Comment by onc. haunts me

[mom22girlz]

I saw an oncologist on March 14 and I am just now able to write this. He was very statistics orientated. He will retire in 5 months. I am stage 1. I know this is fortunate. He said that he knew 5/5 oncologists would recommend chemo for my situation, but he would not because the number of women who lived after chemo was not statistically significant. If I wanted it, he would give it to me, but said with his experience, he thought someone of my age, 47 would have more time to reoccur anyway or would get a secondary cancer from the chemo. Also asked about herceptin and he was not real interested even though I am her2+++ Now, some of this bothered me, but at the end of our appt., he said, Your children should know you well enough to remember you..... It was like, if I die, don't worry because they'll remember you anyway. My husband was shocked, but didn't want to draw attention to the comment until I told him how it upset me and he totally agreed. We decided to find another oncologist no matter what. So now I am waiting again. I don't want to beg for chemo, but am wondering why he would say I don't need it and then say that my children will remember me if I die........ susan

[Kimberly Lewis]

Sorry that you had to go through that, it really is the last thing you need! You have my lousy Onc comment beat. You are right to change. This experience with cancer made me realize how hard we have to fight sometimes just to get half-way decent treatment. I have always been one to not make waves but I spent 20 minutes lodging a complaint about my last Onc to his supervisor and the nurses all thanked me when no one was looking! It was awful... Thank God your husband is there to back you up and support you. Don't settle for less than what you deserve - Good care from a compassionate Doctor.

[Barbara H.]

Your experince tops mine. After I developed mets an agent from my insurance company called and said she would be my case worker. When I asked why I needed her since I had never had a case worker before, she responded that she had been I assigned to me because I was terminal.

I'm sure you will receive good advice from your new oncologist. If you are not near a large hospital that deals with cancer, it might be worth it to go for an opinion, and then receive the recommended treatment near your home.

Best wishes and good luck!

Barbara H.

[madubois63]

wow - he tops them all. I personally think that you should tell him the statistics of retirees living to enjoy their golden years. I am glad you are getting a new onc...he is outdated, out of touch and basically an idiot!!!



..·´¨¨)) -:¦:-
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((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

[Unregistered]

Wow.What a 'downer"! Get a new, positive, onc. asap. I have been 'pronounced' over so many times I have lost count. One time it was six weeks, another,' go home and die and get hospice', another time, one year---this was all 4 years ago. Now I am told I have 3-6 months. I am used to grim reports but I do appreciate so much those few drs. that keep hope alive. Oncs. are notoriously pessimistic as they see so many patients die. You wouldn't believe what i have seen in the back room, or what i have heard from oncs. and docs. it's no wonder that some people bury their heads in a book and refuse to hear or see anything. it's like being on a battlefield. You need to increase your odds, which are very good, and a new team is in order---stat.

[Becky]

Keep the faith with a new team in place. Your current doctor wins the ---hole of the year award, hands down.


At least you will be in better hands soon.

Love,

Becky

[AlaskaAngel]

I'm stage 1 too. The magic number is that 60% of early stage bc doesn't need any treatment other than surgery to never have recurrence, BUT... which ones will has been hard to figure out. My understanding is also that less the 20% of those who do get chemo benefit from it, whether it is because the particular chemo that was used wasn't helpful for their individual cancer or a number of other reasons.

It sounds to me like your onc probably realizes he is getting pretty burned out, and maybe he has a hard time knowing that so many people are still undergoing such drastic treatments that everyone knows most early stage patients don't benefit from and suffer through, with all the difficulties and changes that come along with having treatment.

I'm not trying to discourage you from having chemo, just saying that there IS a lot of truth in what your onc is saying, even if it is so confusing even to your onc that he is both wanting to limit the damage to you and at the same time trying not to encourage you to believe that you can't actually be among the 40% who need more than surgery.

The way that patients have been "staged" in the past is changing drastically. The huge amount of new genetic information is overwhelming and many are having a hard time figuring out just what the "truth" is, including a lot of oncs.

AlaskaAngel

Dx 2002 1.6 cm IDC HER2+++ and NED

[Cathya]

It is clear that this guy NEEDS to retire....it's way past time!!! Imagine what he would say to someone who is not stage one. If you were me....which luckily you're not...lol....I would take chemo and herceptin. The presentation of my stage 2 (only because of size 3 cm....neg nodes) had my onc recommending only radiation...until he found the tumor in my supraclavicular node. My view is to never trust a her2+ cancer as it likes to travel and do strange things. I'm not saying you should worry but follow YOUR instincts. He is obviously out of date and just waiting for day to come when he can pack it in. I feel sorry for him because I do think this must be the worst job in the world....or was for him...pre the new treatments like herceptin. You will do just fine but you must be your own (along with your husband as the point man) best advocat. Take care. God bless.

Cathya

[Sherryg683]

He should have retired 5 months ago and then you wouldn't have had to listen to his nonsense. ...sherryg683

[karenann]

Get a new oncologist!!!

[Sandy H]

That is too bad. Some times I think they mean well but don't say it well. Perhaps, they want to give you the worse and then if you do better or survive then you can feel like you won. For us it doesn't help us move on as we need hope. It will be hard to get pass this but you will. I went through a similiar situation and it took me a long time to put behind what I had been told and not to look at the stats out there. Wishing you well with your new oncologist. You need to be up front with the new one and tell him how you are feeling. hugs, Sandy

[CLTann]

I too am a stage 1 ER/PR/HER2 +++, node clean, mastec patient. I opted for no chemo and no radiation, knowing the side effects of these treatments as well as the chance of non-recurence with/without these treatments. I am with Alaska Angel and feel there is some wisdom in your onc's viewpoint. It is indeed the statistics that any onc can base his or her opinion on. Knowing that there is about an equal chance of getting recurrence with or without chemo, how do you recommend your patient, if you were the onc? Of course, the comment that your children will remember you is totally out of line. That onc should be disciplined or clearly told his wrong attitude. Most oncs will recommend chemo so that he or she would feel that the patient would have no complaint on the treatment method. All possible treatment methods have then been tried and the onc has no liability, legally or medically.

In the final analysis, one has to make up her educated election based on the best knowledge she can collect. This forum is useful and supportive for all of us, even though among us there are indeed honest differences in opinion.

Best luck to you and your husband.

Ann

[juanita]

Wow, yours has my first onc beat that's for sure. I hope that you have as much good luck with your next one as I've had with mine.

[sarah]

I would say being HER2+++ makes the big difference. Definitely get another opinion and from an onc not associated with that hospital. The whole idea is you don't want it to come back.
stay positive.
sarah

[Diane H]

Agree with Sarah, HER2+++ does make a big difference. A oldie but a goodie is to ask what they would do if it was their wife/daughter/ mother. Your doc must have been separated at birth from my doc. He also specializes in blatant tactless remarks. Hugs to you, Diane

[janet/FL]

Susan
My tumor was small. 9mm. But ER/PR negative and Her2/FISH positive no node involvement.
Two oncologists recommended AC treatment. But would not recommended Herceptin as this was before last May when the main studies came out on Herceptin. My first onc still would not recommend Herceptin for some of the same reasons your doc gave for not recommending chemo. In July I found one that recommended and gave the combination of Taxotere/Herceptin, followed by just Herceptin for a total of one year on Herceptin. I figured this was the right amount of chemo that I would feel comforatable with. I thought AC too much for me and not hitting the Her2 part of the cancer. Also I didn't feel right not doing anything to stop the possiblilty of the cancer returning. Find out all you can and decide what treatment you will be comforatable with then find an onc that agrees and supports and recommends your decision.
Hugs,
Janet

[clisa]

I wish I could make the our onc's see how much power they hold in the thoughts and words. The fears that haunt me as I continue thru my treamtnet have never come from reading articles, talking with freinds or spending time on these boards but always by some uncalled for inapprpriate comment miss spoke.


Never stop the fight - never stop to get everything that you can get from going forward without tbis disease - I would bever have given up chemo or herceptin with out a chance to try to live long an well as I can with disease. I never want to look back and say I should of.


Lisa

[Unregistered]

Statistics.

Why do they not set up an ongoing NO NAME NO PERSONAL DETAIL national cancer treatment database so that an substantial information base would exist from which to draw stats. (Say Age disease status treatment recurrence outcome height weight girth etc) (either obligatory or with patient consent)

OK stats are stats and putting such a complex and subtle disease into boxes is not easy but it surely has to be better for patients to at least have some sort of likley outcome indication, based on fixed and known statistical criteria and rules, than the current apparent lack of stats.

I have in the past looked for stats by age group disease type etc without much luck.

Any thoughts anyone,

RB

[Lolly]

Here's a suggestion; You could write him a letter, itemize the comments he made and tell him how his words made you feel, and then explain that you are moving on with your life ie: new onc, etc. because

you are rejecting his pessimistic outlook and plan on living a long time!


Then either mail this letter to him or have your husband drop it off or if you're feeling brave, take it in yourself. In this way you will be emotionally shedding yourself of this "baggage" and will hopefully no longer be haunted by his comments.


Again, just a suggestion, but never forget:

EVERY PATIENT IS DIFFERENT IN SPITE OF "STATISTICS"!


<3 Lolly

[AlaskaAngel]

I always wondered why no single major medical database seemed to be organized too, RB. I had thought that was part of the purpose of the cancer registry but probably that was organized more for bean counting than to help with figuring out all the differences to find solutions. And since testing for HER2 wasn't "standard" until there was greater recognition that traztuzumab would make a difference, there was only the limited coordination of whatever info happened to be collected in those clinical trials that were specific to HER2's.

In regard to the original comments the onc made, the choices for early stage aren't at all clear. The same oncs that advised me to do "everything" (chemo, rads, hormonal treatment) now advise me not to do "everything" and not to do traztuzumab late. Then there is the open question, if you find an onc who will authorize it (considering that we may only get it for a limited time unless we have a recurrence), would it be better to wait until the dust settles and they understand which of us do actually benefit from it?

And for those who don't benefit, could having the unnecessary traztuzumab effect any changes that make their cancers harder to treat down the road with anything else effectively?

A.A.

[Bev]

Hi, his remark about the kids made me depressed. For me I'm going to worry about the cancer I have now instead of the one I may get down the road from treatment. I'm thinking positive that with the internet, patients will be more informed and info will be shared more quickly with researchers. I think there's light at the end of the tunnel if we can hang in there with Herceptin. BB

[Unregistered]

A lot of people here have gotten chemo and herceptin for stage 1 breast cancer. You may want to seek a few more oncology opinions and educate yourself further to help you determine what is best for you. By the way, I didn't think your doc had very nice commments concerning you and your children. Not sure this is the kind of man I would want to get treatment from.

[Unregistered]

Just wanted to add that no matter how many people have or have not been treated for the same stage of breast cancer, every case is unique and requires individual treatment decisions. I hope you get the second opinions that you deserve to make a decision that you feel comfortable with.

[Jean]

Susan,
Just read your post! I am sorry that you are dx with bc. It sounds as if you are recently dx. It is not easy to digest all the informtion along with the fear and worry. In your post you only mentioned that you were Stage 1 (which is
favorable) were you node negative, what was your er/pr status (very important) and what was the size of your tumor? If you are concerned about having chemo visit the post on "do you fit this profile" and read about the Oncotype Dx test. This may be of some assistance in helping you make decisions regarding treatment.

My heart goes out to you - I too am stage 1 - er postive Pr neg. node negative
her2+++. My oncs. did not recommend chemo or herceptin.

As far as that dr. goes - you already know that he is not the doctor for you
or anyone else for that matter. It is a shame you had to be exposed to that on top of the dx.

Continue to search for information and you will be able to make the best
decision for you.

All Good Wishes,
Jean

[Liz J.]

Hi there,

I am sorry you had this awful experience. Some of the drs. need to be trained in human relations/compassion.

I don't know if anyone else on the board was told what I was told, but the first onc. (Thank God I didn't use him, had no bedside manner) and the second onc. (Who is a God send) both told me that the cut off for not getting chemo was 1 cm. I was given chemo as mine was 1.5 cm. I don't know if this is something they agree on in Brooklyn or what. I was dx in April '05 as stage 1, ER,PR and HER2 positive. I had a mastectomy, 6 rounds of CAF and am now getting Herceptin every 3 weeks.

My thoughts and prayers are with you. Get another onc. and hang in there.

Hugs,

Liz J.

[Petesmom]

I am stage I for the second time around. I have never had chemo or Herceptin but I am taking Arimidex this go round and I did have rads the first time as well as Fareston for 5 years. Your oncologist probably is burned out but that should not be your problem. You need someone who will help you make decisions and support you. My oncologist wouldn't win any awards for bedside manner but he is very thoughtful, very, very smart and up to date. He is willing to listen to me when I bring in articles or concerns about my treatment. You hang in there and find a doc who can help you make decisions and be supportive of your treatment. Blessings to you.

Petesmom

[Jean]

Liz,
Just curious - on your dx. were you node negative or positve.

Wishing you the best.
Jean

[Liz J.]

Hi Jean,

Node negative. God willing they got it right.

[Unregistered]

I was diagnosed 2004 with e and p positive stage 1 her ++
but was not offered herceptin or chemo
only rads and now arimidex
is it too late to ask for herceptin now

[Lyn]

Geee, the version I would give him is that my statistics on retirees is they usually drop dead within 6 months or develop a terminal illness, I like your chances better than his, you can tell by the stories on here that there are far more oncologist who know what they are doing than that old dinosauer, he probably sniffs ether at night to get to sleep, he is doing everyone a favour by getting out, but then if he has a family I feel sorry for them with his attitude to life.

Love & Hugs Lyn