When do most recurrences for HER2 happen? Revived round 2...
I have heard a lot of different answers but am wondering what newly diagnosed women's doctors are saying regarding this question. I never actually came out and asked my oncologist, but she did say that if I survived five years, it would be uncommon for my Her2+ cancer to come back, due to my being also hormone negative. She did say, I will always be at risk but the risk will be very low after five years. There are some doctors who state that the greatest risk of having a recurrence linked to Her2+ is the first three years. And yes, I think some think that this risk is different between hormone negative and Her2+ and triple positive groups. So I am wondering what newly diagnosed women are saying. I also want to know what doctors are saying in regards to a locally advanced cancer, like mine. There are some forms of stage IIIa that are considered "early stage". These are the cases in IIIa of having a large tumor with no nodes, or a large tumor with 3 or less nodes. Once you hit the four nodes, regardless of your tumor size, it is considered locally advanced stage IIIa. I am interested in hearing what doctors are saying to women who are early stage and locally advanced stage. So what are your doctors saying?
Comments
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I don't think anyone has a magic eight ball. My 30 year old doc was not terribly encouraging, and had the bedside manner of Atilla the Hun. I know my stats. 8/13 nodes with multi focal, multicentric tumors. I don't need to hear that I am "EXTREMELY high risk" all the time. So, I fired her recently. I got a doc who has been at this for decades and says that my chances are as good as anyone else's. He orders whatever tests I request, and constantly tells me that if I just get over the hurdle of the first few years, my stats improve. I need my docs to be positive. To be healers. I don't see lots of that in the cancer industry. I see oncs that WAY overbook, leaving stacks of people in the lobby hours past their appointment.
I try to live every day to the fullest. Some good days, and some days I can't sleep thinking that my young children might not have a mom in a few years. I stay off the 5 year check in threads. I sure don't see lots of long term her2 folks posting on there, regardless of stage.
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I am happy you started this new thread. I am curious to know what that stats may be now. From what I understand herceptin has changed them and keeps changing them as we go.
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My dr told me, when I made it to 5 years, that I had about a 1 percent chance of my stage 2, er/pr - cancer returning.
It gave me such piece of mind, I had beat it!
Four months later I was was diagnosed with liver mets. When I asked my dr how this could have happened, he shrugged his shoulders.
I think it is futile to try to figure out what what your risk is after 3 or 5 or 7 years. The risk is low, but it is never zero. No one will get a better percentage estimate from their dr than I did, and it meant nothing.
I have been Ned for 16 months now, and I have started seeing a therapist to deal with anxiety about my cancer coming back. She keeps telling me to focus on today. To say to myself, " today I am healthy and cancer free, that's all that matters " I know she is right. I know the risk of it coming back now is high, but I just keep focusing on today.
Laurie -
i think we all get caught up in the stats and what i have found that no matter how you look at the numbers/get different opinions the worry will NEVER go away
before i started treatment i was told 23% change of recurrance based on my stats, after I had a complete response to neoadjuvant chemo i was told "in the 90s'" that i would not have a recurrance. But like Laurie said in her post above, do the better percentages/stats really mean anything? unless they tell me that i am cured (which of course they cannot) then the "stats" mean nothing - do I worry any less now with my "better stats"? absolutely not. The fear still haunts me every day
i read myself silly for months on recurrance stats, i have learned in the last few months that unfortunately it is what it is and try to focus on today. We did all we could do to fight this and then the rest is, well, out of our hands
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I just hit four years since diagnosis in May, had chemo first and a complete response, then herceptin (it was different back then, w my dr anyway) then I did a clinical trial... My clinical trial dr said that w my response to chemo and then getting herceptin, my recurence risk was very low, especially after three years. Over the years i have seen some w my diagnosis reoccur, but more not reoccur. i honestly think its all different, a good response to chemo is defintley a plus, but Ive seen girls who had a crappy response to chemo and there still just fine... Not very helpful hey Lol! I will say it gets easier once u hit the three year mark....
Laura
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I am going to be six (count 'em 6!) years out this October. My onc. told me that I have a "well over 90% cure rate" - yes, used the word "cure".
I did 2 1/2 years of Tamoxifen, 2 1/2 years of Femara. No rads after my mastectomy as 0/16 nodes. I am seeing my onc. on July 19 for what I think will be my final appointment with him. I will take my last Femara pill that day and he will discharge me, if all goes as planned.
Being triple positive, I know there is a risk of recurrence later down the road, but it is low. I believe I have done all that I can to prevent recurrence, but I will speak to my onc. about anything "new" out there for me, and report back.
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My mother was 70 when she was first diagnosed.. she is 83 now..She was triple positive, had a lumpectomy, 2 chemo infusions (her choice), and some radiation, no herceptin. She is NED!
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You all gave me hope! It was scary enough to find out I have BC but more scared that I have HER2+ but so thankful for herceptin! I always looked for survival stats but I stop doing that because it drives me nuts with all different ways of stats. We all have risks not from recurrences but from anything in our life, driving the car, fly the plane, or robbery, etc. right?
xoxoxo
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Stats can be helpful, or they can be meaningless. In my case, they were meaningless. I had such a great response to treatment that we all assumed everything was fine. I asked my oncologist for a pet scan when I was done my year of herceptin because I wanted the peace of mind of knowing I was all clear. I thank God we did it because there was a gigantic tumor soaking up the right lobe of my liver. I didn't even feel it - I felt great, in fact, so we were all shocked. But it's ok, God is good, the tumor is responding to treatment.
Penny -
Ok so when you say you have been clear for "X" amount of months or years. Where do you start from? Surgery was 10/10, Chemo ended 3/11 and Herceptin ended 11/11. I have now been without herceptin for 8 months. Is that how you count it? Or from your date of sugery?
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I start counting after surgery
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My onco said to start counting from the day you were diagnosed. If you have surgery first, or chemo, or radiation - you are still a "survivor" and that begins the day you are diagnosed. What "I" use.
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My onc. also said start counting from day of diagnosis. So that's the date I use.
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Lauriesh, did you get herceptin the first time around?
I dont know why but all of a sudden i just feel like im a short-timer.
Im trying to fight this with all ive got, but in the end, it's God who will decide.
He works for the good of those who love Him. -
Yes, I did. I did 4 ac, then 12 taxol/ herceptin, then a year of herceptin.
I count from when I had surgery because that was when I was "all clear".
Laurie -
This past Friday the 13th was my 2 Year Survival cancerversary - hope that means good luck! My onc had told me to count from diagnosis.
I try not to pay too much attention to stats - I remember at my biopsy I was told not to worry because "80% of biopsies are benign" - that obviously didn't work out for me.
I had surgery, chemo, radiation and a year of Hercepton so I figure I have done all that I can at this point and it's really out of my hands. I just carry on, hope for the best of whatever hand I'm dealt
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Lauriesh, your tx sounds exactly like the one im getting. Hopefully, without recurrence.
Caya, almost 6 years out. I envy you.
Marjie, you're right, do what we can, carry on, and hope for the best. -
Stats are just a way for us to try to devine what will happen to us, but really, it's not in your hands. You can't control it and you can't know what will happen. I recurred with liver mets four months after my year of herceptin ended. The thing I've learned is that all this worry we do about time and recurrence rates and statistics is meaningless. Just live your life in such a way that if it comes back, you have enjoyed yourself. And, if it doesn't come back, you will have enjoyed yourself. Because, it's all just a shot in the dark.
During the four months I thought I was done with treatment, I was happy. I had decided I was not going to worry about cancer, that I was not going to "miss going to doctors" like they say you do, and that I wasn't going to worry over every ache and pain. I was going to put cancer behind me. And I did. So, I am pretty happy about those months when I thought it was over.
I recommend that everybody who ends treatment makes a plan to not dwell on it too much. Try to put cancer behind you, because whether it comes back or not, you don't want to live your life in worry or fear. It's wasting time.
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Coolbreeze: Thank you for those words. This whole Bc is a crap shoot, totally random. Even down to the node neg/node pos prognostic factor. Things we are told at dx that frighten us and yet really nobody can truly predict the outcome. Perhaps the wisest comment my onco said to me was: "there are no guarantees Liz."
I have follwed your posts and have been wondering how you are doing?
Liz
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coolbreeze...you are absolutely right. You don't know, so why worry. Live well while you feel well. If we are NED then we need to live like we are NED. There is a little adjustment moving on in the recovery phrase, because you are still seeing so many doctors and dealing with treatment side effects. For me, for now the Herceptin treatments are done, but I'm still dealing with the side effects of the drug. I can't do anything about the future so why worry. Before moving on, I have one more reconstruction surgery, a few more appointments and tests, but after that I need to wash my hands of all this and move on. Recurrence, I'll cross that bridge if it happens. Right now, I'm not going to let it rob me of life I have right now. I'm not sure if I'll miss seeing my doctors or not. It's harder to leave a few of the friends I made from bco than the doctors.
With that said, I do want to insert that once we leave cancer land recurrence will always be in the back of our minds. We will wonder if new aches or unusal happenings in our body is the ugly beast rearing up it's ugly head. It is the shadow that lerks in the alley, the screening test around the corner or the tap on the shoulder by a well meaning person reminding that you had cancer. For example, recently, someone asked me at a social event how I was. I said fine. She then introduced me to her friend as a cancer victim. I said, no, I'm NED.
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That's what I hate...being introduced as a "victim". Sometimes I don't know what goes through people's heads! Sometimes I feel as if I've been redefined by cancer - it hasn't changed who I am, but there are some who don't seem to get past it.
In general I carry on without giving it a second thought.
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Gee, I've never gotten the "victim" one yet. I don't think I'd like it very much either!
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Ditto, Weety. "Victim????" No, thanks.
I'm 4 1/2 years from dx and July 30 marks 4 years since the last TCH. Live life with the appreciation and understanding that each day is a gift. Even the ones when the cat pukes on the carpeting, the dh is in a crappy mood, the AC breaks down (in Phoenix in summer), and the 17-year-old is surly. Even those.
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The "victim" wasn't the worse comment. One friend asked me how long I have to live. I said, who knows how long all of us will live. Most just say, how are you. I say, fine. Then they say, how is your health. I again say, I'm well. Some then will try to find the word cancer. It's amazing when you are dx with cancer that people think it's terminal. I suppose once upon a time, I might of thought the same thing, because I didn't know. I usually say, I'm fortunate to have had early stage cancer, and the odds are I won't have it again. People don't always believe me since I've been dx with it 4 times in 4 years. I try not to talk about it in general as I don't really think people want you to. If I were to tell them all that I've gone through, I think it would be too much information and overwhelming. it would be awkward for both of us.
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Eve: The "how long do you have to live?" comment shocks me, but unfortunately doesnt surprise me. I have found that people also overdo the "how are you?" question, almost as if our stock answer of "fine" isnt enough for them.
I am currently debating whether to get in touch with my oldest friend, Tracey. My birthday is coming up and we normally get together. However, I feel that she has made very little effort to keep in touch and although she is a hairdresser, zero support during my treatment. She once cancelled an arrangement at the last moment to come to my house and dye my hair (first hair dye post chemo) I want my birthday to be a happy day, no talk of cancer and yet if we meet up she will focus upon it because she hasnt seen me in so long.
Our problem is that those around us can make it hard for us to move on....
Liz
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Actually i think people do not know what to say, then they end up saying something silly to make up for it. yea sometimes its better to stay off the subject so it does not become awkward. As far how long have you got, i mean you could cross the road and get mowed down by a truck and so could they. When our time is up, it is up what ever the circumstances. i know of people who and probably heaps of us do, that have had a terrible car accident and come out scot free, without a scratch, and others who have been in a minor one and been instanly killed, SO WHO REALLY KNOWS. just as well we cannot see into the future or we would bumbling wrecks. cheers folks.
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Hi Ladies. I am over 7 yrs out from a er/pr neg., her positive stage IIIC BC. and well. If I took stock in My really poor " stats" back in my early days Ihonestly don't think I'd still be around. Only God knows why I am still here and many with far less disease have passed away.
I have also experienced deaths of 5 family members who cried at my dx. They're gone and I am alive and well.
I am thankful for each day , and have given up trying to understand " why?"
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Thank you, Linda! I, too, have a friend, stage II, triple positive, 9 years out, no herceptin, and a local badminton champ to this day!
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Had invasive cancer in right breast Her2 positive in 2004. At that point Herceptin was only in clinical trials and did not qualify
Currently dealing with DCIS in left breast discovered on mammogram. Learned this week that it is Her2 positive.
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Patti,
Sorry to hear you're dealing with it in the left breast. Thank goodness you caught it at the DCIS stage!
I believe the development of breast cancer in the other (originally clear) breast is considered, regardless of pathology, a new primary cancer rather than a recurrence. I may be mistaken. Anyone else out there know?I'm assuming based on your original treatment protocol that your IDC was estrogen positive in addition to HER2+. Is that correct? Is your DCIS also ER+? Any difference on the hormonal receptor expression between the two pathologies? Just curious. No need to answer if you prefer to keep that information private. I don't mean to pry.
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