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Topic: Deciding whether to do chemo

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Feb 11, 2012 12:19AM

firstcall wrote:

I had a long discussion with my oncologist today.  It is not a clear and easy decision regarding whether I should do chemo or not.  I had a mx with snb 5 weeks ago, and a lymph node disection 3 weeks ago.  I had a micro met on the snb but all of the nodes on the second surgery were negative.  I have a very good oncotype score of 5, but my tumor was intermediate in pathologic grade.  After long discussions and a lot of reading, I for sure need tamoxifen.  But I am not convinced that the small benefit I might realize from other chemo would be worth the potential risks.  I'm not talking about the short term problems that are temporary, but the other risks.  So....I'm considering just going with 5 years of tamoxifen, and not doing chemo.  My MO indicated that there is not a clear right and wrong course, either has its pros and cons.  And I'm a guy.   Anyone want to chim in?  

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Feb 11, 2012 12:45AM Racy wrote:

Hi firstcall. Congrats on the low oncotype score. How big was your tumour? What are the percentages of ER and PR? If you don't mind me asking, how old are you?

I see you are a doctor too so you should have a head start in making the right decision.

Wishing you a full and speedy recovery.

Dx 2010, ILC, 2cm, Stage IIa, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Feb 11, 2012 01:00AM , edited Feb 11, 2012 01:01AM by firstcall

Racy....thank you for your response... 

The tumor was 3.8 cm with clear margins in every direction and ER+PR+Her2-

RMX 12/29/11, lymph node disection 1/14/12, T/C 2/18/12, 3/9/12, 3/29/12, 4/18/12 Tamoxafen
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Feb 11, 2012 01:36AM Janie-bug wrote:

Well I know first hand what a difficult decision you are faced with firstcall. My oncotype score was a 2 and I considered doing chemo. The tumor was a low grade. From what I have read the chemo would have little effect on any stray tumor cells anyway. So MY question was how much faith do I put into the Oncotype test?????......I ended up not doing the chemo like you I was not convinced that the benefits out weigh the risk......Hope I made the right choice

Janie Dx 11/11/2011, IDC, 3cm, Stage IIa, Grade 1, 0/10 nodes, ER+/PR+, HER2-
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Feb 11, 2012 02:06AM aussieched wrote:

firstcall - hello from Australia.  Yes and I also know what a difficult decision it is for you also.  I had to make the same decision. Unfortunately I did not have the luxury of Oncotype to help me.  We did not have that available to us in Australia, so basically had to go with the information my doctor provided me.  I also had a micro met on the outside of my sentinal node after originally being told after the surgery that all was clear.  It was such a bummer.

I than had to have auxillary clearace, with a total of 30 nodes being taken, and now have lymphedema.  Fortunately the other 29 were clear. My cancer was 80% ER and 80% PR.

I ended up having an oophorectomy and radiation, but on evidence provided, did not have the chemo.  I still worry every day now, that I did not do the chemo.  In hindsight, after reading all the postings here, I sometimes wish I had done the chemo for that extra insurance.  However my medical team felt what I had done was fine, and basically they were also concerned about all the side affects of chemo, and the long term medical issues is can at times, cause.  At the time I was rushed to make a decision in 5 minutes, as I live 500 klms from my treating hospital, so had to make my mind up there and thenand not able to go home and do some research,

I am now on the aromatase inhibitor Femara, for 5 years at least, and so far so good.  From all that I have read it seems that the chemo seems to be more beneficial for the faster growing type cancers, and not the Grade 1 type, however I have also read that chemo can also be slightly beneficial for the slow growing type also.  So it basically comes back to whether you want to take the chance of permanent side affects from the chemo.  I don't think it happens that often, however it does happen.

Lucky for you that you are already in the medical profession, and I am sure you will have surrounded yourself with the best team to help you make that decision.

best wishes ched


Dx 5/11/2007, IDC, 2cm, Stage IIa, Grade 1, 1/30 nodes, ER+/PR+, HER2- Surgery 05/30/2007 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Ovary Removal (Both)
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Feb 11, 2012 02:26AM Racy wrote:

Obviously the two factors here of concern are the tumour size and micromet.

Then to consider which chemo is recommended and how harsh it is.

What does Adjuvent Online say in terms of potential benefit of chemo?

Dx 2010, ILC, 2cm, Stage IIa, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Feb 11, 2012 02:44AM Linda1966 wrote:

Firstcall our dx's were similiar except initially I was thought to only have DCIS, it was the dissection of the breast tissue and SNB that found micromets. The instant the idc was found I was advised to have chemo and while it was not the highest point of my life, I survived it and am happy to know I did everything possible to ensure I wouldnt have a recurrance. Im on arimidex for 5 years and was 42 at the time of dx.

What made up my mind for me was that not so long ago they didnt have the ability to detect micromets. My father had a melonoma about 20 years ago and then a few years later had his lymph nodes removed and biopsied, they detected no mets so he didnt have chemo and died 5 years later of a brain tumour that grew so large and quickly as to be inoperable. Rightly or wrongly I believe that if it had happened with our current technology, the mets would have been found, my father would have done chemo and could well be alive today.

Your the dr not me, but I feel we are still on the frontlines of micromets and neither we nor the most experienced BS knows whether  micromets do indeed prosper and become full blown mets. But my experience with my father not doing chemo has influenced me into believing they are as important to treat with chemo as any other met, if for no other reason than for peace of mind.

If you have preexisting medical conditions that could impact on the long term side effects, then I would recommend gaining a second and third opinion from highly qualified Onc's and then make your decision taking it all into account.

Im sorry you joined us here in BCO, but welcome. There are so many wonderful ladies and men who can help you through anything that comes up. The support here is truly amazing.

Dx 12/4/2008, IDC, 1cm, Stage Ib, Grade 2, 1/18 nodes, ER+/PR-, HER2- Dx 12/4/2008, DCIS, 6cm+, Stage 0, Grade 3, 1/18 nodes, ER+/PR-, HER2- Surgery 12/15/2008 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left) Surgery 12/19/2008 Lymph Node Removal: Axillary Lymph Node Dissection (Left) Chemotherapy 01/19/2009 Cytoxan, Ellence, fluorouracil, Taxotere Hormonal Therapy 08/10/2009 Arimidex
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Feb 11, 2012 03:04AM greenfrog wrote:

Lyndal makes a VERY good point about now being able to see isolated tumour cells (which I had) and micromets. Only a few years ago people were still being diagnosed as 100% node neg when in fact they weren't and as a result were potentially undertreated.

The presence of ITCs in my SNB along with vascular invasion in my tumour persuaded me to do chemo. I could only tolerate 4 of the planned 6 doses - but the onc told me that was 4/5ths efficacy of the entire course. (Yeah never really got my head round that maths!) Anyway having experienced the "joys" of Taxotere I have to say that if a cancer cell was able to survive that then good luck to it! When I met with my onc for the first time I naively asked him if it was better to "keep chemo in reserve" just in case. He laughed in my face and said "No - hit it now and hit it hard whilst you are still curable. If it comes back you will be Stage IV and terminal." 

Best of luck with it all - it must be tough being a man with this disease given how horribly "pinkified" the whole thing is.

Dx 5/2008, IDC, 1cm, Stage I, Grade 3, 0/19 nodes, ER+, HER2-
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Feb 11, 2012 04:06AM ketch wrote:

I have ILC, 1cm, clean nodes & good numbers, but the oncologist told me that I was on the cusp of whether to do chemo or not. I was expecting not to have to do anything other than a pill.

He said due to my age (52), he would recommend the chemo. My age again is on the cusp. He said his job was to keep me alive till a ripe old age and he did not want to look back 5-10 years down the road and wish we'd done chemo. That hit home as I had a beloved  aunt diagnosed at 57. She never wanted chemo, had 1 node positive, took tamoxifen and another drug afterwards. The cancer came back at 68 and she died quickly thereafter, but did do radiation this time, something she said she would never do. I took care of her during the last months and while she never mentioned wishing that she'd done chemo, I always wondered if it would have made a difference. I stated that once I found out I had BC. So when the doctor mentioned that, I knew I would have it. Scheduled to start, next week.

I do not want it, but I do not want to wish later on that I had.

Dx 12/4/2011, ILC, Stage 0, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 01/12/2012 Mastectomy (Both) Chemotherapy 02/08/2012 Adriamycin, Cytoxan, Taxotere Hormonal Therapy 07/01/2012 Arimidex Surgery 02/14/2013 Reconstruction: DIEP flap (Both)
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Feb 11, 2012 08:47AM , edited Feb 11, 2012 08:49AM by ma111

First call,

I am currently taking Lasik's for heart damage from Herceptin. The MO NP doesn't want me on it because of past kidney problems from Taxotere. I get it from my palliative care doctor. It also helps me with the breathing from damage to my lungs from chemo.

I am going to assume that you are early stage with negative tumor markers. A few things to consider:

                You should get at least 5 to 7 years from the tamoxifin and by that time newer better, less toxic treatments should be on the market. You could always have chemo as back up.

The National Institute of Health in Bethesda Maryland has been studying breast cancer vaccines. I was on one of their trails and it did buy me some time. They had a lung cancer patient go into 100% remission and a breast cancer patient have a 20% reduction in her liver tumor. This vacine is for CEA secreating tumors.

George Town University in DC is also trailing a nicer medicine for breast cancer if you are Androgen+. It only takes 5 days for the hospital to send them some of your tumor. You being a guy are more likely to be Androgen+.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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Feb 11, 2012 09:02AM momof3boys wrote:

That's a tough one! How many men has the Ontotype test been done on? Does it matter whether you're male or female? If you took that test out of the equation, according to my MO, you'd do chemo because the tumor was larger than 2cm.
My score was 16, no nodal involvement, no vascular invasion, larger tumor, but low Oncotype score. After going back and forth, I decided to go ahead with chemo. I'm 43, no other health issues, tolerating TC (just did 3 of 4 on Thursday) well. If I were over 65 with a 16 Oncotype score, I think I would have have done the chemo. But at 43 with three boys to raise and a tumor over 2 cm, my gut was telling me to do it.
Your score of 5 is so low.... My MO's group uses 11 as a cutoff for chemo, but I'm thinking it's mostly women. Although, one of the MO's himself (Dr Heim, Scranton PA) had breast cancer. Maybe look him up? I think the size of your tumor is the difficult part in the decision?

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16 Dx 10/14/2011, ILC, 4cm, Stage IIa, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Feb 11, 2012 09:04AM momof3boys wrote:

* sorry, if I were older (like mid sixties) would NOT have done chemo

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16 Dx 10/14/2011, ILC, 4cm, Stage IIa, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Feb 11, 2012 10:22AM ruthbru wrote:

The other thing to at least think about is; men quite often have a pretty tough time on tamoxifin....would you be committed to sticking with it no matter what the side effects?

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIa, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Feb 11, 2012 10:36AM thefuzzylemon wrote:

That is a tough decision....in my case, I didn't have an option.  I trust my healthcare team and I followed every word they said...and I was hit pretty hard.  Even after all of the SE's and the mounds of sh!t that I still deal with, I do not regret doing Chemo.  I tried to fight them on Radiation...but, naturally, I gave in because I just needed to do everything I could - I knew if I didn't I would have regrets.  Now, you and I have very, very different stages.  And, you are a boy and I am a girl ... I have not have any issues on Tamoxifen (started this in October) that I know of. 

What do your family and friends think?  Maybe you could make a list - Pros and Cons and discuss it with your ONC.  There's a lot of information out there that doesn't cover the entire spectrum...for example, I gave up sugar - I read that sugar feeds cancer....so, when I told my ONC this, he told me I was right.  He also told me that sugar feeds every cell in your body - so, yes it feeds cancer cells, but only because it feeds all cells.  Therefore, I really didn't need to suffer the way I was with my eating habits.  Something so simple, right? 

All I'm saying is use the best resources you have and make the right decision for you.  That's all that really matters.

The Fuzzy Lemon (including all her personalities) Dx 1/20/2011, 2cm, Stage IIIc, Grade 3, 14/15 nodes, ER+/PR+, HER2-
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Feb 11, 2012 10:49AM Claire_in_Seattle wrote:

Oncotype assumes you will be doing hormonal therapy, so I concur with Ruthbru on that one.  What if you can't tolerate Tamoxifen?  About 40% of women don't finish a course of hormonal therapy due to side effects.

The other thing to consider is whether we have a good body of knowledge about whether oncotype is as reliable for men as for women.  I would want to know this.

Chemo is no fun but not the end of the world either.  From your photo, it appears that you are a runner.  You will do much better if you exercise throughout.  I did the Chilly Hilly two years ago.  It was a gorgeous day, and it was the short course.  I walked the hills.  But I made it around the 23 miles of Bainbridge.

Good luck with your treatment.

Completed all active treatment (AC +T, lumpectomy, and radiation). Now on to the rest of my life. So much to celebrate. Dx 8/2009, IDC, Left, 2cm, Stage IIb, Grade 3, 1/21 nodes, ER+/PR-, HER2- (FISH)
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Feb 12, 2012 11:15PM firstcall wrote:

I very much appreciate each of your comments.  I have read through them several times.  I have a lot of thoughts and a few comments, which I will try to post tomorrow.  I've spent the weekend with my 3  young granddaughters in N.Y., just trying to take a break for the weekend.  It was my first time to meet the youngest.  I had planned to come here a month ago to meet her, but was side tracked by the BC thing.  I have really been going back and forth about this, and I hope to post some thoughts related to everyones posts tomorrow while I fly back to Seattle.  Again, your thoughts are very much appreciated. 

RMX 12/29/11, lymph node disection 1/14/12, T/C 2/18/12, 3/9/12, 3/29/12, 4/18/12 Tamoxafen
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Feb 12, 2012 11:40PM Racy wrote:

Hi firstcall, I asked about Adjuvent Online so I hope you will look at that.  Here is another tool that does the same type of predictions: 


For what it's worth, I really hope you don't end up 'having' to do chemo with an oncotype score of 5.

Dx 2010, ILC, 2cm, Stage IIa, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Feb 13, 2012 01:58AM , edited Feb 13, 2012 02:05AM by coraleliz

This Post was deleted by coraleliz.
Dx 2/28/2011, IDC, 1cm, Stage IIa, Grade 1, 2/4 nodes, ER+/PR+, HER2-
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Feb 13, 2012 02:43AM cookiegal wrote:

firstcall I posted a lot about this in the past. I'll be honest with an oncotype of 5 I would not do chemo. Heck I didn't do it with an oncotype of 22 and a positive node.

You deserve a cookie!
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Feb 13, 2012 09:47PM firstcall wrote:

Janie-Bug.  I think that is correct.  How much stock do you put in the
oncotype.  I want to believe it,
particularly since it's a good score. 
There isn't much data for men, but I think that it likely also applies
to men.

my micromet didn't show up on the initial survey, but was there on the final
pathology as well.  That's why I went
back for more nodes, and they were all clear. 
I would hate to be rushed to decision as you were.   I know that permanent side effects aren't
certain, but I have seen them in my patients over the years, and I know that
they are real. 

Racy - I am
reading as much as I can about the medications.   But I remain conflicted.  And thank you for the link. 

Lyndal1966 -
I don't think that there is a relationship with melanoma and BC, but I have a
daughter who had melanoma 7 years ago. 
Her SNB was negative, and she is doing well.  But I think that melanoma doesn't respond
very well  to chemo, while BC more
so.  And I am obtaining further opinions
this week. 

Greenfrog -
yes, if I were to do chem, now is the time. 
And pink is definitely not my color.

Ketch - you make
good points.  Again, I realize there may
be some benefit to chemo, but I don't think that in my case it is very

Ma111 - good
information, thank you.  And I am
committed to tamoxifin either way. 

Momof3boys -
yes, without the oncotype I would be getting chemo for sure.  Also, even with the oncotype, had I not gone
back for more lymph nodes I would be getting it for sure.  That is part of why I elected to have the
second surgery for more nodes.  And they
were all negative, giving me better numbers that way. 

Ruthbru - I am
committed to tamoxifin.  I don't know
what side effects I will have, but I am committed.  And I have to do that either way. 

Thefuzzylem -
I trust my MO as well.  And he didn't
encourage me to do chemo.  He said it is
a very tough call, and that I'm on the border.  
My family all look to my son, who is a radiation oncologist.  He is networking this week with some of his
MO friends as well. 

- Hi neighbor.  And thank you for your
thoughts.  I read that about 24% of men
stop tamox because of side effects.  It
would have to be bad for me to stop.  I
am as committed as I can be to that.  We
do not have a good body of knowledge regarding oncotype in men.  Or chemotherapy for that matter.  There is little men specific information
across the board.  And yes, I'm a
runner.  Im signed up to run Boston in
April.  That should be interesting, since
I have been thrown off track big time with my running.  I have mostly cycled the past few weeks
because of my surgeries.  I plan to stay
very faithful with my exercise.  And no,
I'm not a fast runner, I'm on the medical team for Boston.  

Cookiegal -
thank you for your input.  It all helps.

RMX 12/29/11, lymph node disection 1/14/12, T/C 2/18/12, 3/9/12, 3/29/12, 4/18/12 Tamoxafen
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Feb 13, 2012 10:04PM , edited Feb 13, 2012 10:05PM by CoolBreeze

What is your emotional personality?  If you don't do it, and cancer comes back, are you the type to fall into depression or be angry at yourself or otherwise be upset at length?  If you don't do it, will you feel uneasy?   If so, you might put a check mark in the "do it" side.

What kind of chemo will you get and for how long?

What worries you about chemo - what other risks are you concerned about?

Is there anything in your life - travel for work, difficulty in taking days off for example, that would make it difficult to do chemo? 

I am interested in oncotype and males. I honestly don't know a thing about it but I would wonder if it is accurate although I imagine your doctor has gone over that with you.  I didn't realize males had enough estrogen to make a difference.  

Being HER2+ I had no choice but to do chemo and I didn't find it that difficult but you didn't list short term problems as a worry so I won't go into that.

I know it must be very difficult to make that decision when there are no clear answers.

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV Dx 8/17/2009, IDC, 4cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Feb 13, 2012 10:18PM firstcall wrote:

coolbreeze- you make a good point.  I think my personality is that I will focus a lot on this question at the present time.  I will network, I will ponder, I will pray.  I will utilize all of my resources.   At the end of the day, I have to make a decision.  My personality is that I will not have regrets.  It is not my nature to look back and say, if only.   Because you can set yourself up for disappointment no matter what you decide.  My decision will be my decision, and I will go with it. 

Your other question about work.  That is a fairly major concern.  My schedule has some flexibility, but I work long hours.  The biggest problem may be, however, that I spend a lot of time with sick people.  I would have to have my white count monitored very frequently, and have to restrict my exposure to sick people accordingly.  That is doable, however, and I don't factor that in my decision.   It would be very difficult to miss much work.  I am self employed and have over 20 employees, who depend on me.  I also have 3 kids in college who I am helping.  I have put them on notice that they may have to fend for themselves.  But I do want to help them.  Again, I'm not factoring those things in.  I will have to work through them. 

I went to my MO appointment Friday, prepared for him to recommend chemo.  He did not recommend it.  My conflict is a reflection of his conflict.  If he had told me that he felt it was important, I would sign up.  He did not.  He spent an hour and a half with me and we talked in detail about the pros and cons.  He felt it was justified, but to elect not to was equally justified.  He had networked with other MOs and had mixed reviews. 

I mostly think that I should not do chemo.....but I still go back and forth. 

I know its important to embrace my eventual decision whatever it is.

RMX 12/29/11, lymph node disection 1/14/12, T/C 2/18/12, 3/9/12, 3/29/12, 4/18/12 Tamoxafen
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Feb 13, 2012 10:22PM Racy wrote:

firstcall, I tend to make decisions in the same way you described.

You are additionally fortunate to have your RO son to give an opinion. 

Dx 2010, ILC, 2cm, Stage IIa, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Feb 13, 2012 10:26PM Racy wrote:

Here is the link to Adjuvent Online calculator.


Dx 2010, ILC, 2cm, Stage IIa, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Feb 13, 2012 10:29PM firstcall wrote:

Thank you. Thats a good resource

RMX 12/29/11, lymph node disection 1/14/12, T/C 2/18/12, 3/9/12, 3/29/12, 4/18/12 Tamoxafen
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Feb 14, 2012 03:01AM coraleliz wrote:

I was initially given the "adjuvant online" printout by my MO & was told to decide if it was worth the risk or better put which risk I wanted to take. My MO didn't want to run the oncotype test for me because it he said it wouldn't change his mind. I was going to turn down chemo without the oncotype test but convinced my MO order it for me. I was going to do chemo for a intermediate or high score. My score came back "4"-(no chemo). It was a really hard decision for me even though I was 95% against it. I took almost 2 months to decide.

As far as Tamoxifen goes, I'm having some unwelcome SEs-but I'm commited & will do my time(my 5 year sentence). Also a runner(an injured oneYell)

Wishing you the best with this decision.

Dx 2/28/2011, IDC, 1cm, Stage IIa, Grade 1, 2/4 nodes, ER+/PR+, HER2-
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Feb 14, 2012 06:36AM ma111 wrote:

Side effects of Tamoxifen can be treated with celebrex.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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Feb 14, 2012 11:05AM firstcall wrote:

Celebrex?  I'll keep that in mind. 

RMX 12/29/11, lymph node disection 1/14/12, T/C 2/18/12, 3/9/12, 3/29/12, 4/18/12 Tamoxafen
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Feb 15, 2012 06:34AM ma111 wrote:

Yes celebrex. Also very few side effects to Celebex if any.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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Feb 15, 2012 08:16AM firstcall wrote:

I'm getting down to crunch time.  This has not been an easy decision.  I have been leaning towards not doing chemo, perhaps influenced by wanting to believe that I dont need it.  However, one comment my son made (who is a RO), even though my met is only a micro met, my tumor has demonstrated the ability to metastisize.  And the oncotype data isnt as clear if there are any mets.  I want to think the micro aspect of the met is good, but I have to admit, this beast can travel.  My son is conferring with a MO today for a additional review.  I really dont want to do chemo, and I know that is influencing my thinking.  I have been up most of the night....which is not a problem I generally have....

RMX 12/29/11, lymph node disection 1/14/12, T/C 2/18/12, 3/9/12, 3/29/12, 4/18/12 Tamoxafen
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Feb 15, 2012 08:27AM BelaT wrote:

Greenfrog and firstcall,

How do you know isolated tumor cells u have and how do u know micrimet?

I would appreciate any answer



Dx 12/15/2011, DCIS, 1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-

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