at the specific stats given to you by your oncologist.
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WP,
I was diagnosed Triple negative back in 1990 when I was in my 30's . They gave me a poor prognosis and yet here I am, having lived long enough to deal with this bullshit again. Back then they didn't even know what tripel negative was they knew I was hormone negative with an aggressive cancer and I obviously wasn't HER2+ pre discovery of herceptin because I'm alive today and when I saw my path report from UCSF adpfter being diagnosed with triple positive last year the first sentence stated that looking at my previous stuff from 25 yrs ago I was obviously triple negative. I was trying to get pregnant at the time I was diagnosed 25 yrs ago, never had kids afterward because of chemo pause
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I have spoke to my oncologist about my age and recent pregnancy..she believes I'm nide negative which is believed to be a big factor and also these studies are before newer drugs came around such as herceptin and perjeta she truly believes that in 10 years the survival rate will be much higher due to these newer drugs to combat bReast cancer..I hope she's right!!!!
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Not everyone dies from breast cancer that was HER2+ before Herceptin. It just was one of the poorer prognosis.
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i agree lago. Stats are going to change. I'm 35 and don't dwell on stats. There are far too many from different sources. Be your own advocate but also work with your oncologist. It's a good thing~ Edited to add I like stats though not gonna say I don't look
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Just weighing in: I'm 36 and had very aggressive (grade 3 and multifocal) +++ BC before mastectomy. My nodes were negative, but we're doing chemo and a year of Herceptin anyway, just to be safe. Both my surgeon and my MO are thrilled--my surgeon gave me a high-five--that the cancer was +++, because curing it is a distinct possibility. The combination of surgery, chemo, targeted treatment, and endocrine treatment, while they don't guarantee anything, reduce the risk of recurrence pretty significantly.
All of that said, I'm aware that it's a possibility. I try not to think about recurrence (especially since I'm still in chemo); worrying about the future just strips me from being present in my life right now, if that makes sense. Is recurrence a scary possibility? Yes. Is being cured also a possibility? Yes, and I choose to go with that right now, because it beats the anxiety-filled alternative.
Herceptin isn't likely to kill any one of us. Congestive heart failure is a very rare SE, and I'm willing to take that gamble if it means being cured of something that would otherwise kill me.
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My liver numbers have gone up and I have been diagnosed with Non-alcoholic fatty liver disease. They did not stop my tamoxifen, was told I need to lose the weight I have gained while on tamoxifen.
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I think I had some of the crappiest characteristics for my illness but I am so grateful I got a complete response & am still cancer free .. Im always afraid I am going to die so young but I pray I will grow old with my husband.
I was 24 at diagnosis, triple positive, poorly differentiated, grade 3 with characteristics of micropapillary carcinoma. It was the worst time to ever read anything online - but I pray I beat the odds
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Tonlee who started this thread was sure she was going to recur by now. She too has celebrated 5 years NED. Diagnosed age 42, stage IIIA (yes in her nodes).
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You seem to grasp this so well. I have a hard time. Having the 2 tumors and one with different grades I just go with the least lol
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jumbledbamboo my neighbor had multiple tumors and a ton of nodes. Diagnosed stage IIIB, triple positive right after me. She is coming up on 5 years NED.
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Me too. I had 3 tumors - one was almost 3 cm. I had 8 nodes, Lots of matted ones too. Lymphovascular invasion. Oh and Micropapillary type too. All Grade 2. So not terribly encouraging at all.
BUT
6 years is in a few weeks.
And
I really don't google much anymore. Why bother? I just do the best I can each and every single day. It's about finding balance and ultimately peace.
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just was at a Gilda event with an MDAnderson oncologist gynecologist who talked about this very subject. The possibility of endometrial cancer can occur and if you regain your period any time after or during tamoxafin therapy, go to a gynecologist that specialize in cancer. Bleeding can be an early sign, and at anytime in your body, you can have two different types of cancer. Just be your own advocate she said. She also said that at any time your cancer can change, it is not a definite, but you must always be on top of any changes in your body. Cancer is always changing.
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Jerseygirl927 my daughter went to MD and those words echo still "pat attention to your body and any changes." Good advice!
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My consultation with an OBGYN is tomorrow
let's hope the irregular bleeding was nothing!!!!0 -
runningcello -- Good luck! I'll be visiting my OB-GYN soon, too. I will ask about an ooph then.
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I experienced some sadness last night.. I hate the feeling that I'm only 25 & the rest of my life I'll have to think about my cancer coming back & if I'll live to be older. It just sucks. I know it's a horrible disease at any age.. But it's like, I wanted to truly live without the fear of dying for the majority of my life. Diagnoses at 50 or 60 means I could have lived my life without the fear of dying or fear of leaving my future kids motherless. It's a heavy burden to be in remission because what does that mean anyways.
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Runningcello I know how you feel it's a terrible thing I hate when I think about trips and growing old seeingmy children graduating and not knowing if I will be around for it all I wish this happened in 30 years at least I would have a had a somewhat full life and seen my children become adults it's so hard and scary I must say I'm in a better place but I also take xanax as needed and a very low dose of effexor
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stephmoen I pray we both never have any recurrences. I am grateful for my belief in God because I believe no matter what comes of this life, I pray that what's awaiting me will make up for the suffering & bring complete joy to my soul.
I stray away from medications because I don't want to develop a dependence to anything but I do think they're extremely helpful .. Especially during those low points
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yes I also have a strong belief and relationship with God definitely helps me through..the effwxor was prescribed to me after I cried every night looking at my children it has helped so much but with time I hope to get off it I've never been the type to take medications xanax is being used from my anxiety with surgery coming up Monday can't wait to get it over with and move on! Enjoy the new married life Runningcello you deserve it! Hope you had a great honeymoon somewhere
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running cello,
I totally understand how you feel and want you to know you are not alone. I was diagnosed at 38 years old, I have 3 kids and it's hard to think of my mortality on a daily basis. I try to be positive and think optimistically, I have faith in God and pray regularly as well. I am truly grateful for all the wonderful women on this site who truly know and understand what we(breast cancer survivors) are going through! This is the biggest emotional roller coaster anyone will go through and we will have good and bad days. Stay strong!!
Kathy
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Hi all, I am so sad that I see so many young people with this. At least I am 54 now, and will be joining the stage IV group with both Mets to liver and a new tumor in opposite breast. Four years and seven months post original diagnosis.
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thank you all for the support.. I pray you all have long healthy lives.. I hate this stupid illness. It's dumb. Ugh
And stephmoen, I certainly enjoyed my honeymoon & have now began graduate school
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runningcello, we had 3 new members at our breast cancer group, the youngest was 30 and Dx was triple negative, she is single and wants kids bit they are scheduling total hysterectomy because she has the bracca 1 gene that is positive. No children for her, and the MD Anderson oncologist gynecologist saw no options. It was very heart breaking, but she was optimistic that at least she will adopt if she gets the opportunity to live long enough. She has already had chemo for the breast cancer and waiting for hysterectomy shortly. We pray that we can all accept what God has chosen for us to go through while we are here on this earth. Make memories while you can, while we all can. Life is not a given, but a gift for a short time.
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Running,
I know your feeling as when I was diagnosed I was in my 30's trying to get pregnant. I was given a poor prognosis as I was triple negative. I never expected to be around now that's for sure. That was 25 yrs ago. I know it sounds like a cliche but it does get better. I can't say I never thought about it for most of my life after diagnosis but the more time passed the more it was in the rear view mirror. I thought about it ALL the time right after chemo ended and I felt the same way you do....why do I have to deal with this now! At this age!!! But, as time passed it didn't consume me as much and I continued with my life. I had another cancer in my other breast last year and I have to say having this happen when one is older doesn't make it any easier. It's always freak out time. However, titles like this, support like this never existed back in 1990 because... Duh no internet so we were all on our own , plus because of not having sites like this it was very difficult at the time to find other young women dealing with the same thing. Everybody I met was someone the age I am now or older and so even though I made a lot of friends during that time we had different concerns and different lives. Anyway it's great we have a place like this to vent. Take care
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Runningcello sounds like it's time for me to post my speeches:
seat belt speech:
You don't assume you will get into a car accident every time you get in your car. You do put on your seat belt and drive carefully. Same with breast cancer. Eat right, maintain a healthy weight, exercise, and take your hormone therapy (if prescribed). No reason to think you are going to get mets until you actually have a symptom.
shit happens speech:
Some people win the lottery and become millionaires too but do you really think that's going to happen to you? Shit happens. Sometimes good shit, sometimes bad shit, but most of the time shit doesn't happen. Don't assume shit is going to happen to you.
What If speech
Remember the word "if" is in the middle of the word "life" for a reason. As long as you have life you will always have "what ifs". It's your MO's job to worry about those cancer "What Ifs"0 -
Suladog and Lagos well stated! I keep telling myself that I do not want to spend the rest of my life worrying about cancer!
Runningcello and Stephmoen understand y'all's feelings. My youngest at 25 was Dx with adenocarcinoma on her vaginal wall. That was one year ago she was dx in August of last year. She too has been on a rollercoaster! She was in the middle of planning her wedding which was in December. She and her fiancéeknew she would probably never be able to have children. They were married in Decmber and her chances of children are slim to none. She has to return to MD every three months for check up and she too has fears like y'all. But as a little more time goes by with good reports she relaxes a little more and tries her best not to let cancer define her and not control her. So as time goes by hopefully you will feel better as well
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Thank you all for your reminders.. I hope with time it just gets easier.. I had my papsmear and transvaginal ultrasound today and everything looked good so thankfully the weird period was nothing to be worried about.
I'm glad for this forum to vent when needed. I may take a hiatus for a short while just to try to not have my thoughts of cancer consume me.
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Lago and Suladog, thanks for that.
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Your welcome Kate
Thanks Gretagirl
and runningcello it does get easier with time. But it does take time.
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