TRIPLE POSITIVE GROUP
Comments
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Laolson don't get all caught up in stage. We all did in the begining. First of all they can't stage your mom till she has had the surgery.They need to know if her lymph nodes are clear before they can stage.
2nd since she is HER2+ there is a good chance she will get chemo/herceptin although some of that might depend on your mom's overall health. Sometimes "triple positives" don't get herceptin/chemo but I think that's only if the tumor is less than 1cm. I'm finding triple postives stage 1-3 seem to get very similar treatment.
HER2+ typically is grade 3 but as you can see not always.
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I understand, but I can't help but be scared for my Mom. I just lost my Dad a year and half ago to lung cancer, and I really don't want to go through this again so soon after loosing my Dad. I was just getting to a good place, before this happened. I am glad you are have much success on your treatments. Are you considered pre-menopausal? Does that make a difference in the aggressiveness of the cancer?
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Breast cancer is very treatable, at all stages. Lung cancer as you know usually is caught very late and therefore can be tougher to treat.
I was peri (age 49 at diagnosis). It only matters when it comes to what hormone therapy you are given. Post menopausal women usually get an aromatase inhibitor premenopasual usually get Tamoxifen. Postmeno women can also take Tamoxifen but the aromatase inhibitors are prefered for a numer of reasons. In my case I was so close to menopause given my age and family history my onc felt that my cycles would not come back so I went on an aromatase inhibitors but was monitored intially to make sure my hormone levels didn't rise.
EDIT
There are many guns your mom has for treatment: surgery, chemo, Herceptin, radiation, horomone therapy. This is a good thing. She may get all or just some. I didn't have radiation.0 -
I am 45, premenopausal but am in chemopause now! I work for a group of Pulmonary Critical Care physicians and we diagnose lung cancer every day. Lago is correct that lung cancer is way tougher to treat than breast cancer. There are alot of treatment options available. Please don't worry too much. Find an oncologist you all like and feel very comfortable with and formulate a plan that they feel is best for her. She can do this...and she obviously will have support from her family, which is great! We are all in the same boat here so please come back and ask anything you need to. This is probably a terribly overwhelming time, but we have all experienced it and this site is full of ladies with great wisdom and compassion. HUGS
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Thank you Lago for trying to calm my nerves. I know my Mom will be in good hands and has many options. It just sux that she has to go through it, especially after loosing my Dad. I pray she is ok.
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Thanks Kelly. I really could use a hug. I guess at some point you start to move on from the shock of the diagnosis and take care of business. With my Dad, it was just so sudden that by the time I came out of shock, he was already dying. He literally died within 5 weeks from diagnosis. The only symptom he had was persistent back pain.
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I'm sending all my hugs your way.>>>>{{{{ }}}} I am so sorry about your Dad but please keep your chin up and stay strong for Mom. This will be a different experience.
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She'll get through it. We all did. I finished chemo over a year ago, Herceptin this past September. I'm just on hormone therapy and doing just fine.
Right now your mom is more scared then you are. This is the scariest time. It does get better once you know your plan and treatment has started. The unknown is horrible.
That dark cloud went away after I had surgery (my first treatment, although some do get chemo first). I don't know if they limit posts to new people anymore but if they do you can PM (personal message) anyone here by just clicking on their name. You'll see"Send member a Private Message"on the left.
Yes I have read lung cancer is brutal and works quickly like that. Sorry you lost your dad.
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laolson18, hugs coming from me to you and your Mom as well! The initial diagnosis and first few weeks afterwards are the toughest. You are overwhelmed with emotion and shock and learning a whole new set of medical information...it does get better with time, and you will have time to absorb it all and wrap your head around it. Just know what you are going through is normal but it WILL get better!!!0
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laolson18, hugs from me as well to you and your mom. As everyone else has already said, it does get better once you start treatment and know what you will be doing. And as others have said, yes a lot of oncs use pet or CT scans routinely just to make sure the cancer hasn't spread. There is every reason to think that your mom's has not. Hang in there.
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Laoson 18, sorry about your dad, but bc is a different game. With Hercrptin, a very different one, in a good way. I know this is har d for you, my kids say the same. Hang in there
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Hi ladies,
I was reading through the posts and saw that someone had to stop herceptin because of the EF. Has anyone tried coenzyme Q-10? It is apparently safe to take and does help with heart function. From what I read it can repair heart damage as well.
Is there anyone on this thread who was dx around 2008 and has not recurred? Too many pages to read thru all of this thread!
laolson18 - my heart goes out to you! This forum is a good place to come when you need some support.
tuckertwo
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Tuckertwo...I take coQ-10 every day. My onc told me to take it, however I was already using it. I have to have a kidney stone blown up in ten days and my info sheet says to stop all vitamins. Not sure I am going to do that. I think I might keep taking the coq10, vitamin c and biotin. Trying to keep the hair and nails ok.
laolson...I beg my onc for a pet scan every time I see him. He doesn't believe in doing a lot of tests. I think I am wearing him down a little though. My new plan of action is to get him to commit to the tumor market and ctc bloodwork at my last herceptin on March 20, and then get him to agree that at my two year cancerversary (I am at one right now), he will do the pet scan to ease my mind. I am going to hope that the fact I have done chemo and herceptin will keep things ok for a while.
When you meet with potential oncologists, if your mom is healthy enough to swing chemo, ask them about the possibility of using taxol wth the herceptin. It is easier to tolerate, especially if you get it weekly for twelve weeks. That is what I have. It is not standard protocol, but is considered off label. It is used that way a lot in europe. Your mom may also be able to just get herceptin. I work at Macy's part-time, and had a lady in the other day that was 83, having a recurrence after three years,and they were just giving her herceptin. It was working she said.
By the way, to everyone, I have been back at Macy's about twelve hours a week for a month now, and I swear that I must have "Breast Cancer" glowing above my head because I can't begin to tell you the number of people who start telling me they have/had it, etc without any kind of instigation from me. The 83 year old lady really freaked me out because even though it was in her lymph nodes three years ago, now she is stage iv. I guess if I make it to 83 I will be ok with that maybe. But she was just diagnosed at 80.0 -
Fluffqueen there are people that are going to get mets… some that don't even have node invasion. Don't let these folks freak you out. There are so many more that don't get mets. Remember to be a survivor you need to live your life, not worry about it. I don't worry about possibly getting a stroke or heart attack so why should I worry about cancer coming back? I do what I must to keep healthy and enjoy my life.
Also you know those scans won't show anything unless there is a lesion, and that lesion has to be a decent size. I'm hoping my onc will stop scanning my liver. So far there is nothing there and I don't have symptoms. I feel this is just wasting money and one of the reasons why insurance doesn't want cover you once you been diagnosed with breast cancer. Granted I don't feel these scans are that reliable. Look how big my tumor had to be before the mammo picked it up. Lots of false positives too.
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fluffqueen, you know I worry a lot, too. However, I've really been trying hard to control the worry monster, b/c it so easily can take over and ruin my enjoyment of my PRESENT life. I don't want cancer to steal my TODAY's b/c I am worrying about tomorrow. Worrying about the possible results of a test isn't going to change the outcome of my cancer. Either it is going to come back, or it isn't. It's either 0%, or 100%, either way. Worrying is only ruining the time I DO have now.
That all sounds good on paper, but getting this to be a mantra in my head and heart is a HUGE challenge. The innocence we all had about the security of our health has been shaken. We have a new "normal" and have to develop new strategies for dealing with the "what if's". I don't know if the above thoughts will help or not, but I'm writing them down and every time I have a pang of fear, I'm going to read it. It's my own personal attempt at re-wiring my worry thought process and trying to get some control over it. Kind of like how they tell you to wear a rubber band around your wrist and snap it every time a bad thought comes in...except I'm trying to replace the bad thought with a more constructive one. I don't know if this is going to work, but I already feel better with just trying this outlook for a day now. Sharing it in case it helps you or anyone else.
By the way, I write in a journal when I get really upset/overwhelmed, and this is how I came to the above conclusions. It is very therapeutic for me.
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I must say that as much as I worry about it, I havent ,et it control my llife. I do have a pretty good time a lot. However, with that said, I have also been known to come up with ideas for fun things that in the back of my head I know will make a good memory for someone. Lol. Isnt that pathetic?
For me it is fear of the unknown. I hate surprise parties too. I never believed it when my kids called me a control freak, as I am pretty laid back....as long as I have control apparently.
I have starting pitting together a manual in some kind of checklist form that is a compilation of things we need to know/buy/ask/do from diagnosis to the end. I wouldnt ay it is therapeutic, but interesting to see the level of control and involement in my own treatment that I did maintain.
I also feel like it might help to save time for others. I feel my experience was smoother because of the amount of prep work I did, but I spent hours looking all over and doing eresearch, gleaning little things from a million places. I am trying to put them into one so someone could open to a page on surgery prep and have a solid checklist onwhat to do buy by type, etc. See i am a control freak!
Lago....made a reservation at the Dana for friday through sunday over st. Pats weekend. Will you be around? We will be with friends , so I want to make sure I set soem time. friay would probably be the best.0 -
Yes I will be here. Friday sounds good I think… when's St. Pats day? I can meet you at the Dana. Just remind me.
I don't go down to the loop when St. Pats parade is celebrated. Too crazy for me
BTW you are too controlling. That's your problem. Are you sure you're not from New England
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Hey, hey....nothing wrong with being from New England. I live in Mass and love it here. I am originally from Jersey.
Thank you all for your continued support. It really has made a difference in my outlook for my Mom. I know she is going to be ok. Plus there has already been two many positives happening already to out way any negative thought. From the beginning, when my Mom told me last Sunday, only positive things have occured. Monday morning I spoke with her Patholigist and she tried to put my worries at ease and said that my Mom would be ok. She said she had seen this enough times and wouldn't say anything if she didn't think that was the case. Then I call my friend Leigh who just had a BMX and ask her for the name of her doctor. I was lucky to get a hold of her, b/c she was scheduled to go back in for surgery the next day for her reconstruction. I call the doctor next and they were able to see her this past Friday. She had a 11:15am apt, and from just speaking with my Mom before, she had thought the apt was at 10:30am and was there way before that. The doctor had no problem seeing her and when they got out of the office it was standing room only.
Originally, my mom had an apt scheduled with a breast surgeon affiliated with her local community hospital and they were able to squeeze her in until next Friday. My Mom plans to cancel this apt. I am just going to stay in the positive zone!
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Laolson I'm from MA. My birth certificate even states I was born in Boston. My entire family is a bunch of controlling New Englanders that always think they are right. (But we know I'm the only one that is right
) I lived in S. Jersey for a year (outside of Phili) in 1991. I have family just outside of Phili. Sounds like things are going to be OK. With this disease there is always a glass 1/2 full (or glass 1/2 empty). Be sure to look at the full side and you'll both get through this a lot easier.
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dancetrancer - your post rang so true for me, i know what i am supposed to think/do but i have a difficult time getting my mind to cooperate. Its tough for sure. I had a long conversation with a good friend yesterday and she said to me "you know you have to get to that place" . Thats all good and fine but getting there is another issue
fluff - re the 83yr old w the recurrance. I was speaking w my onc this wk and we were talking about recurrance and she said they actually see higher mortality amongst much older patients - why? usually they are undiagnosed/undertreated b/c of age. For example here in canada they stop doing mammos at 70. I just thought your story was interesting in light of my recent conversation with her
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Question- is it a good thing if the doctor says Excellent when he did not feel anything when doing my Mom's breast exam and under her arm? I am assuming he is feeling for the swollen lymph nodes? Is that another good sign?
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That sounds like an excellent sign. My BS when feeling under my arms came right out and told me he didn't feel any swollen lymph nodes. It's no guarantee they are clear but probably 70% chance they are (at least that's what he told me). Granted my BS was very worried about micromets with me because my tumor was so big… but I was all clear.
I would think they would want to do a sentinel node biopsy on your mom. This removes typically 1-2 nodes but it can be more. I had that done on my other side and 4 nodes lit up so they had to remove 4. Removing fewer nodes reduces the risk of lymphedema.
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Do they do the sentinel node biopsy at the time of surgery? Will it light up on the Pet scan? And what exactly are micromets? Does this mean Stage IV automaticaly or just that it is getting ready to spread to a distant site?
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My sentinel was done at the time of surgery. Sometimes these can light up on the MRI or Pet scan. Micromets (microscopic) will not.That's why you need to wait for the pathology from surgery to be sure.
Stage IV means that it has metastasized to other organs other than the breast or the nodes, also called distant metastasis at the time of diagnosis. Spreading to the nodes is local metastasis. If nodes are invaded there is a chance that it might have spread but not definitive. Also remember that just because it might have spread treatment may kill it. This is why we do chemo, herceptin and hormone therapy. Once you'be been staged you will always stay that stage even if you get distant mets in the future.
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Does it always spread to the nodes first? Or can the cancer just bypass the nodes and move on to distant places?
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It can spread other ways and in some cases happens more often with HER2+ than other types but that doesn't mean it will. They don't have answers for everything. Still lots of unknowns. Typically though the nodes are the first place it spreads. linky (this is a little dated. Treatment for HER2+ has changed a little bit in terms of other types of chemo)
The fewer nodes and smaller the tumor the better odds you mom has. Seriously breast cancer is the most treatable cancer. You have to remember that. BTW I'm meeting up with a woman from this site next week. We met a year ago when she was in town. She is a 21 year survivor. After 6 years she got mets… 15 years later she's still being treated, working and traveling. (I think in her case they didn't have her on hormone therapy. If she had been on it she might have been cured).
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What are the micromets?
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lago,
I'm not sure that is true about staging? Staging can change if the disease progresses. One can go from stage 1 to 4. That's my understanding, anyway. There are lots of women on this board who have gone from one stage to another.
tucker
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Can I jump in?
micromets are microscopic cancer cells that have travelled to another part of the body via lymph or blood vessels.
tucker
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Tucker, I've seen many women change their stage on the board as well. However, I've heard Beesie say that officially your stage never changes from the stage that is set at time of initial diagnosis. If you get mets, she says it is officially becomes, say, Stage 1 with mets to lungs, etc., etc.
laolson, I believe micromets is when cancer is found to spread to the lymph nodes that is microscopic in nature, ie. it can't be seen on US or with the naked eye, but a few cancer cells can be seen under the microscope after surgery.
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