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Topic: Is chemo worthwhile?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jul 25, 2008 07:22PM

priz47 wrote:

I am confused! I had a unilatmastectomy with TRAM recpnstruction on July 14th. I am to do hormone treatment, a SOFT trial. My oncotype is not back yet. I have Stage 1, with largest area

.9cm My oncologist told me to think abt it while I wait for the oncotype results. Does having chemo give me a lesser chance of recurrence? Is it worthwhile to make myself sick for nothing? How can you make a decision like this?

D

Dx 4/22/2008, ILC, 1cm, Stage II, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jul 25, 2008 10:10PM Gitane wrote:

Hi priz47,  When you get the Oncotype DX test back you will need to get your doctor's opinion.  You will get your RS and ER PR levels and that will be a help in deciding. The Grade 3 part is the issue for you, I think.  Otherwise I would have said you didn't need to have chemo.  

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Jul 25, 2008 10:31PM cheryl58 wrote:

Hi priz47,

I was diagnosed a little over two years ago at the age of 47.  I had a 7 mm ILC tumor in my left breast that I found just by itching my underarm and happening across the lump.  The first time I met with my oncologist, it was at the end of the day, and she spent two hours with my husband and I explaining everything in great detail (with little drawings and everything!).  Anyway, my boys were 18 and 20 at the time, and I just really want to be able to see them settled into their own lives.  I told my doctor that I wanted to be as aggressive as posible; thus, I had a bilateral mast, 4 rounds of AC, and am now on tamoxifen.  If I ever have to face this disease again, I want to know in my heart of hearts that I did everything possible to fight it.

Get the advice and recommendations from your doctors, learn as much as you can about your disease, and then make your decision.  I asked my doctor, since she is female, what she would do if it was her, just to see what she would say.  Chemo is not easy but it is doable.  I watched my father go through three years of chemo for leukemia 20 years ago, and my experience was nothing like that.  I had great antinausea drugs and never once got sick.  I couldn't eat too much the first few days but I did not get sick.  I agree with Gitane that the Grade 3 would be the issue with your tumor.  Anyway, go with your gut instinct.  You will know what is right for you. 

 Many hugs and prayers for you!

Cheryl 

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Jul 26, 2008 02:27PM priz47 wrote:

Thanks for the reply. My boys are similiar age, 21, 19 and 17. I watched my son go through chemo for Hogkin's lymphoma. It took 2 cycles before we had the right cocktail of drugs to give him for the nausea and vomiting. I ran IV fluids on him for 48hrs after his chemo to keep him hydrated and I gave him drugs atound the clock for 24 hrs. I know my husband cannot do that for me. He would try his best, but he turned green when they took out my drain! I know I ned to wait for the Oncotype, but I am afraid it will come back inconclusive. I want to be aggesive but am also scared.

D

Dx 4/22/2008, ILC, 1cm, Stage II, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jul 26, 2008 05:58PM wallycat wrote:

The stage is less important than the grade (how aggressive the tumor is).

My onco explained it this way...chemo works on cells that are fast turnover cells (which is why gals lose their hair).  If you have a slow growing cancer, it doesn't really do much to those cells.

That is certainly over-simplification as I am sure genetic (oncotype dx) scoring offers more insight into the specific tumor.  

My onco score was low intermediate and I opted out; my path report showed 0-1 mitosis, grade 2 tumor.  As my doc said, chemo offers its own risks so it is a fine balance between benefit and risk.

Best to you!

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jul 26, 2008 09:10PM cheryl58 wrote:

Hi priz47,

I am so sorry you had to watch your son go through that.  It must have been so hard.  I know you are scared.  I was too!  I cried and cried the day my doctor got the pathology back from my mastectomy surgeries and told me that she would recommend chemo.  I had absolutely convinced myself that I would not need it.  I was scared to death.  I know my doctor gave me a lot of tranquilizers or something in the first bag they run (which had the antinausea medicine, Ativan, steroids, etc. in it).  I was usually pretty out of it by the time they would run the chemo.  I religiously took the antinausea medicine for the first three days, and it honestly worked great.  I had a lot of heartburn and that was probably the worst of the stomach issues.

 To have gone through what you did with your son tells me that you are a strong woman.  It is very difficult to watch our kids be sick or hurting.  I am not an advocate for or against chemo.  I just want to say that if your doctor recommends it, know that you will get through it.  The most my husband really had to do for me was wake me up to take my pills.  I actually preferred to be alone the first three days afterwards to just try to sleep it off.  He is not the kind of guy who can handle these types of things either.  He did surprise me though when it came right down to it.  He was the one that cut my hair to within an inch of my scalp before it fell out and he was the one that emptied my drains after my surgery (I was the one that couldn't handle those because I felt like a science experiment)! 

 As wallycat said, there are risks associated with chemo.  You have to listen to your doctor's advice and make your own decision.  I will hope that the Oncotype comes back low enough for you, but please know that if it doesn't, you will make it through this! 

Hugs,

Cheryl

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