TRIPLE POSITIVE GROUP
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shore...I am in the same boat as you. I have a very difficult time trying to look forward My docs have all said less 5% chance of recurrence in the breast and only 1 or so in the rest of the body. BUT.... lot of folks on here say that just by being triple positive, our odds o distant recurrence are 25%. That is very scary to me.
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My onc said that my risk of recurrence with no treatment other than surgery was 23%. Chemo and Herceptin cuts that in half, Tamoxifen cuts it by another 50%.
Rads reduced the local recurrence rate but I wasn't as concerned with local recurrence as I was with metastatic recurrence so I don't remember what numbers he gave me.
Based on the 23%, cut in half twice - my risk is statistically reduced to 5.75%0 -
shore there are people who have no nodes and no LVI that get a mets and there are people that have nodes and/or LVI and don't. They really don't fully understand how things work. You have to understand that even if the cancer did get into your body there is a very good chance that chemo/herceptin got it. Then of course there is the tamox/AIs just in case. There is also the situation where it didn't spread elsewhere and you didn't even need treatment other than surgery but they just don't know who doesn't or who will. They have to base it on stats.
In my case there was a 40% chance I didn't need any more treatment other than surgery. Not good odds for me. Doing chemo/herceptin/AIs reduce my recurrance to 14%. Not in the single digits but still the odds are in my favor.
Part of being a survivor is living. In life you don't know what will happen. I mean you could get hit by that proverbial bus. The only difference now is you know you need to watch closely for one peticular bus… but that doesn't mean it's going to hit you for sure. Actually it looks like your proverbial bus is parked.
My thought is I do what I need to do to prevent recurrence (exercise, keep weight down and take my estrogen sucking pill). Other than that I'm not going to worry about it until I have some sympton that lasts for more than 3-4 weeks. I don't worry about a sore throat being throat cancer… but if it lasted for more than 2 weeks you better believe I would get it checked out.
fluffqueen 25% recurrence might be for all stages (I -IIIC) combined. Don't pay too much attention to a radom statistic. You need to pay attention to your disease statistics.
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Well said lago!0
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Lago: You know always know the right things to say. What is LVI...I'll go see if I can find it.
Happy Holidays and Merry Christmas ladies.
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Thank you Lago - rationally I know you are so right & I will try to think of your words when i'm freaking out about statistics, chances etc. I really need to work on getting myself out if this dark &I obsessive place im in right now. Hopefully it'll get better once treatment ends & I start looking and feeling like myself.
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LVI = lympho vascular invasion - it means the pathologist saw some of the cancer cells crossing into lymph or vascular vessels I think.
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Well said lago. You are so good about sharing your strength and info with everyone. Thanks.
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Just stopping by to say hi to all you ladies and its been a while since I checked in here!
I'm sorry to see some of you still struggling through treatments but hang in there, I too thought it would never end but its amazing how quickly you forget once you're done and resume a normal life!!!:)
I'm six and a half years years out and still can't believe I've got this far considering I had three pos nodes .....sadly I too have lost friends with better diagnoses's than I had and not her2+, thats made me continue to live life to the full when I can and sadly as yet I know there are too many unanswered questions to find who will recurr from this so just live and enjoy life ladies and we too may be one of the lucky one's that herceptin worked a miracle for !!!!:)
Love
Tricia xx
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Shore chances are you will start to move out of this when you start to feel yourself again. Initially I did tons of research and spent quite a bit of time on this site (check out my ridiculous post count
) That's how I came to the place and understanding I am in now. You will find that the statistics and the "causes" of breast cancer change every year depending on what study comes out. It can drive you crazy so don't let it. If you find that it still is too much for you do seek help. There are many women that do. I know one personally. I was amazed with her transformation. She too is a triple positive but had several nodes involved (stage IIIA). She's doing great both physically and mentally. She's all smiles every time I see her.
And to the rest, thanks.
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Lymphovascular Invasion
Breast cancers have a blood supply like normal tissue and organs. Tumors also have lymphatic channels running through them, which serve as a circulatory system in the body for tissue fluid and proteins separate from the blood circulation. If cancer cells under the microscope appear to invade into the blood vessels or lymphatic channels of the tumor, the possibility that cancer cells have spread to the lymph nodes or other areas in the body increases. This is called lymphovascular invasion or LVI.
Source: linky
1 more thing about LVI. They used to think LVI was very important but over time they found that lymph node status was a more accurate indicator. This is why they talk more about nodes. Granted no LVI is better but they really have to look at everything else for the LVI.
couple more older linkies:
linky Susan Love
linky Science Daily (talks about how LVI might not be a prognostic influence on the low risk group)0 -
Thanks Lago! It always feels better to hear that...maybe someday it will start to sink in. Also, I think I typed 1 for a percent when I meant to put ten. Didn't want to be confusing.
I am moving into wedding week with my niece and I am planning to enjoy every minute of the next five days. I am going to try not to think about it, although I do have herceptin day on Tuesday. I have saved up all my drinking so I can have fun at the rehearsal dinner, reception and New Years Eve!0 -
Happy Holidays my dear sisters. I will soon turn to 40 years old in early Jan!
I had one very brief period after chemo but haven't had any since I started to take Tamoxifen in April 15, 2011. I remember TonLee's Gyn said she would not have period during Tamoxifen. but I saw some people do have period when they take Tam. I would like to know what other sisters' experience on this matter. My onc said he expected my period to be come within five years. I would appreciate if some sister can share how long it took to see period back when on Tam. I am definitely not looking forward to getting period back due to heavy bleeding so not sure what to do now. I am still weighing when to have hyster done but hoping to postpone for two or three more years.
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Meg,
They said I wouldn't have a period....but I DID!! And it was long and heavy....I'm meeting with OB in two weeks to determine a course of action....my left ovary is very sore right now....I dunno what's going on...
I've read 2/3 of women do NOT get a period on Tamox, but 1/3 of us do....my Onc said since my period was so heavy and long that an Ooph might be a good plan, to discuss it in two weeks with the OB.....we'll see....
Never ending!
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Hi TonLee,
Thanks for the update but sorry to know your period was long and heavy. Did you have similar period before Tamox or it is new? I understand what you mean by never ending. sometimes I hope I could get a break from surgeries.
I still cannot understand completely how Tamox could stop period. I am hoping I am in the chemo pause for ever since my period started when I was 9. but not so sure.
Take care!
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I don't post often as treatment is a distant memory for me now and life is great and very busy, but just wanted some opinions on my Onc recommendation of no hormone therapy for me.
I was dx at 40 did ACTH, went into chemo pause put on Arimidex, after 1 yr had to stop due to osteoporosis, still in menopause so no hormone therapy. May this year my period returned and has been regular since, saw Onc in Nov and he said my options were zoladex, Tamoxifen or do nothing, he ordered bloods and another dexa scan which showed no change in BMD despite zometa x 3 6 monthly. His final recommendation is NO hormone therapy as I will be 3 yrs post dx in Feb and the trials for zoladex were only for 2 yrs and I already had ovarian suppresion with chemo. He's not a big fan of Tamoxifen for her2 and thought it would only reduce my recurrence risk by 2-3 % and the SE outweighed benefit. He thinks the chemo and herceptin was the most important and the risk of recurrence is low at the 3 yr mark. My hormone receptors were ER 40% PR 20%, considering a second opinion although must admit I feel fantastic with estrogen back in my body. Just wondering what your Onc thought are on the importance of treating the hormone part of triple pos BC0 -
LouLou - My tumor was 90%ER+ and my onc is treating me with tamoxifen until he is sure that I will stay in chemopause at least 18 months since the end of chemo. Then I think he will consider switching me to femara. I will give femara a try but it's nice to know that I can fall back on the tam if it doesn't work out with femara. They definitely wanted me to do anti-estrogen therapy.0
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I am currently on tamoxifen after receiving TCH therapy. I had one slight period after my first chemo cycle the first of July, and I have not had one since. My onc advised that if I did not have one again in 12 months that she would recommend a sono of my uterus to my gyn to screen for buildup of endometrium as there is an increased risk of uterine and endometrial cancers with these drugs. She felt that it should return after the chemo leached out of my system.
Isn't it weird - and such a mess - that you can have the same treatment and get such different answers to the same question?
I just had to stop Herceptin due to a lowering of my EVF. I went to a cardiologist, he ran tests, and now he is not sure which way to go as I am so borderline. Continue Herceptin to reduce recurrence of the bc but that would further erode my cardiac function. If he is confused, what does he think I am? Now the docs have to "talk". With the holidays, now I have to wait until Jan. 6th for an answer. UGH!!!! No problem, I'll just hang out and wait.
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Hi ILBoysMom, I am in the same boat with the herceptin lowering my EF, went from 65 to 45. I skipped one herceptin treatment, but just resumed last Thursday despite there being no improvement in my EF. The cardiologist has me on a low dose beta blocker and ace inhibitor. She told me that it is very rare (less than 1%) to have a further decrease in EF. She said 99% of the time, it either improves or stays at the level it is now. I will be getting blood tests before herceptin to check Troponin and probNP. If they come out of normal levels, I guess they may change their mind. She told me I am walking arounfd with no problems at 45 and many people do, but if the cancer comes back, it will be trouble, so she thinks I should finish the herceptin as long as there is no further decline. I feel like I am between a rock and a hard place, but trust their advice. I was stage 3, that may make a difference as well.
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LouLou I know a read a long time ago (like before I started chemo so I wasn't very knowledgeable then) that in some HER2+ gals don't metabolize Tamox that well. I don't know how old the study was so this info is probably dated. I do remember reading it and was going to question my on if she recommended tamox for me. She didn't so the topic never came up.
It sounds to me that there is a real concern regarding your bones. You are young (10 years younger than me when I started this cancer crap). Your bones need last a long time. Your onc does seem to make sense but if you are uncomfortable I would recommend a 2nd opinion so you feel better.
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LouLou, I think recommendations are often based on individual estrogen receptor status. I was over 95% so an anti-estrogen is essential. I'd go so far as to say it was as important as chemo for me.
I probably posted this before...but I can't rember...and I do understand my Onc "dumbed it down" but here is how he explained Tamoxifen to me.
Our cells, specifically our cancer cells, have a hole, like a "key hole" for estrogen. Tamoxifen is identified as a low grade estrogen and fits into those holes. Because it is "low grade" the cancer cell can't "eat" it and survive...it needs stronger stuff..so often the cells will starve to death. As long as the low grade estrogen (Tamoxifen) fills those holes, real estrogen can't get in.
Ok. Sounds simple enough. But I don't find comfort in the explanation, or in the studies I read. I did, until I had a period. My problem with the whole explanation is that there is nothing that shows Tamoxifen gets to those cancer cells before my normal estrogen. And my "normal" estrogen is pretty potent stuff...always has been.
So I am going to see about an Ooph....last time I asked about it I was in chemopause, and the OB Onc said no way. No reason.
Now though...well, I'll see what he has to say...except I'm not seeing the same Dr. ~sigh~ I hate military health care. There is no continuity of care. It's one of the reasons my falling EF wasn't caught earlier....Except for my Onc and PS, I rarely see the same Dr twice...
Ok, whine over.
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TonLee - I will be interested to hear what you find out.0
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You'll know when I do Omaz! No secrets on this board.
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I hope everyone is having good holidays
I know for me this year was so much better. I'm not going through chemo OR herceptin treatments this December like I was last.Shore....I know it does sound crazy but your mind does move onto more positive thoughts. I was in a very dark place awhile back too. It does get better as your mind wraps around what you've been dealt with.
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I have been done with Herceptin for a month now. My nails are still very bad. Not like when I was on taxotere but they just dont grow at all. Whenever they show any sign of growing they break way down low. Anyone else having this problem even when you're done with Herceptin?
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I was deported today.
Wish I could say it was easy, in and out, blah blah blah....but it wasn't. Took 90 minutes and they didn't get me numb on the inside. Probably a fluke, but it was by FAR the most painful thing yet.
The Dr said there was "significant scar tissue" around the device and even into the catheter. Only had it for 12 months!! I can't imagine how bad it'd have been to get out if I waited 5 years. He said my scar tissue was so tough that if I waited 5 they'd have to done it in surgery with a chain saw. (I'm pretty sure he was joking...but I can tell you this...he was actually sweating at the end. SWEATING. Almost made me sweat too..lol except the room was -30....)
Ok I asked about getting a port put back in and this is what he said:
They can/do/will put it back on the left side where it was before. (In fact the patient before me was a BC re-port same side, same place)...
Said he does it all the time. The reason they "don't like" to do it (and will often choose the other side with other cancers that don't involve MX) is because of the scar tissue. It raises the odds of getting an infection or having complications with port operation the second time round. Which means it might require surgery and not an out patient wam bam thank you mam.
He said if I needed it again, it'd go right back in that spot, unless they opened up the old "pocket" and found too much scar tissue...then they'd create a "new" pocket an inch or two in whatever direction I chose. He told me that BEFORE he got in there for removal ... and before I cussed...a lot.
Afterward he said I'd get the port in the same area, but he'd recommend a new "pocket" about 1.5 inches left or right because my scar tissue was "vigorous." WTH does that mean?
If I had it to do all over again...I'd insist on triple numbing. The skin was numb, I didn't feel the sutures (dissolvable), but I felt EVERYTHING they did inside....and it HURT like a m... well, I've hit my cussing limit for the day. heh
They had to cut away layers of scar tissue that held the actual port hostage and was commandeering the underside of my skin...so lots of cut, scrape, cut, scrape....
At the end he said it was the hardest one he's ever removed, which made me ask...well how many have you done? To which he replied, hundreds, maybe thousands...I've done almost nothing else for 3 years.
My BS is gone for 6 months so I got a sub.
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Aww TonLee I am so sorry! I was so afraid to return and report as to what I thought was the worst experience thus far (excluding my actual surgeries) But dang, that was downright painful for me and I couldn't stay numb! Mine was 60 instead of 90 minutes though. I was so happy to walk out of there!
Congrats on being deported xxxx Welcome to the club!
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Oh that sounds horrible. I still have my port. Yikes, I thought I was looking forward to when I could get it out. Maybe not as much any more. Glad at least you can say it's done.
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Kay...
I think TonLee and I are in the minority. Many have come back and reported that the port removal wasn't too bad.
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Kay,
Nora's right. I think I draw the fluke card on some things...and this was one of them...almost everyone I've talked to on this side of the computer was in and out in about 20 minutes.
Thanks Nora...but whew, I am SORE....and bruised. lol I didn't even bruise GETTING it...of course I did get a collapsed lung....I kept telling the doc..better be careful with that scapel...I was glad to be done...but I'm thinking not as glad as he was to get rid of me!
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