Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.
Posted on: Sep 30, 2009 08:34PM
Just doing my own little bit of research. Has anyone in here who's had a reocurrance been on Arimadex or Tamoxifen when it happened? Or has anyone ever taken any of these drugs and finished the five year stint and then had a reocurrance soon after?
Thank you all for your replies.
Posts 1 - 30 (199 total)
Sep 30, 2009 08:40PM LindaC21 wrote:
I was just diagnosed with met to the liver in June. I was on Arimidex. My original oncologist (I have since switched) had me on tamoxifen after surgery, chemo and radiation for a very, very tiny tumor in my left breast 5.5 years ago. She switched me when I was about 2.5 years in. June marked 5.5 years since original diagnosis so I was devastated to hear of a metastisis. How could it be when my original tumor was so small that I was on the fence of needing chemo or not. I took the aggressive approach to treatment then.
My new oncologist casually mentioned recently that I was probably in peri-menopause at the time she switched me, but my original oncologist never, ever confirmed whether I was in menopause with any tests. She just changed my meds from tamoxifen to Arimidex. When I went in to hear the news of the metastatic cancer, she told me the Arimidex did not work.
Had she run a simple FSH test, she would have known whether I was in full menopause or not and could have made a better decision on how to continue treatment. That's her job. I am furious over this.
I hope this helps. Let me know if you have any questions. By the way, I never had any real side effects to either the Tamoxifen or Arimidex.
Sep 30, 2009 09:12PM kirby wrote:
I was on Arimidex for 4 years and was just dx with liver and bone mets. Original dx was in 2004, Stage IIB. Treatment was masectomy, dose dense chemo and then arimidex.
Go figure... I was so planning on celebrating my 5 year mark, but I guess you just never know. BTW, I have no symptoms so I was really taken by surprise.
Oct 1, 2009 08:11AM Vavoom10 wrote:
Thanks all for your replies. My heart goes out to all of you. This cancer shit sucks big ass.
While I can't say that I have had a reocurrance, it is always in the back of my mind.
I am currently on arimadex, have been since the end of May, about two weeks after I finished my six rounds of chemo. It's really giving me some aches and pains and I don't like it. However, I want to quit it every day but keep taking it because I hope it will keep anything away that is trying to form inside of me. At least that's how it's suppose to work, right?
I think it's all a crap shoot, toss of the dice.
However, I had been going through menopause when this happened to me. I'm 53 and had been having hot flashes since I was 48, so arimadex it was for me! I've only been on it since the end of May 09 and it's really giving me the aches and pains. I'm wondering if it's worth it, that's why my question to you ladies in this forum.
I know there are two other AI's that I could try, maybe they would not give me such side effects. I will definitely discuss with my Onc. at checkup.
Enjoyful, LindaC21, and Kirby: my heart is heavy for you...and no one had any symptoms? If it's me someday, it will be the biggest blow. What are your choices? what's the plan? more chemo?
LindaC21, I don't blame you, I would be furious as hell too. Are these doctors just playing with our lives? are we all just guinnea pigs? It makes me wonder.
Kirby, your treatment plan was the same as mine....
I do have another question to you all....what was your orginal diagnosis?
Oct 2, 2009 01:25PM PeggyDixon wrote:
Hi - I had a not great prognosis too but so far so good. I was on tamoxifen for 2 years then the onc did an FSH test and switched me to Aromasin. I'm just wondering how you found the recurrence without symptoms? Scans? My once doesn't do scans unless patients have symptoms but I've been wondering if I should ask for one. Sending you all big healing hugs and very best wishes.
Oct 2, 2009 03:44PM kirby wrote:
My oncologist does CA 27.29 every 6 months. My tumor markers were up for the first time since initial dx. He repeated it, again it was elevated, so had a PET scan to confirm I had liver and bone mets. Really pretty scary to me, but I guess the sooner I get treatment the better. :)-
Oct 2, 2009 04:11PM LindaC21 wrote:
As for me, I went in for a routine 6 month checkup with my oncologist on June 1. I had a 0.9 cm tumor back in January 2004 which was borderline for chemo. I took the aggressive approach to treatment and had the works thinking I never wanted to look back and say, "I should have the chemo when I had the chance." Was clean for 5.5 year so that 5 year "milestone" is merely "suggestion" in my opinion.
Anyhoo, I go in for a routine checkup and my onc checked me out, took blood, looked at me and said, "you're fine...see you in 6 months." A week later, she called in a bit of a panic and said my liver enzymes in the bloodwork were elevated. I asked if the cancer was back, she said she didn't know. Had a CT scan that showed mets to the liver. I was completely asymptomatic - my eyes and my skin weren't even yellow. I asked her what my liver enzymes were in December, 6 months earlier and she said they were normal despite my bilirubin levels rising. Now I'm wondering were they really normal 6 months ago or was there ANY INDICATION that they were starting to go up? I'll never know since I had enough of her and sought a second opinion which ultimately made me switch my cancer care.
I'm now on chemo - only treatment for liver mets. Had 11 rounds so far and recent CT scan showed no further metastasis but still a "burden of cancer" in the liver....onc is waiting for full report to see if the tumors are shrinking or stable. So, some good news but I would have loved to have had the report of NED. She said sometimes it takes as long as 6 months or more to show NED.
So Vavoom, that's my horror story.
Oct 2, 2009 05:05PM hollyann wrote:
Sigh...Scary stuff.....I am 2 years and 9 months out from diagnosis.......Stage 1b...!.6 cm tumor........Oncotype Score 11.....Bilat masts Tram recons........No chemo no rads.....Wish I had done chemo now......I just KNOW I am going to have a recurrance cause my gut kept telling me to do chemo to kill it all....DRAT!..........
Good luck to you all.......
Oct 2, 2009 11:59PM bre wrote:
I was diagnosed in 1/04 at age 49 with 1.7cm tumor, er+/pr-/her2+++, grade 3, nuclear grade 8, 12 nodes removed and negative, mast, 4 rounds a/c, perimenopausal at time, tamoxifen for 10 months, arimidex every since. Onc says I will be on arimidex indefinitely. No recurrence at this time. I also had alot of aches and pains after starting arimidex. Did alot of research and started taking glucosamine/chondroitin and msm. It took a couple weeks to notice an effect but the aches and pains are much more manageable now. I was looking forward to going off arimidex but am open to continuing it since onc thinks that's best and it's working for me. My risk of recurrence is quite high. Also had uterus and ovaries out. Wish you the best of luck.
Oct 18, 2009 08:29AM orchid wrote:
I was diagnosed 5 yrs ago at age 44 with DCIS as well as small amount of invasive cancer, stage 1. Had a mast on left side, DIEP recon. Two yrs later I learned I am BRCA2+, and wish I had done a bilat mast.
Have been NED for 5 yrs since surgery, and have been on Tamoxifen the whole time. I hated Tamoxifen, worst side effect was complete destruction of my sexual response. (I'm like a man with ED). Of all the issues around breast cancer, this has been the worst one effecting my quality of life. My marriage has taken a hit.
I was one month away from being done with Tamoxifen when I went in for my 6 month check up with the onc. My back was hurting and I'd lost my appetite, was losing weight. Blood test showed elevated tumor marker, so the onc ordered bone scan. This week I've learned that I have mets to the bone. Fortunately no lung or liver involvement, but I'm devastated by this news. I am having a bone biopsy on Monday, which will determine treatment plans.
Am still in a state of shock.
Oct 18, 2009 08:31AM konakat wrote:
I was on tamoxifin for less that a year when my mets came back. Didn't work for me. :-(
Oct 21, 2009 07:46AM AnneW wrote:
I took AIs for 4 years, then stopped due to quality of life issues. One year later I felt a lump in the other breast, a new primary. Probably had been suppressed by the AIs for god knows how long, but grew when I came off the meds. Back on AIs for 2 years now, want to stop due to joint pain, but I dunno...
Oct 21, 2009 02:28PM O3132W wrote:
Anne: I am on my 3rd week of Arimidex. and am having small se. Hot flashes (bad) and some light tingling in my legs but no bone pain. I am concerned as I already have Osteopenia. For the 4 years you took als did you also take lots of extra calcium and Vit D.???? Isnt this supposed to protect the bones from pain? Confused Cathey
Nov 11, 2009 08:53AM PaulaLS wrote:
I have been on Arimidex since March of this year after a mast w/reconstruction on right breast. Was DX with cancer in L breast yesterday following a reduction and lift on that side.
Nov 11, 2009 09:41AM Vavoom10 wrote:
OMG Paula, what are you going to do? What is the plan now?
AnneW, that is exactly what I think, that it just suppresses the inevitable. What is the treatment plan for the new primary?
Orchid, my thoughts and prayers are with you. Have you any news since your last post? Yes, arimidex affects my sex life too. I don't even hardly think about anymore, but menopause does the same to us women as well. When I first started going through menopause at 48 mind you, I was angry as hell because it ruined the sex life I was used to having. It dulled my senses in every way and it was hugely frustrating. But, sadly I had to learn to adjust. My husband and I always were very compatible in that area, same drive, which was medium. It's funny, but as we both got older all this medical crap started happening to both of us, me the BC and now him having to have a hip replacement at his young age of 48 and not knowing what caused it and also being diagnosed with arthritis, of which kind is yet to be determined. We got slammed pretty good medically in 2008/09. I sure hope and pray for a better medical future for us as well as all of you ladies and people who suffer from this disease everywhere! !@#$ you cancer! find a freakin cure for cryin out loud medical research community!
Ladies, I've been having periodic pain in my left breast and of course, I fear the worst. I have also noticed clear spots on my T shirts, like a dot of water by my nipple. I told this to my Onc who then referred me to my surgeon again,who had me undergo an MRI with contrast. That came back clean. But I'm still worried. I read on the pamplet I get with my prescription of arimidex that this med can cause breast pain, along with a host of other things. For me it's just watch and wait. My Onc has no definitive explanation for the "spots of water", said it could be a cyst that burst or little papules that break and leak. I'm not confident in the radiologists reading of my MRI scan, cause this is the same guy who read my mamogram last year and gave it the OK, then 8 months later I'm getting my breast cut off for DCIS with IDC and some node invasion. I asked my Onc if I could get a second radiologists opinion as this guy don't make me feel warm and fuzzy. He said I could, but didn't go into detail bout how I could.
I think I will post that question out here ladies. By the way, what does NED stand for?
Thank you all,
Nov 13, 2009 10:18AM Krystyna wrote:
I have been on Arimidex since Nov.2007.Started with Tamoxifen in July 2007 (got DVT). Recently diagnosed with bone and liver metastasis. No symptoms, metastasis were found accidentally. In Canada we do not have a routine CT or bone scans unless you have symptoms.
Just started clinical trials BOLERO-2 (randomized, double blinded Everolimus(RAD001) in combination with Exemestane(Aromasin)
I wonder if there is anyone else who is also participating in this particular clinical studies?
Diagnosis: 12/18/2006, IDC, 2,5 cm multifocal, 3/21 nodes, ER+,PR+,HER2-, grade 3 , October 2009 bone and liver metastasis
Nov 13, 2009 10:34AM PaulaLS wrote:
Hi Vavoom - No treatment plan as yet. A mast was recommended. I said I want every test known to medical science (and paid for by my insurance) before proceeding. Had MRI and bone scan yesterday - a CAT scan next week. Incidentally, I had a clean mammogram 2 weeks ago.
Nov 13, 2009 01:08PM ShirleyHughes wrote:
I found my lump in Dec. 04 after having a clinical exam and mammo in March '04. I had dd AC/T, mastectomy, rads, Xeloda for six months and started Arimidex May 19, 06. Went for my routine exam in Sept (I think it was Sept...LOL), complained about my LE arm and fullness in armpit...onc said CT scan..I suppose she was making sure there was no growth in that area. She also threw in a bone scan YIPPEEE!.....I had both scans and a parathyroid test and saw her the same day..now waiting. Anyway, she was surprised to fine one spot on my spine showed "suspicious for mets" from CT scan (recommened bone scan which I was having done right after CT), and bone scan said "concerning for mets" in that same spot. So, after thinking about it I decided to have a biopsy. It was mets. Surprised the heck out of my onc. So now I'm doing Aromasin and will have another CT scan in January. I had no symptoms.
Nov 13, 2009 07:38PM sweet98jen wrote:
I was on Tamoxifen and Zoladex for 3.5 years when I had my recurrence. Apparently some people are "slow metabolizers" of Tamoxifen and I happen to be one of them. Now after radiation and chemo again, I'm now on Femara and zoladex...hopefully works better!
Nov 14, 2009 06:45PM mrsb45 wrote:
I had a local recurrance in same breast 10 months after 2 lumpectomy's, 7-wks of rads and 10-mos of tamoxifan. Felt like neither worked for me. Have since had BMX and currently doing chemo... Wanted to do anything possible this time. Mine was picked up also during 6-mos checkup. Mammo was normal but 3 new area's noticed on MRI. Thank God we did MRI this time.
Nov 14, 2009 10:22PM Chelee wrote:
I was just discussing this same topic with two woman at my cancer center I met the other day. We got to talking about how we all recurred. (We are all Her2/neu+) One of the ladies had been on Femara for 1 yr & 4 months when she had recurrence. The other one was just past the 3 yr mark and recurred. As for myself I was on and off Femara several times because I kept staying in peri-meno range even after I have ovaries removed?! (Long story so never mind!) What I find frustrating is there seems to be no clear cut answer on which woman an AI will help and those it won't? They know some woman will respond well to them...and others get no benefit it seems? It awful to take a medication like Femara that you know damages bone & other sides affects with no guarantee that it will help you? (Other then the fact at least you know you did everything possible to prevent recurrence should it happen.)
Over the last almost 4 yrs I've been on these boards I've seen far too many woman recur on AI's and Tamoxfen. These drugs DO work great for some woman...but just not all unfortunetly. The things we have to go through once dx with bc. ARGH!
Nov 16, 2009 03:06PM weha wrote:
Dx Aug 08 2 tumours left breast. Treated with left mastectomy. Stage 2 ER/PR + Her2 neg 0/6 nodes. Opted to go on the SOFT trial and randomised to the arm of ovarian suppression + AI which I have been on for the past 12 months. End of Oct I opted to have my ovaries removed rather than have monthly ovarian suppression injections for 5 years. Both ovaries returned with pockets of tumour thru out them which has given me a bit of a shock! These little beasts have grown while on 12 months of ovarian suppression therapy and AI's. I feel very lucky as if I hadnt opted to go on the SOFT trial, or had been randomised to another arm of the trial that didnt involve ovarian suppression, or opted to do the monthly injection thing instead of having them out, those beasts would still be silently doing their thing. I see the oncologist end of this week for the results of the staging CT scans and treatment plan. Has anyone else had ovarian mets from Breast primary, how were they treated etc ...or as someone said is this another primary...
Nov 16, 2009 09:46PM poohfan wrote:
Vaboom10, I was orginally diagnosed in 2003 with stage 3B cancer ER/PR+ her2 -. Had mastectomy, chemo and then radiation. I was on tamoxifen for 2 years and then switch to armidex. I was afraid of tamaxifen causing uterine cancer. I have found out that I have the Brac 2 gene mutation so have had a total hysterectomy since then. I was having my lh, fsh, and a third hormone measure while on the armidex. Two of the three said I was in menopause. I did hit my five year mark and in sept 2009, six years, I had mets to liver and bones. I am currently going through chemo and will then go on another hormone therapy.