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Recurrence after 25 years,different tumor receptors

Gottahavefaith
Posts: 21
Joined: Oct 2013

Im new to the board. I found the CSN by searching about Arimidex side effects and indolent Breast Cancer. Ironically, in doing so I read some posts by Cindy and Doris that sounded like my mom. Hearing what they wrote has given me some hope.

My mom was diagnosed in 1988. She had a large tumor and 7/17 nodes were positive. She got CMF at that time. Her 2 neu wasnt around then. Was not given Tamoxifen as she was premenopausal state and her onco was ardent about not using it. Did well and cancer free until three weeks ago.

Now, just three weeks ago diagnosed with what is thought to be recurrence. Spine, ribs, one spot on skull and two nodules small side in liver. We were told this most likely is "indolent" as prelim biopsy showed very high Estrogen receptors ( final path 99%). However this tumor is her 2 neu positive but the PR is negative. Obviously different from her previous tumor. Onco thinks still a recurrence where the tumor cells have started expressing her 2 neu and hes confident given a 25 year disease free time frame that her original tumor was her 2 negative. 

I read that Strong ER positive when PR is negative is really reallya bad sign since it means she will not respond to Tamoxifen or Arimidex. The ER is 99 % , i was shocked at how high it was thinking what a good response she would have only to just today be told the final path is PR negative and her 2 positive. 

I read one of Doris's post and saw she said she was ER positive and PR negative back in the 90s and shes having and had good responses to hormonal therapy. That gave me some hope. Also reading Cindys posts about her recurrence 20 plus years later and her positive responses gave me even more hope.

Im so scared for her now. She completes two week radiation and is on Faslodex and Arimidex. Now onco wants to start Herceptin. 

For the record my mom was 46 at diagnosis. 

 

Gottahavefaith
Posts: 21
Joined: Oct 2013

Neglected to say that 25 years ago, she was indeed ER and PR positive. 

SIROD's picture
SIROD
Posts: 2189
Joined: Jun 2010

Hi,

It is very good that your mother is 99% ER+ and Her2 Positive as there are a lot of drugs to keep her going for a long, long time.  I am not Her2+, I wish that I was.  I had just turned 47 when I began my journey in 1994.  I used hormonal therapies for 18 years and went on chemo last February.  I do have one hormonal drug left Aromasin but it won't work at this time.  

Faslodex and Arimidex are excellent hormonal drugs.

The fact that she is going to start Hercepin is excellent as it is a targetted therapy.

No one wants a recurrence of breast cancer.   Your mother's indolent disease and the fact that she is ER+ and Her2+ allows her to use a lot of drugs that won't be to debilitating to take.

Wishing her the best and you too,

Doris

 

lbowershlh
Posts: 2
Joined: Oct 2013

I was ER and PR pos 7 years ago. I took tamoxifen for 5 years. I just posted questions about taking bio identical hormones for 4 months now I have been taking them. Now I am hearing horror stories and I don't know what to do. I was desperatto for some relief!!

Gottahavefaith
Posts: 21
Joined: Oct 2013

Thank you Doris for your response and encouragement. wow! You had organ disease too like my mom and have done super well going way back as well. I wish more ladies could hear stories like yours and the other ladies on here. It would give so much encouragement! As I said, apparently though she is ER positive and not PR positive means that according to oncologist that she has a slim chance of responding to receptor blockers ( Faslodex, Tamoxifen) because the ER receptors are essentially nonfunctional in majority of these cases. The aromatase inhibitors are what she has to attack it from a hormonal standpoint ( the receptor functionality doesnt matter with AI therapy).  I think you may be right in saying that being Her 2 is kinda good due to excellent drugs like Herceptin to treat that but not good in other ways. Of concern she has felt great, came off her pain patch and just needing a few pain pills a day! Thats a huge improvement as she had excruciating pain after her fall ( fractured sacrum). How the recurrence was found. Anyway, this am reported feeling a transient numbness to lower leg. I was worried she has spinal cord compromise ( she fractured a vertebrae too with fall). Told her she needs ER and MRI ASAP! Please keep her in all your thoughts and prayers.

CypressCynthia's picture
CypressCynthia
Posts: 4011
Joined: Oct 2009

I was diagnosed way back in 1987 with Stage 3 IDC, ER+, PR+.  Her2 unavailable.  I had a mastectomy, chemo and tamoxifen. I was also premenopausal, but my onc felt strongly about it.  

In 2005 (18 years later), I had a recurrence in my right ribs and lung.  I didn't get a rib biopsy until 2009, which came back ER+, PR neg, Her2 neg.  My onc says bone is often unreliable for her2 +.  I recceived arimidex and zometa-later changed to faslodex and xgeva.  That put bones and lung in remission.

This year I had a recurrence in my liver, ER neg, PR neg, Her2 +.  I received taxotere, herceptin and perjeta.  I am off taxotere now, but will be on herceptin and perjeta until it quits working.  Fingers crossed, it looks like my liver mets is in remission: last PET scan clear (3 mos ago), recent markers normal (for the first time in 5 years).  I am awaiting MRI of liver, but hopeful.  My lungs had some negative changes on that last PET, but onc thinks they are from chemo and I am hopeful he is right.

Good Luck and you are both in my prayers.  Don't give up because we "outliers" (the term for those of us who have a longer life than expected) tend to respond better to treatment. No one really knows why.   

Gottahavefaith
Posts: 21
Joined: Oct 2013

Cindy, thank you for sharing more of your story. Sounds like it parallels my mothers story except my moms oncologist did not want to give Tamoxifen back in the 80s. 

Im going to be praying your markers stay normal and your MRI is clean. Do you think that the bone biopsy was really Her 2 neu positive but got reported as negative because it was bone? Like you, my mom did not have her 2 testing because it wasnt even around then. I was assured by two oncologists that no way was it positive 25 years ago even if we couldnt test it because a Her 2 postive tumor would not wait 25 years to recur (that is if it were to recur). So she went from ER, PR positive and probably her 2 negative to ER positive PR negative and her 2 neu positive. Amazing how those cells change. For lladies like you and Doris and my mom having recurrences in the past 15 years is better than 30 years ago since we have so many drugs to treat and Undoubtedly more on the horizon to turn breast cancer into basically a chronic disease. Ladies years ago didnt have those options.

I go for BRCA testing tomorrow. Ive been told it will be negative most likely but Im still apprehensive. As for your MRI, I have a good feeling It will be ok.  again, sending good vibes to you. Blessings to you And thanks for sharing your story. It inspires hope for me.

Gottahavefaith
Posts: 21
Joined: Oct 2013

Ladies, my mom asked me to ask any of you who got these drugs whether or not you noticed a chemical like smell to your urine. She never had this before and it was 4 to 6 hours after she had got the Faslodex. Not a urinary tract infection. No other urinary or female symptoms from a gyne standpoint. I was kinda embarassed to ask but I figure someone may have experienced this. 

CypressCynthia's picture
CypressCynthia
Posts: 4011
Joined: Oct 2009

I never noticed a urine odor, but a google search reports that some other individuals are complaining about it.  However, I would discuss it with onc.  I am assuming her blood sugar is normal, because she probably gets that checked with her other labs?  Undiagnosed diabetes can cause an odor.

My onc thinks my ribs probably were her2 pos.  That may be right because it is only after the taxotere, herceptin, perjeta cocktail that my markers are normal.  But don't let me jinx myself-I am still waiting on MRI!   I sincerely doubt original cancer was because I doubt I would have had such a long remission.

Big hugs and prayers!

 

Gottahavefaith
Posts: 21
Joined: Oct 2013

You are right Cindy. I did find several ladies talking about foul urine odor after Faslodex On the Komen website! They described it exactly as mom did. A chemical like smell, almost like cat urine. Not all get it, but looks like alot do. Imagine that. Probably has to do with the way some metabolize the drugs vehicle ( what its suspended in).

you are keeping us in suspense on your MRI. I suspect if your markers are normal very little disease will be seen especially if your markers have been reliable in past consistently. We are all pulling for you and by the way the bus is running and we are burning through alot of gas. Soooo hurry up and get those results so we can all go for a dinner and drinks cruise with you! 

blessing and hope to you!

Cricket64
Posts: 63
Joined: Sep 2013

Simply adding prayers.  The cancer journey has so many twists, turns, ups downs, questions, maybe answers, maybe not, let's try this, why not try that....just reading the data, and trying to keep knowledgable is daunting.  But, I can add my prayers.

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