Are we being aggressive enough? - Page 2

Carolyns · 04-07-2009, 02:02 PM

Hi Greg,

I am glad that you and your wife have arrived at this site but sorry that you had to join us. I am 53 but have been battling bc for 20 years now. I had bc first 20 years ago and we hit it "hard" with CAF. I lasted 10 years before I got bc in the other breast. The second time treatment was just a mastectomy and I lasted 7 years before I had mets - 3 1/2 years ago.

I have learned over time that there are so many new options and that the hitting it "hard" does not always mean using the chemos with the strongest side effects. Your wife has options and in my opinion making a choice based on many opinions / views from "top" experts in bc who treat many young women will make the choice easier. There is no one right choice or we would all pick it. This science is moving fast and some are more up to date than others on the latest treatments and findings. I have come to believe that the most harsh treatment (side effects wise) is not always the best medicine. That said, some times it is.

Best of luck to you and your wife.

Sincerely, Carolyn

AlaskaAngel · 04-08-2009, 10:41 AM

Medical treatment recommendations and consensus tend to be bureaucratically slow to change. As time has gone by and the population of breast cancer has changed, with far fewer patients being diagnosed at higher stages and the vast majority being diagnosed at earlier stages, is the focus on hitting it hard initially with the strongest treatments misplaced?

Do we know, for example, whether there might be a few more recurrences by using less toxic treatments initially for early stage bc, but much longer survival for those who do recur, since they would have more options left to try by not having used them up right off the bat?

Are we still treating bc as if it was all late stage to start with, when the vast majority of the patients now diagnosed don't fit that picture anymore?

AlaskaAngel

1.6 cm HER2+++, ER+, PR+ IDC, some DCIS, treated with CAFx6 and 1 3/4 years tamoxifen, no dose dense, no AI, no taxane, but 7 years of increased vitamin D, organic diet, exercise, no recurrence

CLTann · 04-08-2009, 07:30 PM

I reluctantly add my personal opinion to above well written replies. I am reluctant because my remarks are not in line with those who are eager to do the most for the patient.

People often felt that it is their moral and medical duty to give the harshest or most aggressive treatments to the patients so that no one would feel guilty if anything did not come out right. I don't consider most aggressive must be the best or most optimum treatment. The whole idea of cancer treatments is an evaluation of statistics. From histories of treatments thousands of patients have gone through, the medical panel came out with scientic based results to predict what would happen if the patient is given the same meds. However, the end results are often not predictable. The side effects of these treating methods are most likely certain. Sometimes, these side effects outweigh the benefits of the meds.

Very few doctors would oppose a patient's desire to get the harshest med/treatment, because they are trained to avoid lawsuits. However, you can always put your questions to the doctors in a way that do not infringe on their honest proposals without getting them into legal troubles.

Always remember that chemo kills fast dividing cancer cells, but it also kills healthy cells at a time that you really need them to fight cancer cells. Radiation kills cancer cells but also causes cancers. And, every person has a limit of cumulative dosage of radiation in the lifetime, there is no cure to reverse this process.

Jean · 04-08-2009, 10:36 PM

Greg,
First of all I am sorry that your wife was dx with bc.
She is lucky to have you checking and asking questions.
I think another opinon would not hurt.

I am a firm believer in we must work with what we have at this time....rather than not treat. These decsions are not easy. But maybe this may help. Grade 3 tumor is based on the micrioscopic appearance of cancer cells, pathologists commonly describe tumor grade by degrees of severity: Grade 1 tumors resemble normal cells, and tend to grow slowly, while grade 3 and 4 tumors tend to grow rapidly and spread faster than the tumors with a lower grade. So your wife at grade 3 is an important feature. While node negative is favorable it is not a guarantee. So you should consider all the issues that make up your wife's tumor..base your treatment decsions on the character of the tumor. Your wifes oncotype DX is high, but most women with Her2 will have a high test results. Most dr. using the test rule on having chemo after a score of 18 to 20...it varies from different dr.

Next your wife is er Positive which also serves as another means for the cancer to grow via estrogen. We know now that her 2 like to travel and is an aggressive bc....with the drug hercpetin we are seeing the stats changing.

I believe we will have to endure some more years before the stats are out to demonstate the benefits of early stage bc patients having treatments.

The problem we have is that the doctors just don't know which patients need the chemo/hercpetin. What we do know is that herceptin works and has changed the odds about this dx. by 50%.

It is a very difficult decsion to make on treatment and each person has to weigh the odds for themselves. Review your pathology report and certainly seek another opinion. But what ever you do please make a decision based on knowlege and not fear.

Please let us know how you and your wife are doing.
Sending you good wishes and prayers.
Jean

harrie · 04-09-2009, 12:07 AM

Hi Greg,
To me the toughest part of the journey is the time of decision making. My chemo tx (TCH) was so easy in comparison.
Your wife's path report is not a lot different then mine. I think a lot of good oncologists would say no chemo and a lot of good oncos would rec to go ahead and do it.
I know its tough, been there. Like you hear the good news that it was found early and it small, but the bad news......WHAT...CHEMO???? Its a roller coaster ride, I know it.
Anyways, I think it boils down to what are you most comfortable living with in the long run. For me it was doing going the all the way. I know my prognosis was good without the chemo and taking the AIs, but with the chemo, it gave me like a 5% added benefit and to me it was worth it. Maybe for another person it wouldn't be worth it.
I'm glad I did it. I feel like the side effects from the chemo was manageable and I feel totally recuperated from it. Back to normal and better.
Take care. Wish your wife well.
Maryanne

Debbie L. · 04-11-2009, 09:21 AM

Hi Greg, just wondering if you made the decision about which chemo regimen and if so, how you and your wife are feeling about it. Does she begin on Monday, still? Lots of good thoughts coming your way.

Love,
Debbie Laxague

Greg · 04-12-2009, 11:15 PM

Hi gang!

I want to thank you all again for providing us with all of the great information. After doing a ton of research and many heart to heart talks, my wife (she does have a name, it's Vickie!) decided to do the TH each week for 12 weeks (followed by rad, H for a year and hormonal therapy). Our Onc would prefer she do A/C before the TH or do the TCH, but Vickie feels the TH is what she can live with. It took a little work to convince our Onc, but she relented and agreed to do this treatment. I would prefer the TCH for her, but again its not me that has to sit in the infusion chair. There is a trial that began in October 2007 I think, that is looking at the TH regimen. It will be awhile before they have anything to report I imagine. So, we do the first infusion on Tuesday. We are both kind of dreading it but anxious to get started.

After looking at what some of you (and other brave souls on this board) have had to go through and seeing how amazingly upbeat and positive you are, I am simply in awe. God bless you all.

Jackie07 · 04-13-2009, 12:35 AM

Hi Greg and Vickie,

Good luck to you on Tuesday. And do come back to give us a report. I was having quite some reaction during my first chemo. So the next time they added whole bunch other meds to prevent me from throwing up. All the meds worked. I actually gained weight during chemo because I rested quite a bit.

BonnieR · 04-13-2009, 03:25 PM

Greg, it will be such a relief to get the first treatment behind you. And hopefully a bit anticlimatic. I mean that in the best possible way!
You and Vickie are the newest members of our band of "brave souls"! We're all just doing what we have to.
Keep the faith.

SoCalGal · 04-13-2009, 09:11 PM

Lani - Just looked back over this post and saw your question to me. I don't know which statistics you refer to but my reply was based upon my understanding of early stage node negative cancer. I was not quoting a statistic or study.

Lani · 04-13-2009, 10:17 PM

my comment had to do with the fact that your statistics seemed to perhaps relate to ALL node negative breast cancer irrespective of its her2 status lumped together, rather than for her2+ breast cancer

Greg · 04-14-2009, 07:31 PM

Hi again gang,

Well, we are no longer Chemo-virgins, well I guess I am, but not Vickie. All in all it went very well and echo'ed what many of you have said in that the anxiety was much worse than the reality, at least as far as the infusion went. It took a little longer than normal due to the herceptin push and the fact that they introduced it very slowly, we were there about 4 1/2 hours. The cancer care center here is like a lodge with fireplaces and all of that, and today it snowed and that made it seem even more "lodge-like". We even had a musician there playing an instrument I have never heard of called a Hang. Very relaxing. So now we are kind of sitting around waiting for the side effect storm that might start in 24 - 48 hours? Guess we'll batten down the hatches and ride it out. I would like to thank you all again for the help you have provided and at the same time apologize for spending so much time on the pity-potty. Our issues seem very minor compared to what some of you have and are going through. My admiration knows no bounds for you all and it is a tremendously uplifting experience to see how you are all bravely facing this dragon, but it is kind of sad here since you have to face it in the first place. I guess I'm glad you are all here to help each other (and us of course) but at the same time sad that you have to be here at all. Take care all.

Greg and Vickie

Jackie07 · 04-14-2009, 08:03 PM

Hi Greg and Vickie,

Congratulations! You all just crossed one big hurdle.

No issue is minor when it is your own issue. All issues need to be
taken care of. Since it is Vickie's first round, you all just have to wait and see what happens since everyone has different reactions to the chemo drugs. The 'loading dose' is always given slowly. Glad you all enjoyed the music and the wonderful setting there at the cancer center. You might want to create the same atmosphere at home...

'Don't be sad' - you want to pump up the endorphin in your brain and have 'happy' thoughts. It is wonderful that Greg is on the team. Now remember this is going to be a long distance race. Be prepared... We've all done it - you can, too. Cheers.

harrie · 04-15-2009, 12:28 AM

Well Greg, don't be surprise at all if it seems rather anticlimatical after the 24 - 48 hr wait!! After my first infusion I told everyone not to call me because I might be so out-of-it, I would hopefully just sleep it off! Well lo and behold...I felt....literally....hardly a dent!! Isn't that funny!! Nowadays the meds for the side effects are great!!
Anyways, can't speak for all the others, but for me you don't have to feel sad or bad. Physically, it took its toll, but I was able to ride it out and all is fine. Spiritually it gave me a lot of personal growth and rewards. I am sure it will be for you two too!
Maryanne

Jean · 04-15-2009, 01:51 AM

Hi Greg,
Glad that the first treatment is now behind you.
The unknown is the worst and it is never as bad as we have imagined. I understand the feeling of waiting for the big bangto occur. Hopefully you will be surprised to find a slight reaction or none at all. The new meds really do a wonderful job. So much so that you may consider to think you do not need them. DO NOT under any reason stop taking the meds. I made this silly mistake and it took a while to get hold again. Take the anit nauesa meds even if she feels 100%.

Remember to change her tooth brush often every 2 wks
to help avoid any mouth infections. No manicures either.

All good wishes,
Jean

jones7676 · 04-15-2009, 04:59 AM

You are a wonderful person to come here and get info.

Heres believin' you picked right and you will look forward to many years cancer free! Just stay positive and if anything seems amiss in the future make them check it right away - that is all I can offer!