Arimidex alone or with chemo is up to me

tedmom

I  had mastectomy March 2011 and had Oncotype DX. It shows that I am in gray area. My oncologist and I have talked and she says she can see either choice for me. I have to make decision soon. Is there anyone out there that has had a middle score and had to make this choice? Please help me!

BioAdoptMom3

My score was also in the intermediate range (19) and my MO wanted me to have it.  I am thankful the decision was not placed in my lap.  It's definitely a difficult one to make.  I start T/Cx4 this coming Friday.  There may be some other factors for you to consider when you make your decision.  What is your tumor grade?  Since mine was a 3 that weighed heavily in the decision.  I am also 52 with our youngest child being only 11.  Our boys are 23 and 20 and I want to increase my chances of being here for college graduations (and HS of course), weddings and any grandchildren.  I had told him that so I am sure that also weighed heavily.  I would also consider the fact that you are stage 2 and PR-.  If you do a Google search for cancer math you can enter your stats and get a rough general prediction of your chances for recurrance with and without chemo.  You could also seek out a second opinion from another oncologist.  I am praying for your wisdom as we speak.

(((HUGS)))

Nancy

kira1234

I was also in the gray area. It really is a hard decision to make. I agree with Nancy tumor grade, size are important things to consider. My Onc. wanted my to be part of the on going studies to determine how much chemo helps those in the gray area, but I was unable to. My tumor and grade put my out of the study. They want people with poorer prognostic values in the study.

In the end, for me I wanted to do all I could to remain disease free.

TinaT

Hi tedmom, there is a fairly active thread on just this topic.  There have already been quite a few comments posted so might be helpful:

http://community.breastcancer.org/forum/108/topic/763815?page=1

I am right at the low cutoff (18) of that intermediate range and have chosen not to do chemo with my oncologist's whole-hearted agreement. 

Best wishes!

Valgirl

I think the grade matters a lot.  Chemo works on more aggressive tumors.  I had Onco score of 16 and my Onc said no one would recommend chemo for me.  My sister in law had a onco score of 23 and no chemo either.  She was also a stage 1 grade 1 though.

BTJ

There are so many amazing women on this site.  My thoughts and prayers go out to each of you and just reading is helping me a lot.

I was diagnosed with DCIS with comedonecrosis on Nov 11th.  I went to Boise; St Lukes' is great!

I had a core needle biopsy (12 sites with 10 g needle), met with a surgeon, plastic surgeon and radiation oncologist, had MRI, enhanced views showing a new area of concern.  Surgeon said he would take larger lumpectomy but I was good candidate for brachytherapy. All this in one day.  I would have to drive 4 hours each day for radiation treatments in the winter when the time came and I live in mountainous NE Oregon....we have snow.

Decided to get a second opinion so I went to Portland, Oregon (I live in a small town in Eastern Oregon mountains, 3 hours from Boise, 5 from Portland.)  Dr. Nathalie Johnsons' name kept coming up with amazing testimonies about the caring team approach to the disease.  So I made and appointment and saw her. I was pretty amazed I got in so quickly but it happened. She felt it was importand to find out what the other areas were so I had another xray guided biopsy...results fine.  I have a lumpectomy on Dec 10th and had a spacer placed for the radiation brachytherapy...5 days 2x a Day, then done.  I loved this.

On Monday I saw my radiation oncologist so he could check the space holder and they did CT scans to make sure I had enough tissue connected to skin to handle the intense radiation.  We scheduled 4pm on Tuesday to put in the Mamosite in which the radioactive material would be placed twice a day for 5 business days (off weekends).  Tuesday came and I'm a bit worried about the Mamosote replacememt, low pain tolerance, sore breast.  My husband had gone back home and I was staying with BFF  (I am 58 and have BFF's) and we had gone to the hairdresser and to do a little shopping.  While she was getting her hair cut I decided to call the radiation oncologist and find out if we had the pathology results back.  He said yes we did, but they were not what we had hoped for.  He asked me to come in as soon as I could and told me I have multifocal disease, all margins had cancer and a small tumor of 4mm was found that was a different type of invasive cancer.  He removed the spacer and sent me back to Dr. Johnson So, now I no longer could have a lumpectomy and brachytherapy...now I am having a mastectomy with immediate reconstruction using expanders and implants.  My surgery is scheduled for Dec 30th  with a sentinel node biopsy  (they did not do one early because they felt my cancer was so early and so contained) and they told me to expect to stay in the hospital overnight....be at my BFF's house to ring in the new year!  Wait for pathology for nodes and pray they're clear!

 My left breast is fine.  Looks great...58 years old, but good for it's age. I like it, I'd like to keep it.

My surgeon recommends a single mastectomy with a lift in the good breast to lessen the age difference of the two.  I think I like the sound of this and then I go back to....well if you're going to have all that pain and there is a 20% chance in 20 years that you'll get cancer in the good breast then why not just have a double which would be more intense recovery but at the end it would be all done and matched and no pain/surgery until the implants need to be replaced.

I decided on the single mastectomy (right side) and am scheduled on May 10th to have my expander removed and a silicone implant placed in the right breast.  The left breast...the natural one...I had planned a lift but now I am making myself crazy wondering if I should just keep the normalcy of have a normal breast...feeling, sensation, appearance. With a bra on or a bathing suit I think I would look virturally normal.  My husband and I would be the only ones to see me naked (unless I get an overwhelming desire to get opinions from a couple of BFF's)  I have seen some horrible reconstruction photos but my plastic surgeon has done amazing things.  I keep thinking if I don't do the lift on my good breast and I decide I don't like it; I can always lift or have another mastectomy but if I do a life and lose nipple/breast sensation I will be very disappointed.

Has anyone out there been through this same thing? My ps said that about 80% of women who have a life on the good breast come back a few years later for a mastectomy since that breast continues to age...aka...sag.  I like sag..I am 58 and love my breasts.

Good Samaratin Hospital has an amazing approach to cancer...maybe all cancer  centers do.  I have a surgeon and PA that are available and return phone calls. I have a Nurse Navagator who I can call about anything.  I have free access to mental health professionals, free massage, free library.  My surgeon has a PA that works 24 hours a day from what I can tell.  I have a lifestyle therapist who has given me guided meditation cd's, been with me at my procedures...even rearranging her schedule when she got the results of my path report so she could be with me.  A scheduler, a medicalist, a plastic surgeon and radiation oncologist that apparently talk to each other many times every day.  I am luck to have this amazing team.  I know there are some I have left out because, I don't know why, but my brain/memory has gone to mush with this overload of information and the number of decisions I'm facing. 

It Meditation helps calm my head and center my spirit but so far has not helped in making a decision.  If my sentinel nodes come back positive for cancer should I definitely have a double mastectomy...I want to scream.  I have a wonderful husband who is so supportive and a group of women friends that held each other up when one stumbles and I feel like I've falling into a crevasse.  Any info appreciated.  Blessings to all you brave women...we are amazing creatures!

I am taking Arimidex and having some pretty intense side effects; hot flashes, fatigue, headaches, brain fog, forgetfulness, mood swings, feel like an alien has taken over my body and mind.  I am getting accupuncture for symptoms but there is no cancer support group here in my tiny town of 12,000.  Any suggestions appreciated.  I apologise if I have posted this in the wrong place!

BTJ

What is onco type DX?  I am Arimidex without chemo or radiation. DCIS Stage 2 Grade 2 ER+/PR-

Radiation can cause problems on its own to other internal organs.  Have you gotten a second opinion from another doctor?  Is this your surgeon or oncologist placing the decision in your hands alone?  I can't imagine having to do that.  Good luck!

tedmom

Oncotype DX is a breast cancer assay test. They take all your information and look at others that match your criteria. They come up with a distant recurrence percentage and the score helps the oncologist determine the best treatment. Unfortunately I am in the middle so treatment is not quite as defined. They have already decided that I don't need radiation.

 I have to make my decision tomorrow. I know I will have to be on Arimidex for 5 years. It's the chemo part that I'm struggling with. I am in the reconstruction phase now, still having injections until they both match Then they take out the expander and put in the silicone implant.

Good luck in your fight!

mdg

I had to make the call...that was the worst part for me through all of this.  YOu can see my stats below but I am only 45 and have a 4 year old son.  My oncotype was 17 which is technically low but the highest number in the low zone.  My doc said at 18 and up the decision would be mine if I wanted chemo but at 17 no chemo.  I saw another med onc for a second opinion.  I did also have angiolymphatic invasion listed as "present" on my final pathology which freaked me out completely (meaning the cancer had an pathway to spread by blood but we don't know if it did).  I was also Grade 2 which is intermediate.  I chose chemo.  My compromise was doing cold caps to keep my hair.  I have had 3 of 4 taxotere and cytoxan treatments.  I am done with chemo next week...with my hair!  I have done very well through chemo - I guess I got lucky.  I have exercised 5 days a week through all of this and have had minimal side effects.  It has been easier for me than I anticipated.  I know how hard this is to make this decision..my heart goes out to you. I knew for me I did not want to look back and know I did not do EVERYTHING in my power to get rid of this...I knew I could never face my son if I did not do chemo and this came back.  I know there is still no guarantee, but I have done all I could do and I can live with that decision.  Best of luck and hugs!