Need Treatment Option Feedback

Gayle56

I spoke to the oncologist again tonight and he still thinks I should do the
4 chemo treatments before radiation.  My oncotype score was 20.  My tumor was
less than a cm but the grade was a 3.  I was
pretty good with the lumpectomy, clear nodes and radiation with the 5 year
hormone suppresant pill.  I am really concerned about the side effects of the
chemo and how much it will affect working, activities, etc.  The onc made it
sound like it would not be too bad, but I am not so sure he can predict how I
will react to it.  He suggested I get another opinion if I wasn't sure but if I
see someone else and they say no chemo will I go with them because it is what I
want to hear or because it is the best thing to do.  I see my surgeon tomorrow
and will see what he says but I appreciate feedback from any of you that may
have or might be in the same spot right now.

Thanks in advance
Gayle

ruthbru

I did 4 rounds. I worked full-time through it, kept up an exercise program, went to all my kid's activities etc. etc. I didn't feel good; kind of like I had a mild case of the flu the whole time but I certainly was able to do everything that I needed to do and most of what I wanted to do to. But you are right, they can't predict how any individual person will react.

I don't know what is right for you, and yes, you can get another opinion. But do remember that you never, ever want to do this again...so if you need to do chemo to increase your chances of not having to.....well, then you just do it. And if you choose to, remember that chemo is actually working FOR you, it is not the enemy.

Best of luck! Ruth

riley702

Another point is that chemo might actually be easier that the hormone suppressant. Chemo wasn't fun, but doable. The side effects gradually faded away over several months. Radiation made me sleep 12-14 hrs a day! Tamoxifen and now Aromasin, however, have trashed my health worse than the chemo. I now have metabolic syndrome, or pre-diabetes combined with a fatty liver that puts me at risk for heart disease. I also ache in every joint in my body. It's worse in my hands, hips, and knees.

I don't regret the chemo at all, even though I lost all of my fingernails and toenails (amazingly, it didn't hurt!), even though my eyes watered constantly from the time my eyelashes fell out until they regrew. As Ruth points out, we don't want to do this again, and chemo may be our best chance of not having to. I don't regret the BMX and I don't regret the radiation. The only thing I regret was letting the onc. talk me into taking the anti-hormonals when I was only slightly ER+, and I stopped taking them on Christmas Day.

Good luck with whatever you decide to do or not do.

mommarch

I too am having a lot of problems with the hormone blocking med.  I am on Anastrazole started Dec. 8, 2011.  Pain in arms and legs, depression.  Seeing the ONC tomorrow and we are gong to have a come to Jesus meeting about this.  I can't live this way.  I had 4 rounds of AC Chemo and 12 rounds of taxol every week for 12 weeks and the last month has been more hell then the Chemo.

Momine

My cancer was more advanced than yours, so I did not really have a choice. I did 4 rounds of chemo before the BMX and then another 4 after. This means I was either doing chemo and/or recovering from surgery for the past 6 months.

Chemo is not fun. I am not going to try to kid you that it is a cakewalk. Some of the stage IV ladies have been on chemo for years and I am awed by their fortitude and stamina. However, 4 treatments, assuming you do not have any really freaky SEs or complications, should not be too bad. You will most likely lose your hair. You WILL get tired. You will have some kind of trouble with your stomach, either constipation or diarrhea or both. There will probably be a couple of other annoying effects, like funky nails or taste buds that get messed up for a little while. But it passes. In 9 weeks you will be done and in 12 weeks you will start feeling better again.  

bojo

Hi Gayle,

although my pathlogy is very similier to yours, this is my second time around.  i am waiting for my score to come around, but i already decided if it is over 18 i i will be doing chemo.  saw my MO yesterday he suggested rads, tamoxifen 5 years  and lupron.3-5 years.  I see my RO tomorrow have questions about another 37 rads although different breast.  Don't know much about radiation se's.

Good luck

Jo

truebff

My score was 19 and my onc (head of department too) was cool on foregoing chemo.

Our fight is still over the hormonals.

truebff

BTW, how do you find our how MUCH you are ER+/PR+, HER2- ??? I've heard a number of forum contributersspeak on percentages of those and have no idea what that means or how to find that info out.

Thanks for any insight.

bojo

truebff

Should be on your pathogy report

Gayle56

Just to update - my surgeon agreed that the chemo would up my percentages of this not returning anywhere in my body.  I am pretty sure I will go along with the recommendation.

 Ruthbru - I am glad to hear you were able to still do your stuff with your kids and work.  I hope to be as lucky. 

Gayle

ruthbru

I would take Friday off for my infusions, and then lie pretty low over that weekend, but was always back to work on Monday. I did dose dense every two weeks with Neulasta shots (because I wanted to get it over with as soon as possible and also with the shots I didn't really have to worry that much about getting infections or anything). The weekend in-between treatments I did whatever I wanted (including traveling to a nieces graduation weekend 350 miles away). So really, other than the weekends after treatment when I didn't feel well, and feeling kind of creepy the rest of the time, life continued on pretty normal. I would say to get any big extra projects you have coming up done beforehand, or put them off until you are done. Also if friends ask what they can do; tell them they can bring you food! The people I work with did a meal calendar and brought us supper twice a week throughout chemo. That was wonderful because, even if nothing tasted that great to me, my family got great dinners without me having to worry about it (plus they always brought so much that we had plenty of leftovers too!), and depending on the age of your kids, you might need have someone get them out to expend some energy on a regular basis and think of more do more quiet activities for you to do with them.....I was in the teenage years, so I spent more time (than I usually would have allowed) watching movies (I usually wouldn't have enjoyed), video games, sessions of Guitar Hero etc. just hanging out/being together time.

Just take one step at a time and don't anticipate that any part will be horrible (it might be, but then again it might not). I did radiation and have been on Arimidex more than 4 years. Didn't/don't have problems with either of them.

PM me if I can be of any help! Ruth

Gayle56

Thanks Ruth for sharing that info.

I was thinking it might be best to do the treatments towards the end of the week so I have the weekend to rest up a bit so I can be back at work on Mondays.  But my weekends are busy - my daughter, who is 13,  is on a synchro ice skating team and is a dancer and from Thursday on it is nonstop dance and/or skating.  My sister is a big help with getting her places when I can't as my husband works half the weekend and he doesn't drive so he isn't much help with that part. 

 I guess I will just have to see how it all  plays out and get through one treatment at a time. 

ruthbru

Yes, figure out how it will best fit into YOUR schedule. This is a creepy annoying thing you have to do, it is not your life. It is good that your daughter is at an age where she is busy and has things to do and interests of her own. Take advantage of your sister, and pay her back later.