TRIPLE POSITIVE GROUP
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lovemommy ... Thanks for writing. Have you had genetic testing? Please do! https://www.breastcancer.org/symptoms/testing/gene...
Well, Ladies, I have Brother and we have the same Mother but different Fathers. It is just the two of us left except for some cousins. We got a call from the Chief of Police in his town. He has been the victim on caregiver and financial exploitation. People in his community have WONDERFUL to help him and rectify this situation. He has the beginning signs of dementia. He is well taken care of and getting the correct medications. It will all work out. His wife (a 50 year BC Survivor) died in October 2015. He devoted his life to keeping her alive and was her Caregiver to the very end. He never got through the grief process after she died.
A couple of things I am reflecting on:
- Getting through the grief process is critical to any recovery. I believe as women we grieve the loss of our breast(s) (parts or whole) and must get through the grief process to fully recover.
- Do I ever feel so fortunate to have had breast cancer!
- There really are worse diseases out there.
Vicky
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I hesitated to post this because I don't want to scare anyone or be a Debbie Downer, but after turning it over in my mind I felt like I need to add my thoughts about the conversation on being triple positive, and whether it is "better" or "worse" or worse than other arrangements of hormonal receptors and Her2 status. I have the advantage of being further out from diagnosis and treatment than most who post on this thread and my thoughts are tempered with that perspective. I think it is important to parse carefully what oncologists and/or surgeons say about this diagnosis. I don't think what they mean is that it is "better" to be a TP than not, but rather that it is "better than it used to be" before the advent of targeted therapy. Herceptin has been used for breast cancer treatment for more than 20 years, it is not that new, we have enough years of data on its use and how it has improved survival. It can't be "better" to be diagnosed with a subtype that is more aggressive, tends to be larger and higher grade, than a Her2- diagnosis would be and despite the use of targeted therapy the survival statistics bear that out. It is important to take into consideration that there are TP patients who either don't respond to chemo and targeted therapy, or who become resistant to it. While the Her2+ aspect of our diagnosis usually becomes less of a threat after the first few years, the ER+ risk continues. Anti-hormonals are not foolproof, we can become resistant to them as well, and for some of us, they provide less benefit than for others. Genomic testing has made some strides in determining who benefits more than others, but we are not there yet. While ER+ risk subsides at the 5 year point, it does not go away completely. These comments are not meant to be a contest between subtypes, and who has it "worse", but rather it is about truth. I place no faith in platitudes, and I personally think one of the keys to coping is to have your eyes wide open and process the reality of what it means to be TP, and then try to figure out how to move forward, through treatment - and past it, in a way that best suits us as individuals.
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Special,
Your years in this lousy club gives you a balance perspective of what to and not to expect.
Sometimes, I think Surgeons and Oncologist believe "you are going to be cured, just do the surgeries, treatments, scans ...". Maybe to stay sane they have to take that attitude.
As you write, it is critical to keep our eyes open.
Thanks for the post, Girlfriend! As we say in the south, "you done good."
Love, Vicky
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Thanks, Special! Very well said, as always.
We are so lucky to have you here to explain things in such a clear, level-headed, and informed manner.
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Yeah, I've been at this a while too, which is good and bad, but I'm still here so there's that. Being triple positive just means we are open to more treatments then a triple negative diagnosis would be, which in the long run, is better. Sometimes people read my diagnosis (outside of the stage iv boards) and get scared and believe me, I am too. However, I did get 10 good years in between and plan to get a whole lot more in the future, if I had to pick, I'd sure rather be triple positive.
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There is no good type of breast cancer. They are all bad and I hate them all equally!
My understanding: the HER2+ component makes triple positive cancer more aggressive than the merely hormone-receptor-positive breast cancer. As a result, before Herceptin, triple positive breast cancer used to have a worse prognosis than the merely hormone positive breast cancer. The use of Herceptin has leveled the playing field a bit. That doesn't make triple positive cancer good.Of course, the oncologist prefers to tell you that you have a type of cancer that has many ways of attack than telling you that you have a type of cancer with few ways of attack.
A close friend also told me she had done research online and had concluded that I had the best cancer type. This falls in the category of well-intentioned comments that people can make about cancer. Not worth getting annoyed about them. The person loves you and wants to see reasons for hope. That's good.
As a rule of thumb, for someone in perfect health to show up here and state anything that can remotely suggest that we are, in any way, lucky to have this cancer is not a good idea. It fails to reassure me. Same as early stage people posting in the Stage IV forums with optimistic messages about one thing or another, despite the clear warnings that those forums are for Stage IV people only, not for early stage people, not for relatives who have their own forums. There is nothing wrong with asking a question on behalf of a relative, or on behalf of oneself, but I think it is better to keep optimistic assessments for oneself because they are not reassuring for the person with the cancer I think.
Love and peace to all
LaughingGull
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My impression is that triple positive is better in the short term but not in the long term. We're probably more likely to make it to the five year mark, but triple negatives that make it to five years are home free, whereas we still have to worry about recurrence. After 15 years it's probably a wash. I also think that a triple positive that got PCR after chemo has a very good prognosis; your DFS at that point is something like 95%. For those of us who don't get PCR, we're probably about as likely to recur as HR+ Her2- patients, who rarely get PCR from chemo.
I'm scheduled for a CT scan next month to check on some little nodules in my lung that were found at dx. The last CT I had, after 5 rounds of chemo and herceptin, deemed them "stable", though they went from one 4mm and two 1mm nodules to just one 3mm nodule. Should I even bother with this next CT? I feel like there is no result that will tell me that those nodules weren't cancer. If they're gone, smaller, or unchanged it seems it would be indeterminate what they were. So the possibility of getting any peace of mind out of this scan is zero. On the other hand, if they are growing do I even want to know? Or is it better enjoy a few more months/years of blissful ignorance? What would you all do? Is it worth the radiation? I find it a little ridiculous to be worried about the radiation in a CT scan when my actual radiation treatment was something like 6000x as much radiation.
And I've had one more bit of puzzlement lately: I did radiation at a different cancer center than where I had chemo and surgery, and they requested my pathology slides for review. The slide that supposedly had 2.1cm of cancer on my surgical path report, the other cancer center measured at only 0.5cm. That seems like a huge difference. But I had FISH done on that slide in between the two examinations. Would they have cut part of the tumor off the slide for the FISH test or do they do it on the slide? Does anybody know how that works? They are both very highly regarded institutions, so it's hard to say which one is accurate. Both institutions were pretty much in agreement on my lymph node pathology. I don't know what to make of that. I feel like if my cancer went from 2.8cm to 2.1cm after chemo, I need aggressive treatment. But if it went down to 5mm maybe not.
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SpecialK,
Thank you very much for sharing those thoughts and that information. As someone who was diagnosed in early September and went from being extremely healthy to extremely sick in a matter of months, I find it a bit frustrating when anyone tries to tell me this is a "lucky" diagnosis. I know there are more terrifying diseases, but the treatments and risks for this cancer are serious and taxing. It is not the kind of thing that benefits from comparisons to other "worse" situations.
I'd also like to offer a word of caution to those that want to tell others in a situation like this that it is a "better" type of cancer to have. When you tell someone that is already exhausted, scared, overwhelmed, overtired, and over the whole situation that it is "not so bad because ...," you may think you're helping, but you are also forcing them to think of all of the reasons this doesn't feel "better" or "lucky." In the end, that line of conversation may be more comforting to the talker than the listener. I say this as someone who often wants to respond to those that reference positive statistics by saying, "You realize I already had to end up on the wrong side of those statistics to be going through this in the first place, right? Statistics aren't all that comforting."
Again, thank you for sharing your thoughts. They made me feel better about my own fears and frustrations with the onslaught of sunny-side platitudes that come from people (even though they are well-meaning people that love me and whom I love dearly).
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I'll add to what Special said (I agree with her 100%) having had both triple positive and triple negative.
I'm just over 8 years out from tp, which is good - but the ER+ part of that dx gets higher the number of years I'm out.
I'm just over 3 years out from tn, which is also good. Apparently the most recurrences or mets occur in the first 3 years. My risk of it recurring after 5 years goes down dramatically.
Of course, as we know statistics are not infallible. My statistics could be that I have a 100% chance of developing mets. Someone else with my exact dx could have a 0% of developing mets.
I have learned not to worry. If I do develop mets in the future, I'll deal with it then. I don't develop mets and have spent all my time worrying about it, that would have been a monumental waste of time and energy.
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hapa--I'm so sorry for all of it. I have no information or even advice for you, other than your first question reminded me of when I was pregnant with my third child and old enough that amnio was recommended. It didn't take me long to say no thank you. The point was what would I have done with the information from the test? I wouldn't have acted on it, so why have it? I guess I'm suggesting that if the results of the CT scan would spur some kind of action/treatment on your part, probably go ahead and do it. If not, then maybe it's just as good not to know. I hope someone else weighs in on your pathology slide question.
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I'm glad I found this thread. In a little bit I head over to start my 1st Herceptin only treatment. Guess it's a good thing DH will be doing with me just in case something happens. My oncology nurse is really good so hopefully she'll see me up for the 90 min dose... I know I'll be getting Benadryl only as a pre-med. DH was wanting to go out for an early dinner after treatment soooo I guess we'll see how it goes.
~Nanette
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Nanette7fl, just wanted to let you know I was on TCHP for 4 months and am now on Herceptin and Perjeta only. I have had very few SE on H&, a drippy nose a couple weeks after the infusion, most do have that but otherwise feel good. I have never had any nausea from this medicine. Wish the best result for you. Take care.
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ugh we tried to do the new dose of Herceptin only of 6mg/kg in 20 minutes but 1/2 way through I had to have the nurse stop. I got so nauseated and wanted to vomit like someone flipped a switch! So she gave me Kytril (sp?) & that helped a whole lot. So my remaining 11 will be done over 1 hour with this pre-med...and she didn't give me any Benadryl...
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nanette sorry about the Herceptin troubles. Not sure what to say bc I didnt have any problems.
Shout out to tresjolie, sounds like you may have some of th is post-traumatic stress thing, right? I am going to meditation in my cancer center and is helping me keep the negative thoughts at bay
Hapa thats a tough one. I think I would want to get the scan and aggressively zap those lung little bastards if they are still there. Not saying that long term that would be best, but I think that would be my inclination. And I would also would want to understand those differences in the pathology.
Sweetie, I get you. I have a tough time with anyone emphasizing to me any silver linings of my situation, even if they have the best intention.
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Nanette7fl:
I think I actually did get some nausea during one of my herceptin infusions but in my case I think it might have been a little associative.
When I was doing the chemotherapy, I usually felt a little nausea due to the stress and discomfort of the cold cap combined with the bad taste the pre meds and saline flush left in my mouth and probably the chemotherapy as well so my brain associated things reminiscent of that experience with nausea. I spent all 5 hours
I've had to retrain my brain to stop associating sitting in that chair with nausea.
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Try not to panic about the first Herceptin only. I had a 90 minute drip the first time and then went to 30 minutes with NO problems. The nurses were great and MO was seconds away from the chemo room.
I think anyone who tells us we are lucky to have a particular kind of cancer, hasn't had cancer! I am just very grateful that mine was caught early by a very good tech. Her skills and caring have more to do with my condition today than luck did.
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Hi Everyone,
I didn't have any SE"s with Herceptin only - except that dreaded drip drip of the nose. The IV was an hour long. Maybe a little tiny heavy legged when I left, but I was able to do some errands afterwards, drive myself no problems.I saw my MO yesterday and he switched me from Arimidex to Tamoxifen. And he said I didn't have to take NERLYNX . Oh Thank Goodness!
Just amazes me how differently people react to medications. Thanks Everyone, this site has been so informational. Best of luck! Rj
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hey guys...I am trying to figure out what I should do...I havent had a period since July 2015. I started spotting today...why would I start spotting all of a sudden? Of course it is Sunday, and I am home alone with my six year old and a snowstorm is blowing in. I am freaking out a little bit?
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Tresjoli,
Could your period have returned? You're only in your 40s. Still, you might want to have it checked out if it concerns you. Has your OB-GYN been keeping an eye on your uterus and cervix? Anything unusual there? Not to freak you out, but kmntwins (from Chemo in July 2014) recently had some spotting on Tamoxifen, and it turns out she has uterine cancer. Hope that's not the case for you!
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Tresjoli, it's probably nothing but you should have your MO check it out.
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Talked to my OB/GYN. Ultrasound Tuesday, appointment Thursday to go over results of the ultrasound...fingers crossed Aunt Flo just decided to rear her ugly head again 4 years later...
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Fingers crossed for you, Tresjoli. It probably is just Aunt Flo, but better to be safe than sorry. I've been on Zoladex to prevent Aunt Flo's return, but I'll be taking a Zoladex vacation soon to see whether or not I'm in menopause.
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Hi rljes did your MO tell you why you shouldn't take Nerlynx? You and I have same DX and I am still trying to decide if I should do nerlynx after HP or not
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Princess - Yes, my MO surprised me by saying he thought I didn't need to take Nerlynx. What a relief. The thought of Taking this drug was really bothering me and I was leaning towards turning it down anyway. My MO is a person who does NOT believe in SE's, so this surprised me that he acknowledged the 'possible harsh' side effects of Nerlynx may not agree with me. Plz Let us know if you start - there is a closed FB support group that is quite informative for NERLYNX - I believe its supported by its Drug Maker = PUMA.. someone on this thread sent me the site. I'll post it if you want. But be warned, its pretty bad. (the SE's Posts) And we have to remember, its usually the people that have bad SE's that post - not the people that have no issues. Best of Luck!
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Hi rjles, thanks for responding. Arrrgh on the SEs, now I don’t want to take it at all. I am still on H&P won’t be done till June so I still have sometime before I really have to decide on Nerlynx.
There’s no easy decision about this journey at all, phew!
Thanks and stay warm
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tres - hoping that your spotting is normal body function resuming, but glad you will get it checked out.
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Princess - a lot can happened between now and June with Nerlynx. I want to be fair and remind you (and others) that you may not have any SE's with Nerlynx. I have several auto immune diseases that factor in, and in my case, I think taking an immune suppressant outweighs the Nerlynx. (can't take both) Best of Luck.
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rljes, okay now I understand your MO’s decision. Thanks for clearing that up. I will see mineon thursday, I do have more questions for him. Thanks and best wishes
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ultrasound is done...bleeding is intense...now we wait. I see OB/GYN Thursday...
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Only a couple of days till Thursday, tresjoli, good thing to have it checked. Keep distracted and very soon you will find out. Are you worried?
Does it feel like a period? Cramps? Pre breast cancer, I had an episode of thickening of the endometrium, also with bleeding, but it did not feel like a period. It did not have the same rythm (pms, then cramps, starting slow then increasing then decreasing); bleeding would come in fits, after exertion for example. It would not relent. Maybe it is your period, and that contributed to your feeling down. My bleeding resolved with hormone treatment, biopsy found tissue compatible with polyps, but further analysis found no polyps. I never had that again. But after breast cancer, when I heard that Tamo could cause thickening of the endometrium I opted for oophorectomy and AI. I am older than you though, already perimenopausal.
Hang in there, sister!
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