Anyone recur while on Tamoxifen?

KBeee · February 2015

Did anyone have a recurrence while on Tamoxifen? My first occurence was ER+(strong), PR+ (strong, HER2-. I had BMX, 4 rounds TC chemo and then tamoxifen. I was node negative. I never missed my Tamoxifen. I recurred about 1 year into Tamoxifen with a new lump on my skin over my pec muscle. I will know next week if it is in the pec muscle or skin when they do a further excision (they thought it was scar tissue...they were wrong). They are planning surgery, then rads, an oophorectomy then an AI. I am glad no chemo, but I also am afraid of no chemo since I failed on Tamoxifen. I'm wondering how others were treated.

Jelson · February 2015

KBeee, I am so very sorry to read that you are going through this. Is this new tumor also ER/PR+? I know that I have read here on bco that sometimes the assumption is made that the second tumor is a recurrence and treatment decisions are made without actually checking. oh and,Please don't think that it is you who failed the treatment, the treatment failed you!!

I often use the search function to find if there have been threads or comments on a subject that I am particularly interested in. Maybe if you restricted your search to this thread and to one dealing with new primaries, you could find others who have dealt with what you are facing.

Hope you kick this to the curb once and for all!

KBeee · February 2015

Last time I was 95% ER+, 90% PR+. This time I am 90%ER+ and PR-, so teh tumor pathology is different. That is very perplexing to the doctors.

I will try your search tip. Thanks.

katcar0001 · February 2015

Kbeee, I am so sorry about the recurrence. I think you are handling it with immense bravery. I have read some articles about the receptors changing with recurrences, so I wonder why the doctors were perplexed. I think that is one of the ways that the cancer mutates and becomes resistant to Tamoxifen. Is the tumor large enough to run another Oncotype test? It might be worth doing. If you are interested in the articles, I am sure I could find them again.

KBeee · February 2015

Katcar, I would love those articles. One of my concerns is that the doctors seem convinced that I just did not metabolize Tamoxifen (even though I was never tested for that) and even though the tumor is different, and a bit more aggressive this time. They seem to all assume that radiation and an AI will be fine. I hope they are not underestimating the aggressiveness of it...though they may be right; it may not be that aggressive; we just don't know. I worry that it may be resistant to AIs too, but by the time we'd find that out, it would likely be too late. After my surgery this week, I have requested the oncotype be run. MO said that it usually is denied in recurrences, but he is going to try since the pathology is different. We finally said if it is denied, we would spring out of pocket to pay the $4,000 for it. If it helps to make the correct care decisions, then it is money well spent. There's not much research out there on recurrenes and appropriate treatment if it si not yet metastatic. It's frustrating.

katcar0001 · February 2015

Okay, I have bookmarked a bunch of stuff--I will gather it together and private message you. Yes, pay for it yourself if you have to. I believe that Genome Health also will work with you if it's a self-pay. It's the best way to find out how aggressive this bugger is (praying not), and you must know how to tailor your treatment.

Odds4 · March 2015

KBeee, sorry to hear of your recurrence. Tamoxifen has been around quite awhile. There are many newer drugs available Arimidex, Exemestone, Femara and I believe research is constantly being used to continue to produce newer drugs. This is my 4th recurrence so I have been around the block with chemotherapy, radiation, BMT (18 healthy years!) and now it is back. I definitely got a Second opinion this time around using a teaching research hospital versus a 'regular' hospital. The more you know the better questions you can ask. If you feel like there should be more treatment then pursue asking about it.

tgtg · March 2015

KBeee--Sorry to hear about your situation, but not entirely surprised in light of new research being done on resistance development. Here's an article that shows that cancer cells mutate and thus develop resistance to hormonal therapy:

http://www.biosciencetechnology.com/articles/2014/11/exciting-gains-fighting-breast-cancer-hormone-therapy-resistance?et_cid=4282668&et_rid=45516029&type=cta

You can click on the pdf button to get a printable copy for your MO if you want. He/she may be unaware of this research (from very respectable institutions) that casts doubt on the usefulness of hormonal treatment for early stage cancers like yours. Or the MO may not want to be aware of it, in order to keep you on meds by claiming that your difficulty with them is your fault.

KBeee · March 2015

tgtg, thank you for posting the article. I will share it with my MO on Friday. My situation changed after surgery. Initially I was told I had a positive node, so they did ALND. The results the next day indicated that the 13 other "nodes" taken during ANLD were negative. AND the "node" that was taken from way up high in the axilla, actually showed no lymph tissue. So...it may be a second tumor! They don't know!!!! They sent it up to Mayo to make a decision on what it is. Those results are not back yet, so as you can imagine, my head is spinning. My recurrence initial tumor was just above my reconstructed nipple; right about where my first tumor was. If my doctors still think that they are just going to do radiation and other hormonal therapy, they're nuts. I failed within 14 months on Tamoxifen. I am NOT going to put my prevention of distant metastesis all in one basket of a different hormonal therapy when I failed so miserably before. I feel like I am fighting both my MOs on this. I do not ever want to hear again "this should not have happened, we do not know why it happened" because next time it'll be stage IV. I do not even know if I have clear margins at this point. The node/tumor/whateverthehellitis did not show up on ultrasound, MRI, CT, or PET...yet there it was. It makes me wonder what else is lurking in there. UUUgh. I see MO on Friday and am hoping for a plan that includes chemo...and to have that plan without having to fight for it. I despise this waiting game. We did send the initial tumor out for oncotype testing. I am pretty sure that will fall in the intermediate range or higher, since I was a "16" last time and this seems more aggressive. Crazy to have to fight for the care you need.

I digress. I am venting! Thanks so much for the article. I will add it to my arsenal!

AnnBR · April 2015

KBeee, I am so sorry to hear what you are going through. The waiting game and the unknowns are so difficult. I was on Tamoxifen for one year before I was diagnosed with a local, regional recurrence. This happened last April when I had a DIEP procedure for reconstruction. My PS found and removed in his words, "a funny looking node". It was located in the internal mammary area and turned out to be positive. This was at the Mayo Clinic in Rochester (I live in central Iowa), so I was immediately seen by one of their medical oncologists. She was not able to determine if the node was there since my first diagnosis (Dec. 2012) or if developed and grew while on Tamoxifen. I had 30 rounds of radiation, am currently on Letrozole and are being infused 2 times a year with Zometa. I am glad to read that your tests were sent to Mayo, they will figure it out. I hope you do not have to fight for chemo and that you will be comfortable with whatever treatment plan is recommended. My heart goes out to you and please know I will be thinking of you.

Ann

KBeee · April 2015

Thanks Ann! My results came back that the "node" was not a positive node, but was a second tumor, a full 6 inches away from the original. There was no lymph tissue or breast tissue present. Just IBC growing in the soft tissue under my pec muscle. Scary! That secnd tumor had a ki67 twice as high as the first recurrent tumor. Thr oncotype came back (just the first one sent) as 40, so chemo was a given. I Had my first AC last week and all went well

cjanet · April 2015

Hi ladies,

Here I am. Not sure if I recurred on Tamoxifen or the cancer just never went away the first time! I no longer trust imaging tests and never had as from the get go I got a PET scan after chemo the first time which showed no cancer activity. My surgeon warned me, just wait until we look at the tumor. Well she was right, I only had a 40% response rate to chemo. Anyways, I didn't take my Tamoxifen tonight, have meetings w docs tomorrow and will go from there....

KBeee · April 2015

Thinking of you. I am in a similar boat. I recurred after 13 months on Tamoxifen. Keep us posted. Hope all goes well at the doctor and you get a plan.

krayzwolf66 · May 2015

hi ladies, sorry we are here but it is what it is. I too had recurrence of my cancer after 1 1/2 years remission. Found two new growths in my left arm pit lymphs. Doing my 4th chemo this week with two remaining treatments. I wish you all the best of treatment as well as luck.

Blessedteacher37 · May 2015

Hi ladies,

Just discovered this thread...thought I'd share my case. As you can tell from my bio, I was diagnosed and treated for IDC in 2010...was on Tamoxifen for 3 years. In a routine Mammo last Feb., a small area of DCIS was found in the other breast. Doctors are uncertain if the Tamoxifen slowed its growth into IDC or if it formed despite Tamoxifen. I was not in menopause during my first diagnosis but my GYN recommended a total hysterectomy so that put me into menopause before the second diagnosis. The latest dx showed moderate growth cells. I am on Arimidex now...after full treatment again.

I was clear when I went for my annual appt in February. I think being on the "brink" of menopause caused the Tamoxifen to be less effective. It is so frustrating to take a medication for that long, only to have an additional diagnosis. Praying that anyone who is dealing with this odd situation can get some answers and have peace of mind.

BTW, I found Tamoxifen much easier to tolerate than this Arimidex. But you have to decide what is best for you all.

Ellen

katcar0001 · May 2015

Thank you for sharing your story, Ellen. I am also on the brink of menopause and on Tamoxifen. I would be really upset if all the changes I've made--restricted diet, weight loss, more exercise and daily Tamoxifen did not help me :-(. I understand your frustration to have taken Tamoxifen for 3 years and have a recurrence. This is such a complex disease. I am also confused about the long term statistics for ER+ breast cancer. When my MO told me that the cancer was curable, and that 80-85% of women do not recur, I didn't think to ask about timeframes. I think whoever said it was either 0% or 100% were more realistic.

labelle · May 2015

My mother's BC recurred while she was taking Tamoxifen.

capinva · July 2015

I have been taking Tamoxfen for 3 years and was just diagnosed with stage iv. There is a tumor on right ovary and cancer cells in the peritoneum. There is fluid leaking into the peritoneum which means I have to have it drained. I have had 5 drains so far. I am on Ibrance and Arimidex. Is anyone else had this condition. I'm just wondering how long I have to keep getting drained.

ICanDoThis · July 2015

I want to point out that, before there were AIs, post-menopausal women were treated effectively with tamoxifen. It's just not AS effective -- and in women with a low-grade cancer, the difference can be only 1 or 2%

KBeee · July 2015

Capinva, I am so sorry to hear of your recent diagnosis. I have not had the situation to have drains. If no one here chimes in, hopefully you can post it in the stage IV forum because there may be some gals there who have had experience with that. It must be so frustrating. (((HUGS)))

Lunalin · July 2015

I had recurrence after 5 years on Amorasin, 10 years after initial dx. After surgery in November to remove pectoral muscle, radiation, I still don't know. I could not tolerate Tamoxifen, back on Aromasin.

DoingwhatIhavetodo · July 2015

I am going to join this thread,I was just diagnosed with a local recurrence. I had a double Maas

Mastectomy 3 years ago and have been on Tamoxifen! Having a CT scan and bone scan next week, very nervous!

KBeee · July 2015

Doingwhat, so sorry to hear of your recurrence. I also had early stage, node negative cancer which recurred despite BMX, chemo and tamoxifen, I have 3 more Taxols, then I will start rads. After that I will start an AI. So far, all is going well. Keep us posted on what's next for you. I think the recurrence is harder to swallow than the initial diagnosis, but once your plan is in place, then you can move forward

KBeee · July 2015

Lunalin, can they try another AI?

Nancy2581 · July 2015

i'm just curious for those of you who have had a reoccurrence - what were your percentages for ER and PR? I just started tamoxifen about 6 months ago.

Thanks,

Nancy

KBeee · July 2015

I was 95% ER+ and 90% PR + first time. This time my tumors were 90% and 85% ER+ and both were PR negative

Nancy2581 · July 2015

wow KBeee I would have guessed tamoxifen would have worked well for you. Geez I really wish cancer had some sort of rhyme or reason to it. I'm so sorry you've had to go through a recurrence. Hugs

Nancy

KBeee · July 2015

apparently some people do not metabolize Tamoxifen well and/or their tumors are resistant to it. I must got into one of those categories. I just don't know which one.

cjanet · August 2015

Well now I'm failing Arimidex so onto next treatment. One doc says Ibrance and Fulvestrant and the other says Abraxae, Afinitor/Aromasin, or Xeloda. I'm leaning toward the Ibrance.

KBeee · August 2015

hoping they find something that works for you!!!

sugarplum · August 2015

Hi all - I've been on Arimidex since Dec 2006 but need to switch to Tamoxifen due to decreasing bone density. I discovered a study done last year that proved Tamox is rendered ineffective unless you sleep in TOTAL darkness - no light coming under the door, LED displays - nothing. I found this link that gives suggestions to help Tamox work:

http://noumagazine.org/is-tamoxifen-working-for-yo...

Has anyone else heard of this? I asked my onc a few months ago & they acted like I was crazy. Still haven't made the switchover as I'm scared it won't be doing me any good....

Julie

Anyone recur while on Tamoxifen?

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