Suggestions Please

Good! I would never want to think I stressed anyone out! Have a peaceful night...

luve2runn, just to be clear in regard to your earlier comment about being able to do chemo later if you have a recurrence, the truth is that if cancer cells have already moved to another part of your body and you don't do chemo and later the latent cancer cells grow, the unfortunate truth at this point in time is that your life span will likely be shortened and you will likely die as a result of BC.



Yes, you can have chemo later but the tumour load in your body will be stronger such that chemo will be unlikely to eliminate the tumours permanently. Also, in this situation you could be on chemo for a very long time.



I don't want to scare you but just want to be sure you understand what having a distant recurrence actually means.



Of course, that may never happen and I hope it doesn't, but we just don't know.



I know it's a really hard decision and many of us have had to make it. That second opinion and discussion with another doc may help you to see things more clearly.

luve2runn, following up on Racy's question ... another one to ask yourself is, what if, for some reason, you can't tolerate Tamoxifen?  It rarely happens, but it could.

I've been thinking about your situation all afternoon, and I really believe the best thing you can do right now is talk to an onc who specializes in bc.   The point Racy made about your PR- does put you in a not-quite-as-common group, and input from an oncologist whose majority of patients are bc patients seems like the best idea to me.  He or she just may be able to add something to your thought process, so that your decision either way won't be quite so difficult as it seems now.   (((Hugs)))   Deanna

This is different, but when I was trying to decide to do rads or not, I labored over the decision.  One hour I was sure I decided right, the next hour I changed my mind.  I was going bonkers back and forth for 6 weeks, I visited MO, BS, and RO each two times, gathering their thoughts, anyway, what RO said may have helped me the most...throw out the stats, stop quoting me numbers...what if you have one little cancer cell floating around and you choose not to kill it???

Not all hospitals are willing to work with you on the cold caps thing. Just make sure you check with the hospital first. I didn't even know about them when I went into chemo. I wore wigs for about 8 months and within a year I had enough for a hair cut. Now 3 years later I have more hair than ever. I know that isn't much consolation, but it has sort of helped the sting of what happened to me to subside. If you do decide on chemo and don't do cold caps, be sure to check out http://crickettsanswertocancer.com which provides FREE wigs, mastectomy prosthetics, bras and lymphedema garments to BC patients. I got my first wig free from them. I picked it out. They paid 100% for it and you do not have to prove financial need at all. They were wonderful to me.

I would do the chemo. I had beautiful hair, seriously, and it was long and thick. I decided to take the hair loss as an experience, and now it is growing back. The loss is temporary.

The side effects of chemo can be extremely unpleasant. Chemo is not easy. However, you can do a lot to make it a bit easier on yourself. Probiotics help with the stomach and thrush issues. Getting a neulasta shot can help with fatigue and prevent complications. Exercise can help with fatigue and with generally feeling  crummy. It is not fun, but it will improve your prognosis.

luv2runne,  I can totally understand the overload trying to make a decision.  I do think you said in your post that you did NOT have any node involvement? correct?  That to me would make a huge difference in your decision making.  I was diagnosed 4 1/2 years ago and at that time the oncotype test was not done in the area that I live in Hartford Ct, but they plugged all of your stats(tumor size, node involvement, histological grade, nuclear grade etc) into a computer  program which then gave you the percentages of outcome based on your selected treatment plan.  Over time, many studies done have proven that chemo was being over used and actually did not help people and at times, even was detrimental to other organs in your body. I had a low grade cell and no node involvment and my onco said "you can have chemo if you want it" and I said why would I?  He really did not have any good reason why I should take chemo.  I have a close friend who is a pathologist and she advised me NOT to get chemo.  She advised me that if you do have a low grade cell, and again with no node involvment, the chemo would just pass over the low grade cell and not even kill it because it isn't deformed enough, therefore, I can totally understand the difficulty of your decision, as others have said, not to change necessarily to another physician, but definitely would get another opinion.  Good luck!

My onco score was 28.  The MO said that chemo would decrease my chance of recurrance by 4%.

After chemo, BMX and on arimidex for 5 yrs (currently in the middle of my 2nd year), my chance of recurrance is still 9%.  Nodes were neg and was grade 1 and ICD was 9mm.  The MO said there were other factors (she didn't elaborate and I didn't ask) that made the onco score high (28--intermediate range).  Chemo was very doable.  didn't miss a day of work throughout the chemo.  As others said, there are meds for almost every side effect.  I wore a wig for about 9 months.  Got used to it but was glad to be able to stop wearing it.  My hair, unfortunately, is unchanged from what is was before it fell out (I was hoping for thick, curly hair but got back my thinning, frizzy, gray hair).

It looks like you had a positive node. I would do chemo. There's nothing to say there aren't a few rouge cells out there in your lymph system. The hair loss sucked, but I found chemo to be more manageable than I ever dreamed it would be. iMO an 8% reduction in recurrence rate is worth presevering through possible chemo SEs.

With intermediate Oncotype scores AND a positive node, I would do the chemo. You are young and much more likely to fare better through any SE's. Chemo wasn't a picnic but it wasn't horrible, either. SE's can be managed pretty effectively. And, I do agree, the hair loss is very hard. The biggest thing it robs you of is the ability to have anonymity, as I only chose to tell family and close friends. So, I looked into Cold Caps (not cheap, inconvenient) but doable. I could not use them b/c my regimen was a little harsher and included AC.



I just started Tamoxifen and have a relatively easy time with it. I was expecting problems, based on all the others who've had a rough go with it. I only say this because you do not know how YOU will do until you try. Even though your sister had horrible SE's, that doesn't mean you will.



Good luck with whatever you decide.