What Treatment to have

ladyness

What Treatment to have

ladyness

So confused and scared! Recently had surgery to remove grade 3 tumor but nodes came back clear, waiting to see oncologist advising chemo but would only reduce risk of coming back by about 7%.

Nettie1964

I think in order for any of us to even relate our experience, we need to know a little more about your diagnosis!  Type, Stage, Receptor status!  

Maybe if you post a little more, we can give you some feedback!

ladyness

Sorry new to all this, I have non hormonal bc, ductal it was very small tumor 12mm but a grade 3 does this help.

Nettie1964

Ok, I also have triple negative (my estrogen was at 2%) that's why my status shows both, during all of my initial treatment stages, I was treated as triple negative.  It was only at the end that they decided to throw in Aromasin on the "chance" of not missing anything because of the 2%!

I was Stage 2, large tumor, clear margins and no node involvement also grade 3!  Therefore I was told chemo and radiation by 3 different opinions!  But if your only stage 0 or 1, maybe that is why they are saying that chemo won't change your odds by much!  I took 4 rounds of Adriamycin/cytoxan followed by 12 weekly treatments of taxol, followed by 6 1/2 weeks of radiation!

Like I said, look at the Triple negative forum, if you are sure you are also negative for the HER2, read the DX and treatment lines and find some similar to you and see what road they went down.  May make it more comfortable for you to talk to your doctor about treatments!

Feel free to message me or ask any questions!

juneping

did your MO order the oncotype DX for you? it could help your decision making.

sorry...i don't know if i spoke too fast. not sure if it's encouraged for ER/PR -

Nettie1964

I was told they do not do Oncotype for triple negative!

ladyness

Sorry im totally confused here your'e talking double dutch at moment. Don't understand why chemo if nodes were clear and removed tumor.

Nettie1964

Chemo is suggested if the tumor was high grade and/or stage!  and if you are true triple negative, that usually gets chemo unless it is Stage 1 or 0.  At least this is what I have been told!  I was also told that there is the possibility of micro cells that could have escaped into my system that were not caught with the surgery!  

ladyness

Yeah he told me that about any cells that may have escaped. Just waiting to see oncologist which takes about 2 weeks, he also said which I can't get my head round that I have 30% chance of it coming back but if I do decide to have chemo it would reduce my chances by 6-7% ???.

KSteve

Ladyness - As a fellow triple negative cancer survivor, I can tell you that I've always heard that chemo is usually the normal protocal for TNBC.  You're very fortunate that it was such a small tumor as it is a vey fast growing cancer.  If your onocologist is recommending chemo, I would think long and hard about it before declining.  Maybe get another opinion or two to help you with the decision.  I know the % makes it look like it's not worth it, but if it comes back, you will probably wish you had done it.  Chemo, for the most part, is very doable.  But I understand your feelings.  It was what I was the most scared about, but my tumor was much larger and involved some nodes so I didn't have any choice.  I worked all through chemo (other than chemo day and the day after).  Losing my hair was probably what I was most scared about.  But even that was doable.  My hair is back to normal completely.  I know, easy for me to say because that was 3 years ago.  I wish you the best on your journey and don't hesitate to ask any questions you may have along the way.

Hugs,

Kathy

Nettie1964

Just wanted to add that chemo was very doable for me also. For my first four I only missed work the day off treatment and for the last twelve I only missed half a day.  

ladyness

I also have been advised that it is in case any cells have escaped, just feel with it been so small a tumor and nodes clear that's obviously good?      is it worth putting yourself through all that. Everything just a waiting game at mo and there obviously not in a rush to start treatment. Im thinking all I can do is wait and see what the oncologist says after all this is my surgeon that is saying this to me.

Nettie1964

Ladyness,

I know it's hard in the beginning, but try to be patient and wait to hear what your oncologist will say!  In the beginning, my surgeon told me that I would NOT need chemo, only the surgery and radiation, but after consulting with 3 different oncologist, one being at MD Anderson, I was told that I DID need chemo AND radiation!

Once you have a plan in place, you will feel better!  And with all the new meds, the chemo is very doable!  So please don't let that panic you!

juneping

ladyness - yes cancer cells travels...but only stem cells can potentially met to other organs. and even so not all stem cells can "stick" to the organs. that's what i've been reading. just want to ease your mind a little.....

Nettie1964

Ladyness,

Also, as I stated previously, if you are certain that you are triple negative, you should jump over to that board, there is a lot of good information there!

ladyness

I know best thing is to wait and see oncologist but don't know how you all coped with the waiting it's so hard. You all have helped me so much in just a few posts thank you all!!  Just not sure bout going through all that as a prevention with the % he has said so confusing. x

Nettie1964

Waiting is hard for us all, just had my follow up mammo and bone density, won't have results until 3/19!  So, I'm waiting also! 

We have all been where you are and everything you are feeling is normal!  So try  to do something you enjoy to take your mind off of it as much as possible!  I find playing with my grandbabies helps me!

You are in my thoughts and prayers!