Follow up

Double Whammy

I'm confused. Yesterday I saw a NP because my onc was out of town. This was the first time I'd seen him so we went over a lot and it was a good visit. My follow-up to date has been visits every 4 months with oncologist with bloodwork and chat, exams every 6 months by surgeon, and mammogram yearly. I saw the rad onc twice but she and I decided we really didn't need to see each other any more. I completed active treatment in December of 2010 for Stage 1b, Gr. 2, ER/PR+, HER-2 neg IDC. My oncotype score was 31 so I had chemotherapy. I also had radiation because I had a lumpectomy and I'm on Arimdex.

The NP said he thought I should also have yearly breast MRIs (a mammo in June and MRI in Dec) because I had "such a high recurrence score" and I have dense breasts. He said he will put it in his notes to the oncologist.

I told a friend (also a bc survivor) who has both a yearly mammo and yearly MRI. Coincidentally, husband is a rad onc. Her response was that this is recommended followup with my parameters. She had always sort of implied that I should have MRI follow-up.

I don't understand why if this is the "recommended follow up with my parameters" and if the NP thinks it's important, why I haven't been on that schedule previously? I will obviously chat with my oncologist when I see her next in July.

What followup do others have for early stage, low grade, high oncotype score IDC?

Thanks.

Suzanne

Double Whammy

PS
The best news is the NP put in a dermatology referral for me for this hair thing! I may have a biopsy to see if my stem cells are dead or just lazy! There may be hope. If not, then I'll know for sure.

Suzanne

MAJW

Double Whammy said:

PS
The best news is the NP put in a dermatology referral for me for this hair thing! I may have a biopsy to see if my stem cells are dead or just lazy! There may be hope. If not, then I'll know for sure.

Suzanne

Suzanne...
I don't have any real answers but I think it all depends on each individual, their type of bc, their treatment plan, etc...and what their oncologist feels is best for each person.....I went 19 months NED......I'm triple negative...it came back in my lymph nodes which were clean at the time of my lumpectomy......scans showed this....I then went on the oral chemo Zeloda for 7 months when it stopped working but I am grateful that it gave me 7 months of a normal life...after my first dx and when chemo and radiation were finished I saw my oncologist every 3 months..then 6 months...he told me they don't do scans, etc. unless blood work, tumor markers, showed a rise, mine did...or other symptoms appear..I discovered a lump right above my clavicle...I swear it came up overnight!
I'm back on chemo every 2 weeks...Avastin, which my onc fought to get me on since the FDA pulled it off the market in Jan. Plus Carboplatin and Zemzar ( sp?). .....

I'm rambling...but it is 4:30 am....lol. Hopefully others will have better answers for you...
Hugs and best wishes,
Nancy

epark

MAJW said:

Suzanne...
I don't have any real answers but I think it all depends on each individual, their type of bc, their treatment plan, etc...and what their oncologist feels is best for each person.....I went 19 months NED......I'm triple negative...it came back in my lymph nodes which were clean at the time of my lumpectomy......scans showed this....I then went on the oral chemo Zeloda for 7 months when it stopped working but I am grateful that it gave me 7 months of a normal life...after my first dx and when chemo and radiation were finished I saw my oncologist every 3 months..then 6 months...he told me they don't do scans, etc. unless blood work, tumor markers, showed a rise, mine did...or other symptoms appear..I discovered a lump right above my clavicle...I swear it came up overnight!
I'm back on chemo every 2 weeks...Avastin, which my onc fought to get me on since the FDA pulled it off the market in Jan. Plus Carboplatin and Zemzar ( sp?). .....

I'm rambling...but it is 4:30 am....lol. Hopefully others will have better answers for you...
Hugs and best wishes,
Nancy

Hi Suzanne
I'm stage 1 grade
Hi Suzanne

I'm stage 1 grade 3... I also did chemo and rads...just finish my last rads in January....per my on oncologist I will see her every 3 mo for the next 2 years than after that every 6 mo....Everytime I will see her she will examine me and take blood, tumor marker....I will get an MRI in 6 mo....I believe after that she alternate between MRI and mammogram w ultrasounds ..I will see her April 20 and I will ask her again

Good bless
Eva

missrenee

epark said:

Hi Suzanne
I'm stage 1 grade
Hi Suzanne

I'm stage 1 grade 3... I also did chemo and rads...just finish my last rads in January....per my on oncologist I will see her every 3 mo for the next 2 years than after that every 6 mo....Everytime I will see her she will examine me and take blood, tumor marker....I will get an MRI in 6 mo....I believe after that she alternate between MRI and mammogram w ultrasounds ..I will see her April 20 and I will ask her again

Good bless
Eva

Hi Suzanne
I'm still getting mammos every 6 months, but I really had to push my surgeon to order the MRIs as well. I, too, have very dense breast tissue and my cancer was missed on my "normal" mammo done in June '09, then diagnosed at Stage 3 in November! I really don't understand it--my insurance pays with no problems. Why would a doctor care if you have them--I often wonder if they get "red-flagged" or in trouble if they order too many tests. My onc. was totally on board with the MRI, but the surgeon is the one (at least in my case) who orders all the testing.

Anyway, as they say, the squeaky wheel gets the grease, and I pretty much demanded an MRI every 6-12 months.

Stick to your guns and go with your gut.

Hugs, Renee

Gabe N Abby Mom

Suzanne, as you know I was
Suzanne, as you know I was stage 3 at dx so I can't compare notes on this one. I'm just glad there is something for you to pursue for your hair. I know how hard the hair thing has been for you. Let us know what happens.

Hugs,

Linda

MsGebby

Hi Suzanne
I am stage IIa, grade 2, ER/PR+, papillary/cribrform, IDC cancer. My MO wanted me to start chemo back in September. I couldn't bare the thought of going through that even though she said my chances of recurrence were 36%. However, Oncotype DX disputed that claim by coming back with a score of 4%. So I did the radiation treatments (38 of them!) and just started Arimidex. I've only seen my MO once since finished rads. I see her on the 17th of April for a follow up. I will ask her about this schedule you put forth. I do know I will have a PET Scan shortly after this visit with her.

I don't have any idea of my schedule with her as of yet. It's too early.

This is a very interesting topic. Thank you.

xoxo
Mary

survivorbc09

missrenee said:

Hi Suzanne
I'm still getting mammos every 6 months, but I really had to push my surgeon to order the MRIs as well. I, too, have very dense breast tissue and my cancer was missed on my "normal" mammo done in June '09, then diagnosed at Stage 3 in November! I really don't understand it--my insurance pays with no problems. Why would a doctor care if you have them--I often wonder if they get "red-flagged" or in trouble if they order too many tests. My onc. was totally on board with the MRI, but the surgeon is the one (at least in my case) who orders all the testing.

Anyway, as they say, the squeaky wheel gets the grease, and I pretty much demanded an MRI every 6-12 months.

Stick to your guns and go with your gut.

Hugs, Renee

I get a mammo and an
I get a mammo and an ultrasound every six months and a MRI yearly.