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Are there symptoms before a recurrance of

namedropper
Posts: 102
Joined: Dec 2014

Hi again. I was dx with MMMT uterine cancer in JUNE 2014 and go for my 2nd CT scan after surgery  on Feb. 9th of 2015. I am grade 3 stage 2. I had taxol/carbo and internal radiation.  Did anyone have any pain or funny feeling in the pelvic and stomach area before a recurrance.  The waiting is terrible. I am positive but I have had a little pain at times. I am a real fighter but they don't seem to know to much about MMMT even at the Cleveland Clinic.  They have only seen a few cases because it is rare.   Thanks

 

AWK
Posts: 364
Joined: Mar 2013

Hi Namedropper!  I was dx in April 2013 with Stage IIIC UPSC; underwent surgery and had all of the ladyparts and pelvic lymph nodes removed.  Then underwent six rounds of carbo/taxol, 28 radiation and three brachytherapy.  Going into my first three month checkup I felt great.  I had some pain in my lower abdomen but it was attributed to the recovery from all of the treatments.  Shooting pains infrequently and a little bloating.  But overall I felt great and had returned to work.  At the first check up CT scans revealed two mets; a follow up PET scan picked up a total of five - all spread out and adjacent to organs including the largest one on my heart.  My blood pressure remained low and other tests were normal, CA 125 was in the range it had been in for six months.  I was shocked as were the docs.  All of the spreading was outside of both the surgical field and radiation field.  None are operable nor radiatable.  The symptoms I had were truly related to recovery from the surgery.  Second opinion has me at stage IVA.  

I look look back now and am so glad I went into it not too worried about recurrence or in my case progression.  One thing this fight is teaching me is to live more in the moment and try not to worry about things unless I have a reason to.  It's hard but taking things one day at a time makes it easier for me.  I continue in treatment, first on Doxil (progression continued) now Avastin and I am stable.  No new growth, no shrinkage.  And that is fine for now while we figure out a plan of attack.  I am always nervous about sharing my story because I don't want to scare anyone but I recognize how important it was for me when others reached out.  I am feeling great these days, working full time and doing things I love.  

I am am being treated at the Leavey Cancer Center (affiliation is with UCLA/Cedars) in the Los Angeles area; they have a team consulting on my case from MD Anderson, Dana Farber, Sloan Kettering and the City of Hope as well as NIH.  

Be well, stay busy and focus on the good things happening to you if you can.  I have had, and continue to have, amazing experiences because of my cancer and I never want to lose sight of that.  And reach out, you are never alone here.  Stay Strong and Thrive.  Keeping you in my prayers.  Anne

molimoli
Posts: 514
Joined: Aug 2014

Thanks AWK  for sharing, we crave the info ,gives us valuable insight so we can brace ourselves or plan and prepare. No one likes to be blindsides,  preparation is the only way to keep sanity with this devil . Thanks to all that are willing to share.

namedropper
Posts: 102
Joined: Dec 2014

Thanks for your support. I will hang in there.

Hybridspirits's picture
Hybridspirits
Posts: 209
Joined: Nov 2012

is this just a routine scan?  scan of the abdomen, pelvis and a chest xray?  I am assuming you get routine internal exams with your gyno/oncologist?  my oncologist wants to hear about anything but shares that pains in the stomach isn't always pointing to recurrence but wants to know about it.  It is so hard for us to manage these pains where as someone without cancer wouldn't think twice about it. 

i am curious if others found out about a recurrence from something other than the scans as that was what i was led to believe was the first line review.

I have had abdominal pain and even pelvic pain since my surgery 12/12/12 and treatment (ending 5/2013, chemo and internal).  but they were unrelated to a recurrence.

I agree the waiting for the tests and then the results are so stressful. 

 

namedropper
Posts: 102
Joined: Dec 2014

This is my second routine scan after my surgery..  I have been getting little pains in my lower pelvic area. It feels like a big pin going in. It doesn't last long. It might just be that I am getting back to doing more lifting.  I will know soon enough.

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

I was diagnosed in Jan 2014, UPSC Stage IVB, but was NED at the end of treatment in July.  Then the weekend after Thanksgiving I ended up with a swollen gland in my groin area that freaked me out.  Called me oncologist and she moved my CT Scan up from Jan. to immediately and we found enlarged lymph nodes that a PET Scan showed as malignant.  Had nothing to do with the swollen gland which quickly regressed.  But as a result of the early CT Scan we found the englarged nodes and started treatment immediately.  My doctor said there is no way I would have felt the nodes, we just got lucky.  You are right, waiting is stressful.   I try hard to just stay busy and stay in the moment.  You can too!  Hugs! - Helen

namedropper
Posts: 102
Joined: Dec 2014

Thanks for the hugs. I will try to stay busy until Feb.9th.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2715
Joined: Mar 2013

namedropper, I think all of us fear every thing is a sign of a recurrence, but try to slow down.  Call your gyn onc and tell them what you are experiencing and that you are nervous.  I bet they have heard this before.  Doctors can reach out to other doctors for advice. 

Try not to get too far ahead of yourself right now.  Call the office and let us know what they say.

namedropper
Posts: 102
Joined: Dec 2014

I will wait until the next scan on Feb. 9th. I then see the Dr. on the 10th.   Thanks

nempark
Posts: 683
Joined: Apr 2010

dx 2009 stage 1a3. total hyst. I had pelvic pains and leg pains since.  Had scans and nothing showed.  Just this Friday I had a spotting hope it is just normal waiting to get to a Doctor since I have moved last september.  My reg onc called and I explained and he said dosen't think it's anything but still need to see Doc to be sure. I am hoping to develop the same attitude as these two awesome ladies, AWK and Moli.  I love them.

Your funny feelings and pains could be normal.  I don't think that MMMT is really rare anymore.

pinky104
Posts: 574
Joined: Feb 2013

I had stage IVb UPSC in May, 2010.  I've had many pains since then.  They were bad this spring, so my family doctor's office ordered a CT scan.  A mass was found, so I was sent for a PET scan, which showed the same thing.  My gyn/onc wasn't sure what it was, so I had two more scans three months apart.  The last time I went, he told me it hadn't grown, so he didn't even think it's cancer.  I have to go back in June for more labs and a CT scan just for one final check, then he's going to be sure it's nothing.  There's a possiblility it could just be a fluid collection from lymph node removal.

There are tons of things that can cause abdominal pain.  My pain wasn't even located where my mass is.  The PA at my family doctor finally told me that the pain I had in my left side could be from constipation, with a build-up of stool at the bend in my intestine.  I told him I'd pay attention to whether or not I've been constipated the next time I get it. You could have other things causing abdominal pain like stones, a UTI, or gastritis so don't automatically assume it's the cancer coming back.  It might be, but it also might not.  It could even be caused by worrying about it.

I know we all worry about a recurrence.  It's normal to do that.  Don't drive yourself crazy, just go by what the doctor tells you when you get there.  After a few years, you'll be a little more reassured that it's not coming back, but you'll always worry a little.

I hope yours is nothing. 

namedropper
Posts: 102
Joined: Dec 2014

Thanks for your quick responces.   I have had a change in one of my meds and it might contain Gluten ot Lactose. I can't have both of these.  The other pain that comes and goes might be from lifting to much.  I will find out soon enough when I get my ct scan. It showed a fat pad on the last one that they are watching. The fat pad was not on the ct scan after my surgery.   thanks.  I am keeping positive.  

Linda1234
Posts: 11
Joined: Jan 2013

My Mom was diagnosed with MMMT in Oct 2012 following a laporoscopic robotic hysterectomy that morcellated the tumor. After 33 rounds of external/internal chemo and 6 rounds of chemotherapy, she has been clear for nearly 2 years. However, over the last month she had been extremely fatigued and her stomach extended. She also had stomach pains. Her one year PET Scan was scheduled in March but she moved it up a month due to these symptoms. Today we found out the CT-PET Scan shows the tumor has returned. We are located in Southeast Florida, and hope the doctors here will make the best decisions to treat this very rare and aggressive cancer. Mom thought we had dealt with this and could move on, but always looking over her shoulder. Has anyone else out there had such a recurrence? The doctors say it will likely be chemo and surgery to remove the mass. Do you know of what type of chemo or other treatment has proven most effective to treat recurrence? Thank you to those that have been NED for years for all advice to deal with this!

flyerette65
Posts: 65
Joined: Oct 2014

Hello namedropper,

I took have had pelvic pain, felt like menstrual cramps and I was also having severe sciatica.  I finally went for physical therapy (after 2 years of back pain) and the physical therapist, after checking me out thoroughly, told me she thought I had issues with the pelvic floor as well so I've been doing pelvic floor therapy once a week and it has helped a lot. The pelvic floor specialist also told me when I am really stressed (and I have been lately for a lot of different reasons) and she can tell simply from looking at my face, it makes everthing inside clinch up too.  She said tight jaw, tight floor and it's been scientifically proven. She gave me exercises to relaw my face and when I feel myself clinching my jaw I just open my mouth and try to relax my facial muscles as much as possible.  The therapist also gave me very specific exercises to try to relax the internal muscles.  After 2 months of therapy I am feeling so much better! I know what you mean about scanxiety, we who have had cancer all feel that way! Just try to relax as much as possible (easier said than done) and put your faith in God. I think we all worry about a recurrence, being stage 3A with USPC and positive abdominal wash, I feel like it's a matter of when not if. Not being pessimistic but realistic. I have been so extremely tired for the past 3-4 months but have also had tons of stress, a failing marriage, a terminally ill mother who is now under Hospice care, she has about 50-60 mini strokes a day but always comes out of it, and unspecified bleeding for which I had cystoscopy under anesthesia and bladder biopsies, which were negative. My urologist and oncologist assure me that they see no new cancer in the pelvic region but I haven't been this exhausted since chemo. I guess it's just from dealing with life! I wish you well with your scan, just try to stay positive! Also leg pain can be caused by having weak pelvic muscles, I was having intense leg pain but it has gone away as well. It's not just Kegels but other exercises too that we ladies with no uteri (uterouses??)  need to do (I made a poem, lol).

Barb

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I hope you get good results from your scan.  I have had three recurrences and have never had any symptoms.  The recurrences have always been found with increased growth on the CAT scans.  My CA-125 always increases when I go off chemo.  Then the observation continues until the CaT scan shows an increase in the size if lymph nodes.  Luckily my recurrences have always stayed in the lymph nodes.

i hope your sca comes back clear.  In peace and caring.

kumar
Posts: 109
Joined: Aug 2009

RO10,

 

I love you lot.... I do remember we met 6 yrs ago in 2009.. I hope you are ok.

 

Dear Any cancer can reccuer any time.

 

My mom cancer reccure after 5 yrs in her lung....

So its best to do eat healthy diet.

 

Her Ca125 was only 5.9.. that time..

 

Please do scan anually.

 

Thanks Kumar

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I have had three recurrences since my initial diagnosis.  I have had 3 different rounds of chemo.  I am able to still receive taxol/ and cis platinum.  In the fall I had 10  stereotactic radiation treatments ( like cyber knife) to a lymph node near the trachea.  It was easier on the body than chemo would have been.  Unfortunately now a lymph node in the abdomen is increasing in size.  So I know chemo is in the future.  I will have another CAT scan in April to see how the lymph node is responding to the radiation treatments, as well as see if the abdominal lymph node has grown.

I am sorry that your Mom's Cancer recurred in the lung.  Did she get more chemo?  I hope her breathing is okay and she is not in pain.  With her CA-125 only 5.9 that is not a good indicator for her.  My Ca-125 has been as high as 1700 and 3200 when I went back in chemo.  Before I had the radiation it was 1500.   So my marker increases, but does not mean I need chemo yet.  Right now my marker is 600' and I am sill in observation.  The CAT scan will indicate when I  need chemo again.  I have ever had any symptoms when I go back on chemo.  

My only problem is the intense radiation I had has give me " radiation pneumonitis", which has given me a frequent harsh non productive cough.  I have just finished my second round of steroids.  I am hoping the cough does not return.  It is much better since I have been taking the steroids.  I only take cough syrup at bedtime.  Which is much better than itaking cough syrup every four hours

My husband and I have done much traveling since my diagnosis and have seen many beautiful places.  I try to find joy in each day, and live life to the fullest.  I am thankful for the support and prayers from family and friends.  I pray for all who have Cancer as well as their caregivers.  I know it has to be as hard for the caregivers, as those with cancer.  We all need the strength and courage to face what is ahead.

Your Mom is lucky to have you for support.  I hope you are doing okay, too.  In peace and caring.

kumar
Posts: 109
Joined: Aug 2009

You are best and look after your self

flyerette65
Posts: 65
Joined: Oct 2014

RO10 you are always so positive, and I thank you for that! When I was first diagnosed back in 2011 I got on the discussion board for USPC and it depressed me so badly I thought I may as well go order my headstone, I didn't revisit the board for a long time and everyone on here  now has such a positive attitude, even in the midst of several recurrences. I'm very fortunate,  I've been doing well, even though diagnosed 3A, Grade 4, with positive abdominal wash but no cancer in the 39 lymph nodes that were removed. 3 years and 9 months from my diagnosis and so far, so good. Please refresh my memory. What stage were you when you were diagnosed?  My CA125 was 87 when I was diagnosed, after the last chemo it was 4.  My oncologist doesn't do CA125 testing on me anymore because he says it's not a good indicator for me. I have to say it worries me a little but I just have to keep the faith. I'm currently dealing with the end stage of my mom's terminal lobular carcinoma, breast in 2001, mets small intestine 2013. The people working for Hospice are so compassionate, I wish I would have called them in sooner for mom. In talking with the nurses that visit mom, it has increased my faith in God and makes me realize death is not to be something we fear, He will be with us to help us and will provide what we need to help us pass into eternity.  God bless all of you ladies (and men too) on these discussion boards. May He always hold each and everyone of us in the palm of His hand.

Barb

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am glad you are doing okay.  I am glad your Mom has hospice involved, and that it is helping you,too.  Hospice is a wonderful service.  Thank you for yheblessings.  We all need them.

To answer your question I was diagnosed with UPSC stage 3-C.  I had 5 of 25 lymph nodes that were positive, as well as a positive abdominal wash. 

I hope you continue to do well and have peace with your Mom.  In peace and caring.

namedropper
Posts: 102
Joined: Dec 2014

I got a clear CT scan today. My surgery was June 23rd 2014.  I will get another one the end May 2015.  Thanks to  all of you for your support and hugs and prayers.  I will keep everyone updated.

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