Local recurrence after 9 years

karenmarie1

I was just dx'd at age 50 with a local  recurrence after original dx in 2001 (at age 41) that was treated with mastectomy, six rounds of A/C, & radiation. In 2005 I was dx'd with chemo-induced Congestive Heart Failure and just recently got my life back on track.

On Friday, I  had a slow growing tumor removed from the breast tissue remaining under the arm. My oncologist did a bone scan and CAT scan - both negative for mets. She is leaning towards Arimidex as treatment for the recurrence. I am worried about the fatigue side effect as that is already a fact in my life due to the CHF. Please comment on side effects of the Arimidex. Thanks. Karen

diana50

hi karen

i was on arimidex for 5 and half years. i didn't notice fatigue as much as just joint pain. it is a good medicine for ER+ cancers. one of my friends was on arimidex and switched to femara and had fewer side effects.  that is one option if you are unable to tolerate the arimidex.

 sorry you are having to do this again. hang in there. i was 49 when diagnosed and now i am 57. this cancer business is tough. how did they find the reourrance? did you notice it or found on mammo? at any rate; good luck and hang in there.

diana50

karenmarie1

Hi!

thanks for the response. I had a lump near the edge of my tram flap that was looked at 3 times by the radiologist starting in May 07. He kept saying fat necrosis. They finally decided to biopsy the lump -(I had been telling them it was VERY close to the original lump). volia! cancer!  Lucky that there are no mets since the damn thing has been there for 2.5 years!

debbie6122

Hi Karenmarie1,

Im sorry you have had to be part of this forum, Im sure other woman will be along to offer more help and support- I just wanted to send hugs your way, and tell you that arimidex is different for every woman, some have a lot of bone pain, some didnt have any SE at all, I had bone pain, hot flashes, loss of energy, back pain, but was more tolerable than tamoxifen, but was recently switched to aromiason(sp) seems a little better than the other two i was taking- There is a site here that talks mainly about arimidex that may be of more help to you- sending you big hugs

debbie

diana50

hi karen

thanks for letting me know how they found the cancer. i have concerns about the area where my nodes were taken out..and i had a lot of postivie nodes. there seems to be something going on there...and like you...they say necrosis. we,..as patients,...have to stay on top of this stuff even after years go by.  i am really happy for you that your scans were clean. that is good news. take care. check out the hormone treatment boards because they have a lot of discussion on various topics.  side effects are often different for each of us but i know the hormone treatments really work .

take care

bre

Hi Karen,  I have been on arimidex for over 5 years.  I started on tamoxifen for 10 months and found the fatigue to be intolerable so I switched to arimidex.  Arimidex gives me some aches and pains, mostly in my feet and hands.  I take glucosamine, chondroitin, and msm to combat those and make it tolerable.  I don't have any issues with fatigue.  I do have hot flashes but take that as a positive sign the arimidex is doing what it's supposed to and keeping the estrogen level low.  Everyone reacts a little differently but I find arimidex very tolerable and hope you will too.  Sorry to hear of your recurrence. 

Helmie

Hi Karen,

I had a recurrence after 8 1/2 years underneath my tram flap, on my chest wall. I had surgery, than chemo (mostly abraxine) weekly for about 3 1/2 months, than radiation, and than Arimidex.

I took Arimidex for about 1 year, SE were really bad. Back pain, and bad artritis pain in my hands. My onc switched me to Femara, which gave me no SE. Now, 3 years after my local recurrence I have lung mets. Now I'm off the Femara as well, and I'm checking into some clinical trials. By the way, I was 45 as I was first diagnosed.

I wish you good luck. You might want to check with your onc why he does not recommend chemo before he puts you on Arimidex. Best wishes, Helmie

karenmarie1

Hello Helmie!

thank you for the response. I think my oncologist is suggesting just Arimidex because I have heart failure. My recurrence is to the left side of the tram sort of under the arm. I had a lump taken out, then I have had two surgeries to try to get the clear margins.  The path report on the first surgery was show a large superfical area that was taken out Friday. I am still very concerned  since the lump was there for 2 1/2 years - How did they find your recurrence under the tram?

Helmie

Hi Karen,

I had a PET scan, which showed two areas of concern underneath my tram flap. First my BS thought it might be nothing, but he followed up with ordering a CAT scan, and than a biopsy - and boom, it was a recurrence.

I'm sorry about your CHF. That makes it more difficult to fight your cancer more agressively. Don't be affraid of the Arimidex. If you develop SE which are too strong, there are a lot of other AIs available your onc can switch you to.

Hugs, Helmie

annie1273

Hi Karen

I aso suffered a local recurrence. Nothing shows in all the scans.  My original dx was at age 40--13 yearsago!!  I had a mastectomy with immediate implant reconstruction and 12 rounds of CMF- which sent me into immediate menopause. Last spring I found a small lump just next to the implant.  Two drs told me - nothing to worry about-- scar tissue -- definitely nothing to worry about.  Finally decided I wanted it out.  Turned out to be a good decision since it was cancer- all the drs were surprised!!

 I am just finishing up 33 radiation tx  and then will start on Arimidex also.  I am nervous about the side effects just as you are.  But my onc has said it is the best course of treatment .  Says I need to stay on it for 6 months and "then we can talk" if it is too bad.  I plan on trying.  I don't know about you but this new diagnosis really hit me hard.  After 13 years I was finally feeling good-- guess I was wrong---  Ooh well-- fought it then and will fight it now.  Good luck and let me know when you start on the AI. 

Carol

karenmarie1

Hi Carol -

My docs were very surprised that my lump was cancer too! Go Figure!  Yes, I am pretty bummed out by the recurrence. I was just starting to feel pretty good after the CHF dx in 2005. It took awhile to get the heart meds right and awhile for me to figure out how to pace myself so I do not get too tired. Yep - like you said - just gotta keep fighting    Karen

Nichola

Since my tram diep in Dec 2008, my scar tissue has dispelled everywhere except very near the area of my first 2 tumours and my recurrence, where it is like a v. hard finger-like lump under the skin.  The skin is pulling inwards there too plus, I'm getting cramps there.  I've had the area scanned last July and was told it was scar tissue.  On reading this, I'm now not so sure.  Girls not wanting to scare you, but twice before I have had  false negative scans!

I hate this desease...

Nx

karenmarie1

I would demand a biopsy!

Yes, I was told for 2 1/2 years that my lump was scar tissue. The ONLY way to get a definitive answer is by biospy if you have a reconstructed breast. Just based on your previous experience and my recent experience, I would say call the doc!  Good Luck

Karen Marie

lilacsandoldlace

Hi Karen!  Sorry to hear about your recurrance!  I was diagnosed 01/2010 with a new cancer in the same breast.  Had a bilaral mastectomy and am still healing up from that.  I'm BRCA1 positive though and hormone negative so no Armidex.  I'm with you though, KEEP FIGHTING!!!! 

mags3

Hi ladies unfortunatly i'm now on my third recurrence am back in clinic tomorrow to discuss treatment plan,first diagnosed 1990 had mastectomy ,first recurrence in 1993 had surgery and rads put on tamoxifen, second recurrence 1997 had chemo put on aramidex ,learnt of this one recently and have been on aromasin but at last app given info on targeted chemo regimes,all now rests on the result from the ct scan results i had last thurs.We all must keep fighting