Positive Nodes - No Chemo

Benjamin73

I seem to be in a gray area as far as Medical Community is concerned. Onco told me a year ago Chemo would not benefit me because my Oncotype score is a phenomial 2, even though I did have 2 positive nodes. (Stage 1, Grade 2, 1.6 cm tumor, had bilateral masectomy). She knew this as we discussed it and still recommeded no Chemo. Of course that was well received by me. But a year later in a casual conversation I remarked I did have some axiety about it returning. (Hoping to hear something like, oh that's normal) But no, she then told me she had tried to get me to have Chemo (totally untrue, my husband was there as a witness). I had to call her on that, as this is my life we are talking about here. She may just have too many patients to keep track, but she has somone in each appointment taking notes. Anyway, how can I not be upset. Please don't tell me to have Chemo or that I should have, as it is too late now. Is there anyone out there told No Chem with just a couple of nodes, perhaps with a low reocurrance score, that would be reassuring to me. Please I need to be encouraged not discouraged.

fauxma

I may be totally mistaken but

I may be totally mistaken but I am surprised that she had the oncotype testing done.  It is not usually done with any node invoivement because chemo is usually done when nodes are involved.  It almost sounds like she had the test run and forgot the nodes were involved and when she got the results back she also forgot that nodes were involved.  But even if she knew that, I think it is so unfortunate that she felt chemo wasn't needed.  And now to tell you that she recommended chemo and you declined almost sounds like she is covering her mistake.  I am so very sorry that this happened.  If you can get copies of the notes that were taken I would.  I am hoping that there is someone here who had node involvement and did not have chemo.  I don't know what to tell you but you might consider seeing another ocologist and sharing what occurred and what the lack of chemo means and if you need tests such as pet scan, mri or others to see that it has not gone anywhere else.  Again, I am just so sorry this happened.  This journey is hard enough without these complications.  Kindest thoughts are coming to you.

Stef

button2

I am no doctor, but I'm

I am no doctor, but I'm pretty sure you didn't get proper treatment for someone with positive nodes. Perhaps someone with more experience could enlighten you further. It looks like some mix ups were made in protocol at your hospital. I would look into this immediately and book an appointment with a completely new onco to clear up any misgivings you may have. I think you know you need to make sure even though you are asking for encouragement only. There are probably things that could be done to remedy the situation and ease your mind. Good luck and keep us posted...you have found a wonderful on line community here at CSN..welcome!

desertgirl947

See another oncologist.

See another oncologist.

camul

I am glad you are here

I didnt have nodes involved and had chemo. I remember being told that if nodes were involved chemo was a definate. Then due to tumor size and grade, chemo and a mastectomy were the course of tx. I would get another opinion and see if it is not too late if chemo would still be beneficial. Don't think I could have faith or trust in her as my doctor after that conversation. I am proud of you for calling her out on it. So many people are afraid to question a doctor. Hugs, Carol

RE

???

I have never heard of no chemo when there was positive node involvement.  I would seek a second opinion, it is your health and you have a right to get the best care possible.  Best of luck, please keep us posted.

 

RE

hope67

I had one positive node and no chemo

I had IDC and ILC, size 1 cm and 0.9 cm and one positive node (ILC). Because both my tumors where ER and PR 100% positive, doctors decided that I would need no chemo. I too had mixed feelings about their decision. And so far so good, I am 18 months out of treatment, I am on Tamoxifen, and doing fine so far.

Carmen

lorij9

positive nodes, don't want chemo

i had left mastectomy and axillary dissection. On the sentinal node biopsy before the major surgery, they found 5 positive nodes out of 7 removed; during axial dissection, only one positive node out of all remaining removed-23? The med oncologist admits clearly that she thinks chemo probably will not help me because I have SLOW growing tumors and chemo kills fast growing cells. But she says , for an unknown reason chemo appears to benefit maybe 1 out of 10 with my form. The surgeon says she would "totally understand" if I chose not to get chemo. But the Med asks: what if we find cancer in your liver in a few years and you knew you did not do "everything" you could have done? I will be getting radiation and anti-estrogen pills too. My VERY health-conscious friends say they would not let either chemo or radiation touch their bodies but would alkalize, oxygenate, eat protective fats, etc.They believe chemo and radiation CAUSE cancer. I am afraid of chemo! I don't want to destroy my immune system, giving it further drugs to assisit accepting the chemo, then take shots to kick my bone marrow into overdrive to produce white cells, and all the while go to work with people and patients who are sick at work. What I'm asking is: has anyone had the slow growing, HER2 neg, estrogen pos. cancer with multiple lymph node involvement and NOT taken chemo, or heard of others who have?   Thanks millions for any responses.  --Lori j

lorij9

PLease do what you can to have enjoyable times and reduce stress. go on from where you are now!  Search online for supplements and practices that strengthen the immune system. Take care of , have compassion for, love yourself. Sorry my earlier comment was a new thread-didn't know how to work the site. Many of us are in sticky situations. Maybe not getting chemo will keep your body strong enough to do its own healing process. We don't know how our stories will play out. Personally I find prayer comforting, especially when I pray for others and the world. So many people are struggling in this anxious, chaotic world. But it is beautiful too, And I try to remember to look and aknowledge that. When I tell my story people give me love through their kind words and encouragement, and I think it is that more than anything else that keeps me going. My cancer is/was stage 3, with cancerous cells outside of the lymph nodes too. But today is a new day, sunny and very cold, and I am going to do something kind for myself and for someone else today, that is my goal, and deciding this gives me some peace. I pray all the best for you, for you physically, emotionally, spiritually; and that this difficult period you will find to be a worthy part of your life.   --Lori j

button2

lorij9 said:

PLease do what you can to have enjoyable times and reduce stress. go on from where you are now!  Search online for supplements and practices that strengthen the immune system. Take care of , have compassion for, love yourself. Sorry my earlier comment was a new thread-didn't know how to work the site. Many of us are in sticky situations. Maybe not getting chemo will keep your body strong enough to do its own healing process. We don't know how our stories will play out. Personally I find prayer comforting, especially when I pray for others and the world. So many people are struggling in this anxious, chaotic world. But it is beautiful too, And I try to remember to look and aknowledge that. When I tell my story people give me love through their kind words and encouragement, and I think it is that more than anything else that keeps me going. My cancer is/was stage 3, with cancerous cells outside of the lymph nodes too. But today is a new day, sunny and very cold, and I am going to do something kind for myself and for someone else today, that is my goal, and deciding this gives me some peace. I pray all the best for you, for you physically, emotionally, spiritually; and that this difficult period you will find to be a worthy part of your life.   --Lori j

I would just like to point

I would just like to point out that I have health conscious friends too, one of whom suggested I use lemon juice instead of chemo! In my experience, these "friends" feel very differently when they find cancer in their own bodies. It's so easy to make big statements when you are not the one in danger.

sbmly53

1 positive node, low Onco score, and

no chemo for me. i have no regrets. I made the decision based on all the info I could gather and my own instinct. I have been dancing with NED for 5 years and 1 month.

i am switching AI's from Arimidex to Aromasin due to side effects.

I asked two other onc's plus a PCP I work with and they said either decision was ok. Chemo would have changed my recurrence chances by 2% and since I had a low score, it was no chemo for me.

Sue

 

New Flower

Hi Benjamin

You did not mention if you have been taking anti-estrogen terapy and what was your patology and type of cancer. it is never too late to make sure that you are ok and healthy.

I am suggesting that you need to change your oncologist.

Good luck

debsweb18

node involvement

Ths is what I found out about the oncotype test when I took it 3 1/2 years ago. If you are premenopausal with lymph node involvement you do not qualify to take the test and will need chemo. However if you are post menopausal and have 1 or 2 node involvement you are eligible to take the test and if you have a low score you will not need chemo

 I had a score of 9 with one small tumor on 1 node. I don't know why the difference other than since chemo is not effective against slow growing cells (Indicated by a low score) the older you are, the less time for reoccurance or mets to occur. I've also heard the AI drugs post menopausal woman may take could possibly be as beneficial as chemo for killing stray cancer cells.

This is the first time I've seen this topic brought up on any boards and I also thought I was the only one with node involvement and no chemo. Im glad to finally see there are others.  I did have radiation even though I had a mastectomy. 

I see a lot of statements made about lymph node tumors equals chemo and mastectomy means no radiation. I am by no means an expert in all this, however everyone's situation is different and there my be reasons we don't know about why ones treatment may not apply to another's.

Benjamin 73- why is your oncologist now saying you should have had chemo? Are you premenopausal?

Do I sometimes wonder if I should had had chemo?   Sure. However, we can all have second thoughts about any of our treatments. Was it good for me or not? Some do well with minimal treatment and some end of with mets after full treatment.

I wish you the best of luck. Maybe a second opinion will give you comfort.

GlowMore

debsweb18 said:

node involvement

Ths is what I found out about the oncotype test when I took it 3 1/2 years ago. If you are premenopausal with lymph node involvement you do not qualify to take the test and will need chemo. However if you are post menopausal and have 1 or 2 node involvement you are eligible to take the test and if you have a low score you will not need chemo

 I had a score of 9 with one small tumor on 1 node. I don't know why the difference other than since chemo is not effective against slow growing cells (Indicated by a low score) the older you are, the less time for reoccurance or mets to occur. I've also heard the AI drugs post menopausal woman may take could possibly be as beneficial as chemo for killing stray cancer cells.

This is the first time I've seen this topic brought up on any boards and I also thought I was the only one with node involvement and no chemo. Im glad to finally see there are others.  I did have radiation even though I had a mastectomy. 

I see a lot of statements made about lymph node tumors equals chemo and mastectomy means no radiation. I am by no means an expert in all this, however everyone's situation is different and there my be reasons we don't know about why ones treatment may not apply to another's.

Benjamin 73- why is your oncologist now saying you should have had chemo? Are you premenopausal?

Do I sometimes wonder if I should had had chemo?   Sure. However, we can all have second thoughts about any of our treatments. Was it good for me or not? Some do well with minimal treatment and some end of with mets after full treatment.

I wish you the best of luck. Maybe a second opinion will give you comfort.

Benjamin73

Good Luck Benjamin73...........  I would get a second opinion if I were you however.

Double Whammy

GlowMore said:

Benjamin73

Good Luck Benjamin73...........  I would get a second opinion if I were you however.

I had chemo and wonder if I could have avoided it

This whole thing is a crap shoot.  My stage and grade were the same as yours, but nodes negative.  But my oncotype score was 31.  So I had chemo which I heartily agreed to.  Now in hindsight, I really wonder if I could have avoided it as I have been told that the anti-estrogen meds are every bit if not more important than chemo - and I had such a small tumor and negative nodes.  Yadayadayada.

Ah hindsight.  And remember, medicine changes with new data all the time, so who the heck knows if the same treatment regimen will be recommended 10 years from now and I'm pretty sure before oncotype testing, you would have had chemo no matter what.  Frankly, I think having chemo is every bit as dangerous as having cancer, but they usually stop it before it kills you.    Really, all you can do now is remember that low oncotype score and what it means.  Your oncologist ordered the test because she was uncertain about whether chemo would be necessary or not, that's the purpose of it.   I don't know why your oncologist now claims she tried to convince you to have chemo and you refused.    

If it would make you feel more comfortable, you can seek another opinion and if you no longer are confident in your oncologist because of her now claiming she tried to convince you to have chemo, you should probably change.  That discrepancy would difinitely upset me.   There are some good responses here from women who did not have chemo but had positive nodes so it is definitely protocol.

Good luck.

Suzanne