Not any better off...Anyone care to vote?
This is not what I had expected... I expected that there would be text book... here's what you have... here's the protical for treating it... done... no decisions.. I made that already... masectomy or lumpectomy.. done... lumpectomy... I made that treatment decision... in two days... now he is supposed to do his part... here's what we do next... not well, we have a couple of different options... choose... because you are "directly smack in the middle of the treatment protical"... he even said and I quote, "you couln't be any greyer... you are definately grey"
Okay.. so how do I decide this one??? After all of this I asked him if he would be willing to request an ONCODX test.. and he said.. again quoting.. "yes,if you need that to help make your decision... but if it comes back high then you have to be willing to follow through.."
Let's see.. we could play innie minnie miney mo, maybe a round of hot potatoe, or how about bubble gum, bubble gum in a dish, rock paper scissors... Anyone care to take a vote...
UNBELIEVABLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!
~T
Comments
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clincal Trail
T, how about asking if you can participate in a clinical study? I am stage two and my medical oncologist said that more and more women are having chemo that don't need to.
So he entered me into a clinical study. I had the Oncdox test done and proved that I would not have to have chemo. Instead had rads, followed with ameridex for the next five years.
the onxdox test shows if you are ER/PR or HER2 negative or positive.
Also, compares your specific type of cancer and can tell you your level of reoccurance.
It also allows the oncologist to tailer your treatment to your specific type of cancer.
Not sure if this helps..
Julie0 -
My two cents worth........
Have the oncodx test. If you are HER2 positive I would definately do chemo. But you need these test to help you decide. I think you will feel better about your decision. You don't need any "what if's". On the other hand it can give you great peace of mind.
Jadie<30 -
Well T......
In my case, things were pretty clear....just surgery alone, with no chemo or rads & my chance at 10 yr. survival was pretty low.
Surgery, with chemo and rads and my 10 yr. chance of survival is 65-70%.
Easy decision.
I'm afraid that this is not going to help you much either....but if I had had a choice like yours when first diagnosed, I would have chosen the easiest, least invasive treatment.
NOW, knowing what I know and having determined my own strength...I would choose to have all of the treatment available to me to give me the very best chance. I don't want to leave any stone unturned.
I know that whatever you decide to do will be the best thing for YOU.
Hugs,
CR0 -
I know that it is so hard
I know that it is so hard when nothing is black or white, just grey. The oncotype test could help you decide but it could just be more grey. I did the oncotype test and entered the clinical trial. At first I hoped that I would have a low number and know that I didn't need chemo or at least if it was a high number I would know I needed chemo. But I fell into the grey area. I think my number was 22. But that put me in the group that they needed for the trial. Half do chemo, rads and Arimidex and half rads and Arimidex only. You are put into the group randomly. I was randomize for rads and Arimidex only. At first I hemmed and hawed about doing this. I thought maybe I should just do the chemo but then I thought no I will do the trial. I will be followed closely and if I have a recurrence I can do chemo then. My number in the area where they don't know how effective doing chemo even is and I would have to decide. This is actually easier. I have a hard time ordering dinner at a restaurant so making these choices is so involved for me. I have to research and read and then research more and then choose and then unchoose. But then I realized that some have chemo and still have recurrences or spread and some don't and have recurrences or spread and some never have another cancer. So I decided to stop making worry my life's work and make life my life's work. I don't worry about the cancer (most of the time) because then I let it rob me of today. How many today's am I willing to give to this disease? None. So for now I am cancer free, happy and if or when it comes back then I will deal with it.
I hope that you will be able to make your decision and then move forward because every forward movement brings you further from this disease.
Stef0 -
T
I am truly sorry for the ordeal you are going through. I hope that my appt on Friday will turn out better. I would definately find out the HER status and such. Let us know how it goes.
Sherry0 -
OH..Taleena
I am so sorry to here of your deleamna (?) Waiting is hard... but that kind of decision has got to be hell! My only suggestion would be to listen to your heart. I will pray for your decision to be the "right" one.
Take Care, God Bless and gentle hugs,
Mike0 -
TThe1percen said:OH..Taleena
I am so sorry to here of your deleamna (?) Waiting is hard... but that kind of decision has got to be hell! My only suggestion would be to listen to your heart. I will pray for your decision to be the "right" one.
Take Care, God Bless and gentle hugs,
Mike
You have to find out if you are her2. I am surprised that they don't know this information. You will need every bit of information before you decided. Maybe you should consider a second ONC and see what they have to say. No point in going through all this treatment if you don't have to.
Friendship0 -
Tough decision...
Taleena, sounds like you and I had a similar day!! I met with my surgeon, a geneticist, a clinical trial advocate, and a counsler today. Boy, what a long day. So many things to decide, isn't there?
Here is what I came up with.....I am doing the Braca gene test for my daughter, sister's, mother, and to see if I will have my ovaries removed if I test positive(had hystorectomy 4 years ago).
I have decided that I will do the oncotypeDX clinical trial for these reasons....I will know my score prior to me telling them my decision on the 7th, But, if it is low I won't need chemo, if it is high I will need chemo, and if I fall in between then I wouldn't know which way to go, so I rather the study decide for me.
Besides, I will be watched so closely for 20 years I will probably know way sooner if I had cancer again before they could ever find it here where I live. It sounds like a win/win situation to me.
My oncologist will give her advice before I sign the papers. If she feels strongly that I should go with chemo and I am put into the group that will not get it, I can always opt out of the study at any time. Genomic Labs will cover the cost of the test for you if you are in the study.
If this is something you think you may be interested in, I would call your onco right away and ask about it. It is called the PACCT-1 clinical trial. Also know as the TAILORx Trial. Only 75 people were being taken from AGH, so I was glad to get asked. Good luck with your decision. I know your head is probably spinning right now and this is the last thing you needed. Hang in there, but remember....I'm gaining on you!!!
Pammy 0 -
T: Tough decision to make
T: Tough decision to make and most certainly a complicated one. But whether you are Her2 + or - doesn't matter in your decision to go through with chemo. You have to listen to your heart and do whatever will give you the best survival rate and lowest recurrence rate. For me it was easy because it was more black and white and I'm sorry that it wasn't the same for you. I went through 8 rounds of chemo, tough as it was while going through it, I'm now glad I did. Hopefully, I won't have a recurrence, but if I do I will do anything to give me another fighting chance. Sorry we can't give you a yes do it or no don't do it. Ultimately, the decision is yours. Maybe, you should go for a second opinion before you make your decision. Whatever you decide, we'll be here to support you all the way. Hugs, Lili0 -
I would do anything, go thru
I would do anything, go thru any treatment to save my life and to stop a chance of a recurrence and prolong my life. If I was on the grey line with chemo, I would do the chemo. If I was on the grey line with rads, I would do rads too. If additional surgery was needed, I would do it. I didn't have to make those decisions thankfully, but, I would never not do a treatment. Why would you? I want to see my children and grandchildren. I want to grow old with my husband and retire. I wouldn't want the cancer to come back and then think, if I only would have gone further with the treatment. I don't like uncertainty. I want to know I have done everything to stop it. Good luck!0 -
T,
Wow,that would be tough.
I guess my cancer was common enough that both my oncs said this is what we want to do,and I trusted them enough and still do that I just did what they said.
To have to make all those decisions yourself,I couldn't imagine what you must be going through.0 -
Taleena, I am sorry that yououtdoorgirl said:T,
Wow,that would be tough.
I guess my cancer was common enough that both my oncs said this is what we want to do,and I trusted them enough and still do that I just did what they said.
To have to make all those decisions yourself,I couldn't imagine what you must be going through.
Taleena, I am sorry that you and your husband have to make this decision. But, I did do and would do whatever it takes to make me feel that I have done anything and everything to fight bc. If I was in the gray area, I would do whatever my oncologist and radiation oncologist wanted me to do. If they said chemo or chemo and rads, I would do it. You will get thru it. Look at all of the brave women here that have. Just do what you want, but, do what will prolong your life and hopefully, stop any recurrence. I wish you all of the luck!0 -
Frustrating for sure
Hi T my first cancer dx I had the choice of being treated as a stage 1 or 2 as I was border line so I opted for a lighter gentler kinder stage 2 treatment and 6 weeks of rads (my hair only thinned so I thought it was a good thing) and I did the tamoxifen. As it turned out 6 months after treatment the cancer mastastisized in my chest wall and sentinel node and I was then a stage 4. I then needed to have 18 more harsh chemos and ten more weeks of rads. Looking back I wish I had taken the more harsh treatment the first go round. This is just my situation, but as a result o fit I will always take chemo as it is one more thing I can do to keep the cancer at bay. We will be there for you whatever you decide, your situation is unique and only you can decide what is right for you.
A Multitude Of Hugs and Support coming your way!!!
RE0 -
I did ask what hislynn1950 said:Eenie, meenie, meinie, mo
Oh Taleena - I know you have to follow your heart, but from my point of view, it's worth it to do anything to prevent recurrence. Did you ask your onc what he or she would do if he or she had to make the decision? All my best to you. LYnn
I did ask what his recommendation was and asked him what he would do... I asked at least four times, and everytime he side stepped the answer never giving me anything definitive... He says the good things are 1) ER & PR positive... they ran two test for HER2, the one came back positive, the FISH came back negative... go figure... I had to ask for the OncotypeDX.. he is doing that reluctantly, isn't doing anyother tests, no MRI's, no chest xrays.. nodda... I just don't feel comfortable... I just wish he would have answered the question.
So, I have decided to go to the Kansas University Medical Center to the Cancer Center that they have there... I have another appointment with an oncologist there on July 7th... I think I'll feel more comfortable with a Onco there.
Thanks for all of your support.. I hope you all know how much I appreciate it.
Hugs,
~T0 -
I wish you good luck withtaleena said:I did ask what his
I did ask what his recommendation was and asked him what he would do... I asked at least four times, and everytime he side stepped the answer never giving me anything definitive... He says the good things are 1) ER & PR positive... they ran two test for HER2, the one came back positive, the FISH came back negative... go figure... I had to ask for the OncotypeDX.. he is doing that reluctantly, isn't doing anyother tests, no MRI's, no chest xrays.. nodda... I just don't feel comfortable... I just wish he would have answered the question.
So, I have decided to go to the Kansas University Medical Center to the Cancer Center that they have there... I have another appointment with an oncologist there on July 7th... I think I'll feel more comfortable with a Onco there.
Thanks for all of your support.. I hope you all know how much I appreciate it.
Hugs,
~T
I wish you good luck with your choice Taleena, whatever that might be. I also have to agree with what RE wrote. I think one should do everything and anything possible to prevent a recurrence and to save your life. If my oncologists said I was in the grey part, I would take chemo. I would rather be safe than sorry, later on down the road. Chemo is no fun, but, it is so much easier now with all of the medications.
Getting a 2nd opinion, I hope, will help in your decision.0 -
OK, missy, you cheated!!taleena said:I did ask what his
I did ask what his recommendation was and asked him what he would do... I asked at least four times, and everytime he side stepped the answer never giving me anything definitive... He says the good things are 1) ER & PR positive... they ran two test for HER2, the one came back positive, the FISH came back negative... go figure... I had to ask for the OncotypeDX.. he is doing that reluctantly, isn't doing anyother tests, no MRI's, no chest xrays.. nodda... I just don't feel comfortable... I just wish he would have answered the question.
So, I have decided to go to the Kansas University Medical Center to the Cancer Center that they have there... I have another appointment with an oncologist there on July 7th... I think I'll feel more comfortable with a Onco there.
Thanks for all of your support.. I hope you all know how much I appreciate it.
Hugs,
~T
You were suppose to be one day (one step) ahead of me, remember? Now we will be seeing our Oncologist on the same day!! I think this contitutes a penalty in the game!!! What's up with that? (Te he!!!!!!)
On a more serious note, I think you are doing the right thing with a second opinion. I would hope for SOME feedback to help you decide one way or the other. After all, it is called guiding your patient. That is why they went to Med school. They are the docs and we are the ones that value their advice. They don't have to make the decision for us, but at least lean one way or the other, com'on!!
"I'm sorry, your in the middle. So I can't help you here. Get back to me when you finish 12 years of Med school and know what to do."
I will be anxiously waiting to hear what the other onco has to say.
By the way.....can't you bump up your appt. to the 6th? I really do not want to be gaining on you here. I want you to go first because I am not that brave!! (ha,ha) Pammy 0 -
Seeing....taleena said:I did ask what his
I did ask what his recommendation was and asked him what he would do... I asked at least four times, and everytime he side stepped the answer never giving me anything definitive... He says the good things are 1) ER & PR positive... they ran two test for HER2, the one came back positive, the FISH came back negative... go figure... I had to ask for the OncotypeDX.. he is doing that reluctantly, isn't doing anyother tests, no MRI's, no chest xrays.. nodda... I just don't feel comfortable... I just wish he would have answered the question.
So, I have decided to go to the Kansas University Medical Center to the Cancer Center that they have there... I have another appointment with an oncologist there on July 7th... I think I'll feel more comfortable with a Onco there.
Thanks for all of your support.. I hope you all know how much I appreciate it.
Hugs,
~T
Seeing another doctor and getting another opinion is an excellent idea T. Especially if you first doc did not want to commit to any kind of real plan.
I'm glad that you are doing this....
CR0 -
Do you have my oncolgist?taleena said:I did ask what his
I did ask what his recommendation was and asked him what he would do... I asked at least four times, and everytime he side stepped the answer never giving me anything definitive... He says the good things are 1) ER & PR positive... they ran two test for HER2, the one came back positive, the FISH came back negative... go figure... I had to ask for the OncotypeDX.. he is doing that reluctantly, isn't doing anyother tests, no MRI's, no chest xrays.. nodda... I just don't feel comfortable... I just wish he would have answered the question.
So, I have decided to go to the Kansas University Medical Center to the Cancer Center that they have there... I have another appointment with an oncologist there on July 7th... I think I'll feel more comfortable with a Onco there.
Thanks for all of your support.. I hope you all know how much I appreciate it.
Hugs,
~T
T, after reading your response, I wonder if you have the same onc as I.
doesn't seem to care about what I say or do. because of his lack of caring about what I have to say, or even the remote interest, I have lymphdema now. I have been seriously think about going to the James Cancer Center at Ohio State Hospital. It's a long haul, but maybe I would be taken more serious.
I hope and pray that things will get better for you at new oncologist.
Julie0 -
I am sorry you have to makejgridley said:Do you have my oncolgist?
T, after reading your response, I wonder if you have the same onc as I.
doesn't seem to care about what I say or do. because of his lack of caring about what I have to say, or even the remote interest, I have lymphdema now. I have been seriously think about going to the James Cancer Center at Ohio State Hospital. It's a long haul, but maybe I would be taken more serious.
I hope and pray that things will get better for you at new oncologist.
Julie
I am sorry you have to make such a hard decision in such a confusing time. Wish I could be of more help, you have been so positive for everyone else. I suggest getting a second opinion, you may be in the middle but maybe a different doc can be of more help decision wise with stats of chemo or no chemo for people on your position. Maybe a different doc will see you more on one side of the road than the other.
Thinking of you
Kim0
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