TRIPLE POSITIVE GROUP
Comments
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Hapb, I think the chart is compelling. Although we can't nail down causation, there is clearly enough of a difference that we must look at everything we are doing here to harm ourselves. The very long article link I provided day before yesterday delves into many areas of causation.
Another thing we need to keep I mind is that in the developing countries, I'm sure there is a lot less reporting of BC than where we are...i.e. many very poor women will not be getting treated and will die of the disease before they even know they had it. That aside, I'm sure there still is a substantial statistical significance.
Speaking of stats, I am a bit OCD and did more probing into the Stage IV board here on this site. I looked at 279 women who had shared their earlier stage and type. Anyone who didn't do that wasn't included in the evaluation. To start, I wanted to see what proportions each of these cancers made up of the total to compare with literature on the same.
For ER+/PR+: there was a total of 165, making up 59% of the total
For ER+/PR-: there was a total of 27, making up 9.6% of the total. So if you take the aggregate of hormone positive types, that is about 69% of the total.
ER+/Her2+: Total of 14, making up 5% of the total
ER+/PR+/Her2+: Total of 25, making up 9% of the total. So if you take the aggregate of hormone positive and HER2+ types, that is 14% of the total.
Her2+: Total of 26, making up 9% of total. If you take the hormone positive Her2+ and add it to hormone negative Her2+, these make up 23-24% of the total Her2+ types.
ER-/PR-/Her2-: Total 22, making up almost 8% of totalThe above proportions seem to reflect what I've read in terms of breakdowns of BC by type. So, this suggested that I'm looking at a microcosm of the general population here...leading to what I really wanted to get at:
ER+/PR+: Of all Stage IV's, 36% were diagnosed denovo and 64% progressed from earlier stages (and these earlier stages were all over the map, but with more of a concentration in stages 2 and 3).
ER+/PR-: Of all Stage IV's, 33% were diagnosed de novo, and 67% progressed from earlier stages (so similar to the above hormone positive profile)
ER+/PR-/Her2+: Of all Stage IV's, 57% were diagnosed de novo, and 43% progressed from earlier stages
ER+/PR+/Her2+: Of all Stage IV's, 64% were diagnosed de novo, and 36% progressed from earlier stages
HER2+: Of all stage IV's, 35% were diagnosed de novo, 65% progressed from earlier stages
ER-/PR-/Her2-: Of all stage IV triple negatives, 14% were diagnosed de novo, 86% progressed from earlier stages (which were all over the map with respect to stages, with only DCIS not showing up at all)
There are some striking conclusions that we could make based on the above information about the various subtypes, understanding of course that this is not an official marketing research study. It hasn't been evaluated on the basis of a ton of variables.
With respect to Triple Positive and to a lesser but still noticeable extent Dual Positive, we can see that these guys move very fast early on and therefore many are caught at stage IV. But treatment is rather effective if caught prior to stage 4.With the hormone positive one, many are caught earlier because hormone positive cancers can be slower growing, but they are still aggressive and many from earlier stages progress over a longer haul. With triple negative, people progressed equally from Stages 1 - 3 (7 from Stage 1, 6 from STage 2, 5 from Stage 3).
Anyhow, just thought you'd be interested.
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Moodyblues,
My husband tells me I should stop Googling stuff because it only upsets me. But it really doesn't upset me because knowledge is power. I know how to sift through the bogus information. I know what sites are legit. If I hadn't done my research, I would have been shocked when the M.O. told me I would need chemo. I want to know everything: the good, the bad and the ugly.
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Hapb, do a lot of women quit the AI's due to side effects such as pain, stiffness, bone density loss, etc?
My last step for this will be to take a peek at our subtype (I'm actually really more ER+,Her2 +) group and look at those ladies. I can tell you whether or not they finished treatment. But for now, I better go to bed - first day back for the kids! for some reason I am completely itchy all over - good grief
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Posey girl,
Lots of women do abandon the AIs because of joint pain, stiffness, vaginal dryness, and various other side effects, such as moodiness and depression.
I'm on Aromasin, which has produced moodiness (gone due to Celexa), and osteoporosis (treated with Fosamax). But, I've been otherwise lucky -- no debilitating joint pain or stiffness.
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posey - the non-compliance rate for the full 5 years, or beyond in some cases, is anywhere from 20-50%, dependent on the source
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I have the stiffness, vaginal dryness, and I am not sure if my heightened anxiety is related to it. Warm flashes too (right now as I write this
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hap - keep in mind that not everyone experiences side effects, but those that do will post about them more often. I have had a few issues during the six year I have been on aromatase inhibitors (both Femara and Arimidex), they have not been severe enough to make me stop taking them.
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Hap, I think we have to recognize that how we deal with medical problems varies from person to person. For me, knowledge is power so doing my own research is therapeutic; for others, not so much. Humor is also my friend in tough times, so I laugh at myself a lot, especially when I catch myself being OCD about things like side effects.
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Regarding the chart from Susan Komen foundation. A few years ago I red during one of those Octobers that comparison of bc occurences between industrialized and developing countries is not just because developing countries have much younger population and lower life expectancy meanwhile bc occurs in average to women in their 60-ies. Women in developing countries simply do not live that long. However they have mentioned that the statistics in for example China show that women in wealthier strata, who have improved quality of life and therefore live longer, start showing the same incidence statistics as women in Europe and US.
Recently I red that Japanese women who moved to Hawaii have the same risk to develop breast cancer after 10 years. This was probably attributed to industrial world lifestyle.
Cherry
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ElaineTherese, I know I am obsessing over it but what was your Ki67? Did you ask your onc how long time they think it was there and how long time it took for it to grow? You stated that your tumor was 5 cm, was it only IDC or IDC+DCIS? you had neoadjuvant tretment and htey therefore could see how the cells are responding, when they do surgery first and then chemo there is no way to see whether the chemo works or not. You also get Perjeta when you are doing neoadjuvant treatment. Well I will see my onc tomorrow, hope she has time to answer my questions.
My nails start turning red from the nail bed, and hair is shedding. Now I feel that I am loosing my normal look, it was not so important to me before but now I feel I should probably considered doing cold caps.
Cherry
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PoseyGirl, these are very interesting results, looking forward to more of those. Of what I see those with ER+Her2+ progressed less from early stages than those with other subtypes.
I have found some other research, you probably all have seen it anyway and it is not about progression but it shows survival for different subtypes. According to it TP chart showed survival statistics right under ER/PR+Her2-.
https://www.hindawi.com/journals/jce/2014/469251/
I know we all are looking for something that will give us some peace of mind, the results that look good for our particular type.
Cherry
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Cherry,
My reports never listed the Ki67, and my oncologist doesn't think much of Ki67 as an indicator. My tumor was IDC, and it even had a little satellite tumor nearby! Yes, we were able to watch chemo work. We did an MRI and PET scan before chemo and an MRI and PET scan after chemo. The latter two scans showed that the active cancer was gone. I should also note that the lump itself shrank to the point where it was no longer palpable.
There was some surprise at how well the chemo worked because I'm 95%ER+/95%PR+. Apparently, chemo might not work as well for those with a high number of estrogen receptors. But, I was definitely Grade 3 and chemo does attack fast-growing cells.
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Danna. When I research, I only go to Breastcancer.org, Susan Komen and now, the new link that Specialk just put out there. I will go to other reputable sites/organizations that I 'know' are on the top of their game. Googling for me is the roll of the dice and there is so much unreliable information out there. I asked all who love me to do the same as a lot of info is outdated or gives the worst case scenario.
I love how so many ladies here can point out data with the research behind it to back it, it saves me a lot of time.
Feeling better today ladies! Posey, you're right, getting out makes you feel better!
Melanie
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@ Vicky,
We are a lot alike. I have not held my tongue towards ignorant people since I was diagnosed with cancer. If they can not accept the truth/ or not act / say stupid things then they deserve to hear what I tell them! LOL Not sure if I posted it on this thread about my Therapist that I "fired". She made a remark that I was "Obese" ( BTW I am about 150 and am 5'5") I was floored for many reasons. the first one is obviously what sort of professional says that stuff, 2nd I am not obese, maybe a little heavy for my size according to those stupid charts they have. 3rd cuz she was about 5' and weighed at least 290. So really....... I actually told her to look in the damn mirror and left the room.
another time a lady actually told her child that I have cancer and am contagious. She actually believed that. So of course when I was leaving I gave the lady a hug and kissed her cheek and told her she better get her ass to the dr!
One thing that always gets me is the remark " you don't look like you have cancer!" So a question to you ladies. What does a cancer patient look like. Am I not supposed to get up every day and put make-up on? Am I supposed to look like crap????
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Shelabela,
I think any incompetent person needs a good firing every now and then. So way to go for getting rid of the person that called you obese! Which you are not
I think people think we are to look like that shabby woman in the Neulasta commercial. I turn that commercial off every time it comes on. I'm thinking you got cancer, and forgot how to comb your hair?
Vicky
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Hapb, What I really like are the ones who know best what treatment you should have or should of had. I look at them and ask.... Did/do you have cancer? Are you a medical Dr? Oh you read that on the internet,,,,, well then it must be true!
Some actually said all my past bad judgement was finally catching up to me.... Really who says that. Don't we all have at least one bad judgement when we were younger. And this person does not even know me. Just some one who randomly walked up to me in a clinic. She was unreal. I could write a book about things people tell me. Maybe I could make enough to pay off my Medical bills at Mayo Clinic. HAHA
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Vicky, I know. I turn those off also. There a few that I turn off. Who needs that, And besides most that need the Nuelasta don't have hair to comb. LOL.
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An interesting article about the question of why some cancer metastasizes and why some doesn't:
https://www.newyorker.com/magazine/2017/09/11/cancers-invasion-equation?mbid=synd_digg
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Shelabela,
I think any incompetent person needs a good firing every now and then. So way to go for getting rid of the person that called you obese! Which you are not
I think people think we are to look like that shabby woman in the Neulasta commercial. I turn that commercial off every time it comes on. I'm thinking you got cancer, and forgot how to comb your hair?
Vicky
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ElaineTherese, If the tumor was no longer palpable how did they know what part to remove? Because I see you had a lumpectomy. Did they mark it in some way before chemo? I also understand that chemo hits all the cells that divide at the point chemo enters the system, doesn't matter if it is ER/PR+ cells or just hair cells, if they divide quickly which Grade 3 usually do it means chemo will go on them. At least this is how they explained it to me. Cherry
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Shelabela, I just translated lbs and feet into kg and cm, I am 168 and weigh 66 kg, weighed 69 when I got diagnosed, then went to 63 and now it is climbing up again. How can one with this eight be called obese or heavy? Isn't it like your normal weight is your lentgh minus 100? i will deploy yours and coachvicky's tactics if anyone will ever drop an insensitive comment, I have decided I will rather be this bitter cancer lady than will just swallow it because people think that cancer could never happen to them. Cherry
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Cherry,
Yes, the radiologist inserted a surgical marker in my breast so the surgeon knew what to remove. He just removed a golf-ball sized amount of tissue around the surgical marker during the lumpectomy. Hmm, there are studies which show that it is harder to get a pathological complete response with a high percentage of estrogen receptors.
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ElaineTherese, I did not know that about ER/PR+, do you have any links to these studies?
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Hi Cherry!
It states that "estrogen receptor–positive cancers are the least responsive to neoadjuvant chemotherapy."
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ElaineTherese, thank you for that link. Funny how the brain works as I had read that article months ago. My only take away then was that I should not expect a PCR due to being highly ER+. So, when I had a complete PCR, I took that result as very unlikely and extremely positive. Reading the same article again, I realize that result may not be all that. I may need to sharpen my pencil and get back to researching
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ER+ usually does not fully respond; it's true this is expected. And the jury is out on why studies show that pcr in luminalA and our type is not showing huge prognostic gains; I have done a ton of reading on it
. One well respected study said that pcr is a good thing no matter the subtype, but that it becomes truly exceptional with Her2 and triple neg. after being very disappointed in what I was reading (as a pcr person), I decided to stop. I didn't get a ton of stupid remarks, but a couple people told me about someone they knew who had bc and died. That's really nice. Tell someone just diagnosed this...wtf? In these cases, they just don't know what to say and are scrambling to establish a form of connection or understanding. In a few of your stories, though, no. They are simply stupid people
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Shelabela you inspire me! I love your responses to these idiots. You are definitely not obese and good for you to get rid of that therapist. What's wrong with these people. I can't believe someone blamed your cancer on past bad judgment- boy if that was the case I would be in big trouble lol
I didn't realize until this cancer diagnosis how insensitive and just plain rude people can be. If one more person says "aren't you glad to be done with this cancer stuff" I'm going to throw my bottle of Letrazole at them!
I just had a female family member grab my top and adjust it because "it wasn't sitting right". This was in front of a group of 15 men and women who all know my cancer story, including the bimbo that touched me. I responded with a few choice words after I got over the shock of someone touching my newly reconstructed boob!
Hapb - it just sucks that anyone could dismiss stage 1 as anything less than serious or say you're overreacting. That is so not true. These people are absolutely clueless. You are a fighter going through cancer for the third time! -
Hapb, you've been through so so much. You deserve a real break. As for Letrazole, as SpecialK said, everyone is different. I know two women who quit their AI because it made them depressed. But one has struggled for years with depression. But I don't have that problem. And others I know don't either. If one doesn't work, try another...but don't worry about that at all right now. Try not to let it consume you; you will find something that is ok, I'm sure
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It's not trivial at all! I have very thick, curly hair and it started coming right back. Letrazole hasn't affected that at all. Have you asked your doctor about it? Is your hair fine and thin?
I just did some reading on other forums and there are women saying that they lost hair with Herceptin or with their hormonal treatments. Some had your experience. I guess everyone is different. Have you tried Rogaine? There are hair growth options, but if you find one that works, you have to keep it up. I have a friend (not with bc) whose hair is thinning out like crazy. She said the hair growth stuff does help her, but you can't stop using it
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ElaineTherese, thank you very informative. The same must be valid for adjuvant treatment and in that case they cannot even verify whether the drugs are working or not since the tumor has already been removed.
I just came from the meeting with another oncologist in my clinic, I liked her very much, she was attentive and friendly, an elderly chief physician, very competent and willing to discuss everything. When she saw the list of my questions she admitted that we will not be able to go through them in an hour time and suggested we will book another meeting in three weeks. She also said that she will book an echo for me and was surprised that they did not do it so far, and she also said that if I wanted to I could get a scint scan but she said nothing in my blood indicated that they should order any scans at all. I know that no one can know for sure with this disease but it gave me a little peace of mind that will give me a short break from all my worries. I will be able to breathe a bit, which I need so much right now. I also asked if she can be my oncologist from now on, she said that she will try to arrange it. I also mentioned to her that I am worried a lot about my Ki67 and that I may be a borderline case for more aggressive treatment and she said that she did not think so but that she will bring my case for an additional multi-disciplinary conference to see whether the board will decide whether any other additional treatment can be recommended. Well, it is always something. That there can be such a difference between oncologists and how they treat you. The first oncologist I met just waved away all my concerns and I felt like this is it, if they cannot give me the answers what am I supposed to do?
I did not either got so many remarks about my bc, but we are keeping it private. At work I have five guys am working closely with, I do belong to another group that has its office in another city, but the guys and I still belong to the same department. The reason I did not tell them yet is that they earlier told me that four of them lost one parent to cancer, two lost their mothers to bc, one lost his mother to brain cancer and another lost his father when he was 13-14 years old. I cannot even imagine how they will feel and look at me when the news will finally get out. Me and my manager decided that we will tell people at some point in October because I am not comfortable with everybody knowing now. My best friend who lives in another country has recently sent a very cliche message to me on FB about how my husband and I shall not fight about this bc but stand united in front of this disease to be able to beat it. For some reason I just saw how she discusses it late at night with her husband telling to each other: at least we do not have any cancer, and feel better about their lives. I told her if she does not have anything meaningful to say to me it is better she will not say anything at all. It has been radio silence since. No, I do not want to tell people because I do not want to be disappointed. But I feel that if anyone will ever approach me telling that my bc is result of my bad choices I would need to walk away just to fight the urge to punch them. And I have to prepare a great line. Some people can be so mean.
Cherry
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