Locoregional recurrence in the lymph nodes 16/37,

Butterfly66

hi

I'm new on this board. I was diagnosed on nov 22 of 2015 with a locoregional recurrence. it was detected by ultrasound. The onc surgeon who performed the mastectomy of my right breast at the same time as my reconstruction of both breasts, I had mastectomy of my left breast on February 2008,( my first BC dx was in Jan 21 2008)

I had my regular 6 month check up with my onc surgeon and my onc I told them what my other onc surgeon saw on a ultrasound they did the usual 6 month blood tests , felt my armpit and told me there was nothing abnormal this was Nov 11, and nov 16 I see both doctors every 6 years,usually 1 week apart

On Nov 22 my other onc surgeon at a different hospital called to tell me I had 2 positive nodes after he perfoyalnd it was 16!!! I had a breast mri and a pet scan both are clear except for the nodes both test showed only 2-3 positive nodes

I just started chemo las Wednesday Carbo/taxol ( I can't do AC again, it apparently tough on the heart)

I'm 49 yrs old, and really worried and scared I don't know anyone with this type of recurrence

Is there anyone out there with a similar experience, I would love to hear from you!!!

Positive energy to all

bevin

HI butterfly, hopefully someone will be along soon with some guidance . Sending you support.

KBeee

Butterfly, My recurrence was not in the regional lymph nodes, but I had a local recurrence in 2 spots; one of which was in the soft tissue right beside those nodes (no breast tissue left; just hanging out there in the soft tissue. I was treated with chemo, oophorectomy, and I am now on Letrozole and am doing well. Sorry you have to go through this again. Chemo sucks, but I did know better how to handle it the second time. How are you doing???

Butterfly66

hi KBEE

I'm so happy to get ur response. Im doing well, I had my first carbo/ taxol, a lot of nausea. In between the CB I have weekly taxol those are a breeze I did some research and I thik that by not doing rads on the breast with DCIS could be a result of this recurrence

Maybe the cancer cell was already there. Anyhow when I asked my onc he said whatever the reason it doesn't change my treatment.

I hear of recurrence in the lymph nodes but have yet to meet anyone who did?? I'm glad you're doing well KBEE )

Sopravvissuta818

Hi Butterfly66,

I just found your post, and am sorry you are dealing with this. I was diagnosed with a locoregional recurrence in the lymph nodes that I found myself, in May of 2016 with 5 of 21 nodes positive, same biology as my original bc dx. It's really scary and I have a hard time not thinking about another recurrence. I was 20 months out from my first diagnosis of IDC and was just beginning to get my head back to normal! I had a full axillary lymph node dissection, and my surgeon said he really cleaned the area up. Currently I'm having discomfort and pain under the arm and into the back and breast, and have an injured brachial plexus nerve that is causing pain and tingling in my elbow and hand. I started taking Anastrozole in January but had a reaction with hives, and am now on Exestamane (still get a slight rash) and am doing well. The worst side affect is pain and stiffness in my joints, mostly hands and wrists, and knees and hips. I have to do yoga or pilates to keep me from being completely stiff!

I hope you are doing well. Please share how you are doing and what you've done since your discovery. I could use someone to talk to who's had a similar experience : )

Butterfly66

hi sopravvissuta818

I hope you are doing well. I am doing great. I had radiation done on my axilla, collar bone and breast ( implants) my skin . Burned but afte 3 weeks all was healed I used Biofine a fantastic cream made especially for radiation

It's been a little over a year since my rads. I've had 3 petscans, the team saw something on my right lung, it was. From the radiation. Then ( I fractured a rib in a fall on the ice) and on a petscan it lit up a little , it also happens to be on the right side,again where I received radiation so they think that it is why it's taking awhile to heal

Sorry I'm writing on my iPad and it's glitching. I feel like myself again, i too have a little pain in my hip. I work out 5 days a week but what's really helped is my biking.

How are you?

Sopravvissuta818

Hi Butterfly66! My apologies, I guess I haven't been in touch for some time so I'm checking in. I was finally able to get past my fears of recurrence but have recently been struggling with joint, muscle and bone pain. I haven't had scans and visit my surgeon in July with hopes everything still looks as healthy as possible. I went back to work and am not working out like I used to and need to get back to it!

How are you doing? I hope your still doing well. : )

Butterfly66

Hi Sopravvisata818

I also haven’t been in touch in awhile. I’m doing great :-). Let me know how your scans go.

Keep well!!

Butterfly66

Butterfly66

Hi

Wow it’s been awhile! I just want to let you know that I’m doing great. I had a pet scan January 6. All is clear :-)

I’m so grateful!

Love to you all!

Butte

KBeee

Great news on the clear PET scan!

Butterfly66

Thanks kbee

How are you doing?

KBeee

So far so good................... other than recovering from the Iowa caucus mess!!!!!!