Mixed recommendations

Chemo was the most agonizing decision for me...it was worse than the BMX.  I had an oncotype of 17 which is the highest number in the "no chemo" group.  I got two opinions.  One said no based on oncotype but said if I felt chemo was something I wanted as insurance they would to 4 cycles of taxotere and cytoxan.  The other opinion said they felt I would benefit from chemo and 3 of 4 of the med oncs there recommended chemo - also 4 cycles of taxotere and cytoxan.  I was 45 at diagnosis with a 4 year old child and I was in excellent health other than BC.  I also had lymphavascular invasion present but clean nodes.  I had to decide on chemo.  I chose chemo.  I did cold caps to keep my hair during chemo after researching them in depth.  My med onc supported cold caps and had them available in her office too which made it easy.  I finished chemo on May with my long hair. 

You have to decide what is right for you personally.  There are no guarantees...just because I did chemo doesn't mean I don't worry about recurrence.  I just know I had to make a decision that I could live with.  I knew I could never look my son in the face if this comes back and I had not done the chemo.  I wanted to know I had done everything I could do.  I am happy with my decision.  It was the right thing for me.  TC was not that bad.  I tolerated it OK.  Now I am moving on with my life and no one would ever know I had BC let alone chemo. 

Good luck with your decision...just remember there is no "right" answer.....only the right thing for YOU. 

If you are referring to the oral pill Tamoxifen as chemo --- it is not chemo and you will not loose your hair like IV adminstered chemo treatments.  Patients loose hair with chemo treatments for Adriamycin, Cytoxan, Taxol, Taxotere and some others.  If you take the TX chemo treatment then you would have hair loss.

You do not need the stress of the constant questioning of your decision. You are siding with excellent docs, when the first didn't even do the right tests. I'd tell the doc you have decided and politely ask her to shut up - though not in those words.



I'd bet you'd feel better if you had a bit of chemo. You do seem to be a worrier, and it might help in this difficult time to respect that.



For the record, I am a worrier, and I'm worried that I am not more worried. I think I am in denial.

I decided not to do chemo with a oncotype score or 4 & 2 positive nodes. My MO weakly reccomended it but said he was "biased". I was told I needed to decide for myself & that he wouldn't hold it against me & that he wasn't trying to "sell chemo"........

Do any of the MOs you consulted treat only breast cancer? It would be hard for me not to side with the 2 at the "major" hospitals. They sound more current. If you decide to do chemo, you might not want to go back to the 1st MO for it. 8 cycles seems like a lot for the cancer you have listed. There is also a lot of debate about what positive nodes really mean.

Chemo wasn't "reassuring" to me. Some women will see it as an "insurance policy" but that analogy didn't work for me. The decision not to do chemo was harder than my decision to have BMX. I haven't started the Tamox yet, so I don't know what side effects I'll have. My MO doesn't want me on Lupron, so I'm going to get another opinion on that. Not sure how to deal with your PS?

I just wanted to answer your questions about the Cold Caps.  They worked for me.  I did have my hair thin and I shed a lot of hair, but I still have a full head of hair.  My hair is down to the middle of my back.  It was manageable for me to do the caps as my med onc office had a freezer and caps already there and available for use.  YOu do have to pay for them and cold caps are not cheap but it was worth it for me.  My son was 4 when I was diagnosed.  He does not know the word cancer or chemo...he knows I had surgeries and knows I needed some strong medicines that sometimes made me tired.  I plan to tell him everything when he is older.  He never really saw me very sick and that was important to me.  Chemo was manageable for me.  Everyone is different.  I managed to exercise daily (5 days a week) through chemo and never missed a workout except infusion days. I got up every morning and got my son off to preschool too...never missed a morning all through chemo.  I cooked dinner every night.  I had a few days where I was not feeling great, but I never even had to take one pill for nasuea other than what they gave me on infusion day.   I am not advocating chemo, I am just sharing my experience.  I did have some side effects...for me the worst was the skin rash that lasted 3 mo's.  It was awful!  I had burning, itchy hive like skin for months.  It finally went away in July eventhough I finished chemo in May. 

I knew for me that I could not sleep at night knowing I passed up the chemo...especially since my son is so young.  I know there are no guarantees but I know I did everything I could.  I don't want any regret.... 

Oh and you can see photos of my hair on my blog.  I posted a few weeks ago.  I usually wear my hair blown out straight but with cold caps you have to air dry.  It looks frizzy, wavy and shorter because of air drying.  My hair is down to the bra line on my back now that I wear it straight again.  I cut off 3 inches after chemo...my hair continued to grow all through chemo.  If you have any other quesions, PM me.  I don't mind.  Good luck with your decision.

I am also on tamoxifen.  I started that in June.

Hi ladies,
First, I like what Tarry said - 'I'm worried that I'm not more worried' - I was shocked at how calm I have been the past 2 months since dx. 
After my first post-surgery visit with the oncologist, I began to worry, to the point of being immobilized about making a decision.  She left it entirely to me; did not weigh in.  I researched, and the more i thought about it the more I thought I had to take the "insurance".  But that was a week ago.  Now, I have finally decided to do what feels right for my body.  I am stage 1 node negative 62 yrs. and have oncotype score 13.  I took two whole weeks to make a decision and as of today, I am going to move straight to radiation.

The oncologist said if I take the chemo it would be CMF x 8 every 3 weeks; which seemed like a long time.  Hair doesn't typically fall out, but the usual side effects can occur.  I convinced myself I could do it; but in the end, at least today, I decided I would believe the studies that show that a score of 13 is still within the low range where chemo is not significantly beneficial.  I just have to trust it and start rads so I can get it behind me. Then Arimidex for 5 years.  I am nowhere near retirement - I plan to work as long as I am healthy.  My kids are grown - youngest in college - grandchildren are very young.  I don't take this decision lightly.
Some of you ladies are young and may feel you need to have that insurance that you've done all you can to be there for your young families.  It is a tough decision, but whatever you decide, chemo and rads are for a relatively short time. 
I am just wondering - if there are positive nodes or micro cells, can they be treated with focused radiation?  or is the hormone therapy enough to address the node involvement? 
Best wishes and prayers for you as you work through your decisions.

VictoriaB,
Yes, it's a decision to make that doesn't really have answers....You are correct that the treatment is changing, and faster in the larger cities and research centers.  But it is based on many years of research and statistics. 
The gray area seems to be the lower side of the middle group...and if you look at the graphs that come with the onco score, you can see that with/without chemo graphs are the same  recurrence risk until scores about 11 when the risk increases without chemo.  The percentage of risk increases proportionately as the scores get higher.   
I guess it comes down to having a bigger insurance policy. 
Do you have to make a decision soon? 
Joan

Such a tough decision.  Upon my initial diagnosis, I felt exactly like yourself.  I struggled with the decision on which surgery to have, whether I should have chemotherapy, etc......My MO told me 10 years ago you would have had chemo just because of the size of the tumor.  Surprisingly, she ordered the oncotype before I had made my decision about surgery.....because I wasn't sure if I wanted a lumpectomy or total mastectomy.  I would need chemotherapy if I wanted a lumpectomy since my tumor was a little over 2 cm.  Long story short, my Oncotype came back at 25.   I no longer had to make a decision...it was made for me thank God!........I was having chemotherapy either way, before or after surgery.  We decided that chemo before surgery was the best option for me.  Not only would I be treating the cancer locally (shrinking the tumor) I would also be treating it systemically.  I am a healthy, fit, 42-year-old mom of three.....I was afraid of chemo too.  I am on T/C x 6.  I've been through one treatment and it is very "doable" for me.....everyone responds differently and I know my symptoms will probably get worse, but they may not.  As far as hair loss, it doesn't bother me at all.  I love my wig.  Its nicer than my own hair!  I may want to wear it for the rest of my life (LOL).   

B123, Interesting question about the marine phytoplankton.   I work with a marine biologist - I will ask her if she has heard that.  Also, my daughter is knowledgeable about alternative nutrition -- will ask her too.  Let me know if you find out. 

B123, can you switch PSs at this point? I'm new on this journey but I have switched my entire team due to a lack of confidence in the first. I also think in our circumstances it is EXTREMELY important to have positive relationships with our caregivers. Can't imagine having to listen to negative crap during treatment.

jwilco, I know what you are going through.  My M.O. told me that my oncotype score (13) did not reveal whether chemo would or would not be effective in reducing my recurrence risk.  She refused to weigh in when she called me breifly on the phone; then she said "call me tomorrow with your decision".....
It took me two weeks of agonizing research, calling other BC patients I know, and polling my family  I finally went to another M.O. and he said he would not order chemo for me.  I got a 3rd opinion over the phone - also no chemo for me.
Now I'm awaiting rads, but I "wasted" two weeks being stressed and unhappy.  I did not feel that I was competent to make that decision, and am still kind of annoyed with the M.O. 
Bottom line - I looked closely at the statistics. The benefit for me was pretty small, and could have been outweighed by risk.  I was glad I got the other opinions but it is all time-and-energy-consuming. We are all grappling with these unknowns.
Best wishes for peace about this. 
Joan

Bellajean, nobody should be treated like that.  These are your test scores and you are entitled.  Can you go there and ask for a copy? 
I am not sure how things go in your area, and how connected the M.O.s are.  I did go for a 2nd opinion after my M.O. was abrupt and not communicative.  However, every call was returned by her NP or substitute NP.  So I at least got answers after they ran it by the M.O.  The 2nd opinion went really well.  This young man was completely attentive, compassionate, and willing to take a stand to support my no chemo decision.  I have a follow up with him in January and after my rads, I may officially switch.  My M.O. had her NP call and order Arimidex.  I have not had any follow up.  I've learned it's all up to me.  Sometimes being persistent or pushy makes them less helpful.  But you have a right to your tests so that you know what you are facing.  What we fear most is the unknown. Good luck to you.
jwilco, how was your appointment? Did you get any more information? I hope you can get support for your decision. I was glad to have other doctors weigh in. It's always a task to see a new doc with the records and all. But it was worth it. Let us know how it went for you. I was also told that the hormone inhibitor will be the backbone of my treatment. After radiation, I can only hope that BC will be suppressed and will never come back.
B123 - am waiting to hear about the phytoplankton.
Good week end to all
Joan