choice not to do chemo, etc...

[Snufi]

Have any of you decided not to do chemo oe herceptin am torn at this point, what to do. The nodes three of them were negative, margins clear and no lymphatic invasion. How else could it have gotten out? What happens if there really isnt any cancer cells lef in my body, and I do the chemo and herceptin. Isn't this risky to do this to my body? Any thoughts greatly appreciated.

Snufi

[Mary Anne in TX]

Hey Snufi! While my situation was different from yours, I will share my choice of doing chemo and herceptin. I decided that I wanted to do everything "upfront" that I could; so that I might not have to do battle again for a long time.
I wouldn't pass up herceptin without at least 1 or 2 other onc's opinions. It's an easy drug to do and recommended by most. But I also know that we have to make our own choices. Each one is different. Good luck on your decision. ma

[Jean]

Hi and I am sorry that you have been dx. with bc.
You mention that you had negative nodes, while that is a favorable dx., that alone is not an indication that cells have not gotten out. There are many with neg. nodes who have had spread of disease. (sorry to share that sad bit of news) but you must realize that many years ago onc. would then use that alone as a favorable decsion for treatment, that is no longer the case. Consider the fact that in a small tumor such as I had a 6MM...half the size of pea...would have millions of cells, these tiny micro cells could pass ....one dr. at John Hopkins said it this way...consider the lymph node like the catch basket in your sink drain...and you cleaning a tomato and some of the tiny seeds of the tomato drop into the sink - will the basket catch all the seeds?

Next, it is now certain that all women who are dx. with HER2 bc should be treated with Herceptin. Maybe in the years to come we will not need the chemo...but for now we only know that chemo/combined with the herceptin offers the best treatment....not my words, those of Dr. Slamon, also said by him long before the FDA approved Herceptin for those of us who were early stagers..."All women who are Her2 should have herceptin. Her2 likes to travel and it does so fast as it is aggressive. I don't know if you are er positive or neg. that would matter also. If you are er positive at least you will be able to add another bullet in your treatment against your bc.

These are not easy decisons. Maybe you could add more information on your signature and other members will be able to add to this post.

I wish you the very best in your decisons. Each of us has to come to terms with our treatments decsions, not based on fear but on knowledge. I can only add that many early stage women fought very hard to get herceptin prior to FDA approval. Has your onc. sat down with you and explained all the factors? Are you afraid of chemo for the side effects? What are you using as a guide for your final decision?

Once again, you have come to the very best source of information ....wishing you all the best.
Kind Regards,
jean
FOOTNOTE;
HER2-positive breast cancers tend to be more aggressive than other types of breast cancer. They're also less responsive to hormone treatment.

When I read this...after being told I did not require chemo/herceptin prior to FDA approval Sinufi..I was told by my dr. that the AI was the best treatment for me..due to being ER positive..after I did some additional research I could not agree with their findings. It is our job to stay on top and ahead of cutting edge information for the best possible treatment.

[AlaskaAngel]

Each of our cancers may respond differently to treatment, sometimes due to differences in age and menopausal status, and sometimes due to many other variations.

I didn't like losing my hair, as it was very long and thick. But the worst part by far during treatment was the extreme vomiting, even with the antinausea drugs I was given. However, neither of those things stopped me from completing 6 rounds of CAF in 2002, or from having weeks of radiation.

The newer treatments TCH , TH, or AC+TH are somewhat different in that the taxane (the "T") generally causes prolonged neuropathies instead of causing the intense nausea and vomiting that I had.

But if I had it to do over, I would make a much different choice today. Why?

1. Chemotherapy damaged my immune system. Six years later my blood counts, which were above the middle range of normal prior to treatment, are still below normal. I can't go back and change that once it was done, to be able to take better advantage of less toxic choices like the vaccines that are showing such great promise.

2. I think it is extremely short-sighted that very toxic therapies are still being used for those who have a diagnosis that is known to respond well to ovarian ablation and hormonal therapies -- especially those who also may benefit from the use of a monoclonal antibody.

3. Ask your medical providers what your recurrence likelihood is, but not for 10 years. Ask what it is for FIVE years. The graphs showing the effectiveness of chemotherapy show a sharp drop around the fifth year; if your risk is considered low for as long as TEN years, does it make sense to do preventative therapy that works primarily just for the first five years????

Also, in just the first 5 years after I was treated, these are some of the options people have now that I did not have:

a monoclonal antibody specific to HER2 positive patients, trastuzumab

lapatinib, which targets not only HER2 but HER1 if that happens to be part of your cancer

the aromatase inhibitors for some types of cancer, Arimidex (anastrozole), Femara (letrozole), and Aromasin (exemestane).

Clinical trials are being done showing that ovarian ablation and hormonal treatment and a monoclonal antibody may be equal to or more effective than chemotherapy if the tumor has positive hormone receptors and is HER2 positive.

There was no such test as any of the Oncotype Dx, Mammaprint, etc. to try to identify what characteristics a cancer has, so that more precise treatment can be given. Once you have had a type of chemotherapy, whether or not it works on your particular cancer, you can't go back and undo the damage from it to your immune system and you have already put in a lot of time, money, and energy dealing with the effects of chemotherapy to boot. Newer tests are in development. If as a stage I you contrast your risk for recurrence in the first 5 years, do you think there will be 1) fewer, 2) as many, or 3) or more such dramatic advances in the next 5 years for you to take advantage of before any recurrence would be at all likely?

Mine is just one opinion of many. I have not had recurrence. I have never had a monoclonal antibody. I have never had dose-dense treatment. I have never had a taxane. I did tamoxifen briefly (less than 2 years) but I am not even on hormonal therapy (I did 2 days of Arimidex).

Yes, it is possible that the CAF treatment that I had may have made a difference, if I happened to be among the 1/3 of HER2's who benfit from Adriamycin for TOPOIIa. I don't know whether my chemotherapy hit the target or if I never needed it at all.

4. Although medical providers either never mention it at all or are not straightforward with newly diagnosed patients, any treatment currently used will likely change your sexual response both mentally and physiologically. When providers have the integrity to talk about that openly with patients before AND after treatment, maybe then they will deserve to be trusted with such toxic therapies as chemotherapy. It is all too easy for those who have never been treated to minimize that kind of loss, since they don't have to experience it.

5. Although at time of discussing therapies the medical providers do not discuss the support drugs that are given to "help" patients take the blunt of toxic chemotherapies, it is standard to give such drugs as steroids and various blood production stimulating drugs, and when deciding about toxic therapy versus treatment like ovarian ablation plus hormonal therapy, if your cancer is such that you are able to choose less toxic treatments then you are not subject to the effects of such things as steroids and blood production stimulating drugs. I would recommend that you also need to decide whether you are willing to take them, because they are part of the standard chemotherapy package. In particular, I am concerned about the standard use of steroids. Some people, not all but many, gain weight with steroids. I believe medical providers are not very conscious of how badly that ends up predisposing so many breast cancer patients for recurrence due to increased body fat being a strong risk factor for recurrence. The amount of body fat is going to increase for most breast cancer patients once they are menopausal, but for those patients who gain even more weight with steroids, because of the menopausal changes it is very, very difficult to lose the added weight once it has been gained. Sadly, once a patient has completed treatment and has clear scans, they are left on their own to battle the war against the blubber they have gained. There is very little support focused on helping with this problem. One of the worst things about it is the doctors pat themselves on the back for saving a life, and are so blind to their own role in setting women up not only for the depression of being fatter but for recurrence of breast cancer, as well as promoting the development of other diseases brought on by excess weight. What good does it do to have the chemotherapy if the fat is going to encourage recurrence?
Diet and exercise are key to avoiding recurrence whether or not you do treatment. But at the same exact time that bc patients end up dependent on losing that weight or not gaining it, the steroids (added to any duration of more limited exercise during treatment as well as to the repeated periods of extremely low blood counts that cause repeated fatigue during treatment) cause physiologic changes to muscle tissue. Those who gain weight from the steroids then have less muscle tone after treatment plus more weight to carry around, and less muscle to exercise with. In addition, your testosterone level drops greatly with treatment, and testosterone helps with building muscle, so you won't have as much of that to help you out afterward either. These are all very important changes that aren't on the screen for health care providers, but they DO make a difference for cancer survivors.

6. The percentage of those who actually benefit from chemotherapy is low. Ask about that. You can go through all of it only to have it fail entirely.

7. There is no clear information as to how many patients not only do not benefit, but whose cancer is worsened by toxic therapies. Ask about that. I'm not talking about the possibility of leukemias down the road, so don't let anyone distract you with the low stats about those. I'm talking about how much or how little is known about what toxic therapies may do to increase recurrence, whether it be from mutations or other factors.

Well, I am sure all of this is longer than anyone, including me, wanted it to be. But it IS what I wish someone would have said to me. Foregoing chemotherapy may also mean you could have recurrence; it is a choice.

Best wishes,

[suzan w]

You can see in my stats I had da similar decision to make. I chose to hit it with the biggest guns available..A/C was no fun and I had to quit after 4 rounds, Herceptin...piece of cake in comparison. I had the Onco type DX done...showed risk of recurrence, tho since then it seems like all of us Her2 gals score in that column on the Onco...that's because Her2 breast cancer has a higher than 'average'? chance of recurrence. I feel so lucky to have had Herceptin as I firmly believe it is one of the drugs now available that will lead to a 'cure' for BC for some of us. It is a touch decision for sure. I am glad to see Jean chiming in as we did alot of conferring on this subject 3+ years ago. And a BIG HI to AA...see me in New Mexico!!!

[Sherryg683]

Cancer can go directly into your bloodstream without having lymphatic invaision, that's what I was told by several oncologists. So the fact that lymph nodes were negative does not mean that there is absolutely no cancer left. My brother passed away with melanoma this year, when diagnosed, he had no positive lymph nodes. A year later, it was in his liver. Chemo is no fun, but now a days it is doable. Everyone has to make their own choice. I wish I could have caught my cancer at an early stage. Knowing what I know now, I definately would have done chemo even then. It is terrifying to be told that you are a stage IV and be given such low odds of survival. I am of the belief that you do everything you can so that this monster does not come back with a vengence. There's no gurantee of anything of course but as long as I can be alive and with my family, I am willing to deal with any side effects of chemo...sherryg683

[BonnieR]

Snufi, you asked the $64,000 question. What if there is no cancer and I take all this treatment? You will never know. Many people have struggled with that. But what if there IS cancer left and you did NOT do the treatment? It is a big condundrum. I was in the same spot as you and really agonized over the decision. It was easy to choose to have a bilateral mastecomy, but what to do afterwards was less clear! I got 3 different opinions, (one suggested I do NO treatment), talked to alot of people, contacted groups like the ACS, had the Oncotype test done and prayed to God for a sign. Finally a social worker said to me "if it was a loved one faced with the same decision, what would you want THEM to do?" And I knew I would want them to take all the treatment that was offered. I know was a somewhat emotional decision. But it was based on alot of facts too. The biggest fact being that HER2 Cancer is very aggressive.
I just wanted you to know that I remember how if feels to be in your shoes. I know there are people here who can identify with you. It would help if your signature contained details.
You will get through this. Keep the faith.

[juanita]

my diagnosis was similar and i wanted to do everything i could to beat this. i did 2 tac and couldn't handle any more of that, then did 33 rads, and then did 6 cmf, which for me was just about like morning sickness when i was pregant and the meds took care of that. then i did my year of herceptin. that was 4 years ago and i'm still here making my kids crazy. the decision is ultimately yours, but i would really have a heart to heart with your onc or any of your other docs on this. good luck and we're behind you 100% no matter what you do.

[mcgle]

I am an anomaly, being weakly HER2+, but strongly ER+/PR+.

Similar path report to your own, but menopausal at dx. What is your meno status, Snufi? This comes into the equation.

I am three years out, having done neither chemo nor herceptin. My stats for recurrence within 10 years were taken from Adjuvant Online - 3% if I were HER2 - and 6% since I am positive. My case was put before a professor of oncology here in the UK who agreed with my limited treatment (surgery, rads and hormonal tx).

Try to get a more detailed response from your onc. Everything has to be factored in, and if you're not happy, get your case referred.

Mcgle (UK)

[Louise O'Brien]

Snufi:

I was in the same boat you were in two years ago. Small tumour - 1 1/2 cm., stage one, clear margins after a mastectomy and no lymph or sentinel node involvement. I thought that should take care of it and was shocked - and devastated- when the oncologist told me I was Her2 positive (I had never heard of it before) and recommended chemo plus Herceptin. Especially chemo.

I was so close to walking away from it but after a few weeks decided to hit whatever might be left - if there was anything - with everything possible.

Now, two years later I'm so thankful I did. The more research I did and the more I learned about Her2 positive tumours - and the role Herceptin plays - the more convinced I was that I made the right decision. Even chemo - after learning about the synergy between some chemo drugs & Herceptin.

I should add that I was 67 when I started treatment - all the more reason to have concerns about my ability to withstand that kind of onslaught. I got through it and today have no residual side-effects.

That was my decision. I just didn't want to turn my back on treatment only to experience a recurrence years later asking myself "what if.... "

[Hopeful]

I was dxed in June 2006 with 1.3 cm IDC w/DCIS component, 80% ER+, 50% PR+, Her2+++ node negative bc. My path report also showed a Ki-67 of 11%, which was "borderline" for positive. Based on my research, I decided against chemotherapy, being highly hormonally positive and with a low Ki-67. Fortunately, I was able to find an oncologist in private practice willing to treat me with one year of Herceptin without chemo. I did radiation tx while on Herceptin, and have been on an AI (going back and forth between Arimidex and Femara) since Oct. 2006. It was extremely important to me to keep my immune system intact, which would not have been possible with chemotherapy. Everyone has to decide what is best for them, based on what is most important to them. As you can read here, a lot of people are not comfortable leaving any stone unturned for treatment; in fact, this is a very common psychological mindset. Just realize that having chemotherapy is not a guarantee of no recurrence. The bottom line is, you do what lets you sleep best at night. Best of luck with whatever treatment plan you go with.

Hopeful

[Paris]

This is a very thought provoking thread and I think some very valid points have been made especially Alaska Angel's. I was in your shoes two years ago-no nodes, clean margins no vascular invasion and I had a bi-lateral mast. It is a difficult decision as we never really know whether the decision we make is the "right" one. We have to look behind us to see what the studies have shown to be effective choices but don't know what they will do for/to us in the future. To only have that crystal ball to guide us!

I do wish as Alaska Angel suggests that doctors be more up front with what the potential side effects are as I have personally experienced many side effects that very few get. Perhaps the doctors don't want to scare patients away from chemo. Chemo and herceptin really beat the hell out of me. I am still trying to get back to being the strong, energetic and smart person I was before cancer. Shaving my head was the hardest thing I've ever done. It was and is still at times very difficult.

Given what I know now about small her2 cancers and their aggressiveness I am very glad I did chemo and herceptin. I hope that as those herceptin pioneers get farther out from treatment we will continue to get good news. The only thing I wish I had done was to be more diligent in finding out about side effects of steriods and aranesp as there has been alot of controversy surrounding the use of red blood cell stimulants.

I would suggest you get a few opinions on treatments and if you can, go to one of the major cancer hospitals and to also consult with an onc. who has alot of experience with her2 cancers. Do your homework beforehand and have a list of questions ready for them. Make sure they answer them completely and if they don't then I would take that as a red flag. Hopefully the knowledge you gain will help make the decision more clear. If you are hormone positive ask for the oncotype dx test. You will also then be able to do hormone therapy as well. Ovarian ablation sounds intriguing as I've read that blocking estrogen is as effective and maybe more so than chemo but you have to have an estrogen fueled cancer.

Please let us know what you decide and post if you have any other questions. There are alot of very smart and kind women here!

Hugs,
Paris

[sarah]

I'd do both. I wasn't given the opportunity to do either the first time around with DCIS and just under 5 years out it came back - after being declared cured - and then I did everything and I'm still doing Herceptin - 3rd year.
good luck, stay well
sarah

[Jean]

Snuf,

I have attached an interesting article that will demonstrate why we just do not have all the answeres as to who will benefit from chemo - who will not,
maybe the near future will deliver more conclusive ability to idenity the genes involved with tumors.

Until we can have a clear answer we can onlyconsider what is available to us at present.

http://www.medicalnewstoday.com/articles/134495.php

We are faced with a very complex decison.
Best of luck,
Jean

[CLTann]

I am a minority in making my option on the very question when diagnosed with cancer. Alaska Angenl spelled out most of my concerns at the time of my decision. Although my onc advised to do chemo and Herceptin, I expressed my preference and he agreed with me. Remember that no doctor will adivse against using chemo lest the patient might sue later. The reported advantage of chemo is only 2 or 3 percent over hormone therapy for menopausal women. I am now 3.5 years after diagnosis and have been happy with my choice. Best luck.

[madubois63]

Like Paris, I wish docs would be more up front about side effects. Too much chemo induced leukemia in my case (very rare), but would I do it all over again - YOU BET! Of course, everyone's situation is different (I was stage IV from the get go), and everyone's decision should be their own. Do not let anyone (even your onc) pressure or rush you into doing something you don't want to do, but make sure you can live comfortably (and sleep) with that decision. As of yet, there is no cure for bc. Over expressing the Her2 gene makes our cancer more aggressive, and I personally would suggest at least doing Herceptin. For most, it is a very easy treatment. I don't loose my hair (I did Herceptin a few years ago and am back on it now), and it doesn't make me nauseous. Talk you to your onc and tell him/her how you feel. It also seems to me that now is the best time for you to get a second and even third opinion (any time is good for that though).

I know there are a lot of people out there in cyber space reading this and not posting because they made the decision not to get chemo and feel they will be ridiculed for their decision. Anyone brave (may not be the right word) enough to post your reasons for not doing treatments??

Snufi - good luck in your decision and keep posting!!

[rebecca0623]

Snufi - you can see my stats from my signature. I made my decision to do TCH (chemo and herceptin) and just finished the TC part December 17th. Last 2 rounds were hard and I have had some concerns about all of the White blood cell boosting shots and now having drops in red blood counts and anemia - only in last month of chemo. Also, just got out of hospital with large blood clot down sub-clavian artery from the port-o-cath which will remain in until I finish the year of herceptin - now on 2x daily shots of lovenox and high doses of coumadin which requires diet management. I say this to acknowledge that there are secondary issues to the chemo itself and I was not well informed of those "side effects".

That being said, and in my limited hindsight, I would make the same decision although I am much more apprehensive that the long term effects of treatment will take a toll on my body that might themselves decrease life-expectancy, whether or not cancer comes back. Ultimately I went with the statistics - at age 44 when dx I just wanted to be aggressive. I know you will benefit from the advice given here and make the right decision for you - thank you for the question.

[Believe51]

Snufi, wondering how you are doing today and hoping for an update when you feel up to it. Please know you are in my thoughts and prayers as you trudge forward making decisions. This thread is important to me and I appreciate what I have heard from all.>>Believe51

[lizm100]

Snufi-
I guess I will be the "brave one" to post. I had "DCIS with less than 1mm in its greatest dimension of microinvasive carcinoma" according to my pathology report. I was stage T1mic. I had a lumpectomy , re-excision, negative sentinel node, margins over 1 cm and 33 rads. I consulted with over 10 oncolgists in total and all of them advised against chemo/Herceptin because they felt that the risks of chemo outweighed the benefits for me. The oncolgists I consulted with ranged in years of experience; some worked in major cancer centers, small cancer centers, and some were in private practice. I have come across women who have had light treatment and are doing well and those that were aggressive in their treatment and still ended up with a recurrence. Basically cancer is a crap shoot (I hate that phrase). You need to made a decision that you can live with and not look back. Wishing you the very best in your journey.