Hi everyone. My Mom (IgG kappa multiple myeloma diagnosed May 2010 at age 70, now 71) has a an ovarian cyst being watched by a gynecologic oncologist with ultrasounds every three months. It has recently increased in size, and the gyn/onco doctor has recommend hysterectomy.
We have read that invasive surgery can "stir" multiple myeloma up - but don't find a lot on this to confirm it on various research. Has anyone else heard this? She will be seeing new oncologist for an opinion on this.
Anyway, do any of you with multiple myeloma (or family with multiple myeloma) have experience with having had surgery or hysterectomy? If so, did you experience an increase in your various multiple myeloma markers or other labs followed (beta 2, FLC, M protein, IgG, calcium, creatinine, hemoglobin, etc.) or a relapse/recurrence?
She has been in remission (partial, in that no bone marrow biopsy has been done, and M protein is still barely detectable) since last October. We want to gather as much information as possible about others experiences with multiple myeloma and surgery.
Your input would be greatly appreciated.
Thank you.
Forums
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Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
Re: Surgery/hysterectomy in patients with multiple myeloma
First let me say i'm so sorry to hear about your mom and her diagnosis of multiple myeloma.
I came across this while on fb...never had even put the two together until reading this...i had a hysterectomy and then 6 months later was diagnosed with multiple myeloma and i'm a female and fairly young only 43....so i'm not sure there is a connection but would be interested in finding out if there is one. Hope that helps.
~ Blessings
Peggy
I came across this while on fb...never had even put the two together until reading this...i had a hysterectomy and then 6 months later was diagnosed with multiple myeloma and i'm a female and fairly young only 43....so i'm not sure there is a connection but would be interested in finding out if there is one. Hope that helps.
~ Blessings
Peggy
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pegsue - Name: Peggy Sue
- When were you/they diagnosed?: Sep. 2010
- Age at diagnosis: 43
Re: Surgery/hysterectomy in patients with multiple myeloma
Oh yes, same with me. I was 42 last year with lots of bleeding and a Hgb of 7.4. My gyno decided it had to be fibroids and did a vaginal hysterectomy. No cutting. In and out in 24 hours. Then 3 months later I end up in the Emergency with pneumonia and aches in all my bones. There was a very good internist on call who recognized the fact that my Hgb was still just 7.0 with no obvious reason. My sore body and frequent pneumonias also gave him all the clues he needed. I was admitted and for twee weeks on oxygen and a battery of tests. Diagnosed 27 march 2010 with stage III, chr depletion 4;14 and mprotein of 120!! My oncologist told me the hysterectomy was done because of the bleeding which of course was due to rock bottom platelets ect. My myeloma caused the heavy bleeding and low blood numbers. According to him off course. Boy this multiple myeloma is an interesting disease. Hope your mom can also get the less invasive vag hysterectomy. Take care. Nita.
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Nitalouw
Re: Surgery/hysterectomy in patients with multiple myeloma
I'm not sure if this will help....but here's my story. Diagnosed at 36 back in 2005... smoldered until Dec of 2009....at which time I went active and needed treatment. Had a hysterectomy Sept of 2009... It would be easy for me to say that the hysterectomy caused my multiple myeloma to go active, but I have lab results dating back to 2005. My multiple myeloma started becoming active in 2008... Not sure if this helps any....but for me I doesn't look like the hysterectomy made a difference.
Best of luck....God Bless
Heres to finding a cure!!
Best of luck....God Bless
Heres to finding a cure!!
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Madaline1969
Re: Surgery/hysterectomy in patients with multiple myeloma
Peggy, Sue, and Madaline, thank you for your responses. I've never read about a connection of having a hysterectomy (or any surgery) and then being diagnosed with multiple myeloma. But, I did read about the thought that surgery can stir up already present and active multiple myeloma (not read this about smoldering?).
Blessings to you all...
I am wondering if any of the multiple myeloma specialists/MDs who frequent this forum might have opinions/feedback or specific experience regarding their multiple myeloma patients having to have surgery for other issues, and whether there is any pattern found that surgery can cause a flare of multiple myeloma that is in partial or complete remission?
Thanks again... I appreciate this forum.
Blessings to you all...
I am wondering if any of the multiple myeloma specialists/MDs who frequent this forum might have opinions/feedback or specific experience regarding their multiple myeloma patients having to have surgery for other issues, and whether there is any pattern found that surgery can cause a flare of multiple myeloma that is in partial or complete remission?
Thanks again... I appreciate this forum.
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Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
Re: Surgery/hysterectomy in patients with multiple myeloma
Greetings from the International Myeloma Workshop in Paris !
This is an interesting question that I can answer quickly for you. There is no data to suggest that surgery causes myeloma to flare or "stirs up" the disease. I would not hesitate to recommend to a myeloma patient that necessary/recommended surgery be performed expeditiously. This would be especially true for a patient who needed to have a potential 2nd cancer removed (your mother's enlarging ovary).
This is an interesting question that I can answer quickly for you. There is no data to suggest that surgery causes myeloma to flare or "stirs up" the disease. I would not hesitate to recommend to a myeloma patient that necessary/recommended surgery be performed expeditiously. This would be especially true for a patient who needed to have a potential 2nd cancer removed (your mother's enlarging ovary).
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Surgery/hysterectomy in patients with multiple myeloma
I was diagnosed in July 2006 at age 50. That fall I had a number of intestinal and abdominal problems. We never did find a cause. I ended up in the hospital several times and while consulting at MD Anderson had a fever spike and they put me through a number of tests to try to determine what was happening. I had a fairly bad abdominal infection with multiple cysts, etc. After antibiotics did not seem to completely remedy the situation, I was scheduled for surgery in May 2007.
They did a complete hysterectomy (abdominally) including removal of ovaries as well as removing my appendix. There were a lot of adhesions (scar tissue) that needed removal. They had a gastro dr. on hand in case they needed to resect the bowels but fortunately that wasn't necessary.
At that time I was in partial remission from treatment with vel/rev/dex in Dec. 2006 and my numbers did not increase markedly. I had an auto SCT in Aug. 2007.
In Feb. 2010 I had more abdominal problems and after several dr. visits and admittance to the hospital they realized I had a perforated colon. I was taken to emergency surgery. (When your hospital room fills with drs. and nurses at midnight, you know it is a serious situation.) Again there was a lot of scar tissue and a couple small hernias. They removed a portion of my colon and I was left with a colostomy.
My numbers did go up during this time but it was due to the fact that I had to stop treatment and not because of the surgery itself.
A big issue with surgery is concern over infections. In my case, the surgeries were needed to deal with infections. I have the option of having my colostomy reversed but with concerns of infection and just having to go through recovering from another surgery I have decided not to.
In your mother's case, it sounds like the surgery should be done. Hopefully they can do it with minimal cutting -- either vaginally or laproscopically. And, hopefully she will have a quick recovery.
Janet
They did a complete hysterectomy (abdominally) including removal of ovaries as well as removing my appendix. There were a lot of adhesions (scar tissue) that needed removal. They had a gastro dr. on hand in case they needed to resect the bowels but fortunately that wasn't necessary.
At that time I was in partial remission from treatment with vel/rev/dex in Dec. 2006 and my numbers did not increase markedly. I had an auto SCT in Aug. 2007.
In Feb. 2010 I had more abdominal problems and after several dr. visits and admittance to the hospital they realized I had a perforated colon. I was taken to emergency surgery. (When your hospital room fills with drs. and nurses at midnight, you know it is a serious situation.) Again there was a lot of scar tissue and a couple small hernias. They removed a portion of my colon and I was left with a colostomy.
My numbers did go up during this time but it was due to the fact that I had to stop treatment and not because of the surgery itself.
A big issue with surgery is concern over infections. In my case, the surgeries were needed to deal with infections. I have the option of having my colostomy reversed but with concerns of infection and just having to go through recovering from another surgery I have decided not to.
In your mother's case, it sounds like the surgery should be done. Hopefully they can do it with minimal cutting -- either vaginally or laproscopically. And, hopefully she will have a quick recovery.
Janet
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jsnow527 - Name: Janet
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2006
- Age at diagnosis: 50
Re: Surgery/hysterectomy in patients with multiple myeloma
Dr. Libby, thank you very much for your reply and reassurance. I am sure when she sees her oncologist, he will echo your response. And, Janet, thank you for description of your experience - it is very helpful to hear and reassuring.
All of the feedback was much appreciated!
All of the feedback was much appreciated!
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Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
Re: Surgery/hysterectomy in patients with multiple myeloma
I had a hyserectomy and one year later was diagnosed with multiple myeloma. I was only 49 at the time. I always felt there might have been a connection as I had always been very healthy. However, I had an apendicitist last year and was found to be in remission just a few months after this.
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Anonymous
Re: Surgery/hysterectomy in patients with multiple myeloma
Dx 2007 had SCT and on Revlimid. Had VGPR. Had 2 total knee replacements. First in June, 2009 second in May, 2010. My numbers remained stable through both.
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