Recurrence stories

Fridays Child

Not Kaleena, but my experience

Armywife, the pain I had was in the hip joint and low on the left side of the abdomen. As noted above, the CT scan was negative. Sometimes it was uncomfortable to have even something as thin as a grocery receipt in the left pocket if I sat down. Most of the time if I was up moving it was fine.  Sitting and lying down were uncomfortable.  And most of the time the pain was minor and not something I thought much about. 

Occasionally it bothered me at night and I couldn't get comfortable.  One night it literally kept me awake all night.  I got up very early and went to walk and it got better and didn't bother me the rest of the day.  I had a regular appointment right after that with my gyn (having been released from the gyn oncologist) and we decided I should go to ortho.  He's the one who rodered the scan that revealed the mass.

I hope you never have the same experience!

oldbeauty

Fridays Child said:

Not Kaleena, but my experience

Armywife, the pain I had was in the hip joint and low on the left side of the abdomen. As noted above, the CT scan was negative. Sometimes it was uncomfortable to have even something as thin as a grocery receipt in the left pocket if I sat down. Most of the time if I was up moving it was fine.  Sitting and lying down were uncomfortable.  And most of the time the pain was minor and not something I thought much about. 

Occasionally it bothered me at night and I couldn't get comfortable.  One night it literally kept me awake all night.  I got up very early and went to walk and it got better and didn't bother me the rest of the day.  I had a regular appointment right after that with my gyn (having been released from the gyn oncologist) and we decided I should go to ortho.  He's the one who rodered the scan that revealed the mass.

I hope you never have the same experience!

Curious...

Friday's Child, did the ortho order a CT or an MRI or something else?  Best wishes, Oldbeauty

Fridays Child

oldbeauty

Oldbeauty, the ortho ordered an MRI which showed the pelvic mass and suspicion of bone involvement.  Regular x-rays had not shown anything but because of the pain he thought we needed more information.

oldbeauty

Fridays Child said:

oldbeauty

Oldbeauty, the ortho ordered an MRI which showed the pelvic mass and suspicion of bone involvement.  Regular x-rays had not shown anything but because of the pain he thought we needed more information.

Thanks

Thanks for the info.  Best wishes, Oldbeauty. 

Kaleena

Armywife said:

Kaleena - pain

Can you tell me what the pain was like?  Where it was?  I'm trying to be vigilant about symptoms, as my gyn/onc said that symptoms appear just as soon as something would be found on a scan.  I didn't have any pain or symptoms with my first diagnosis, so I'm not sure what to look for!

Pain

My initial pain (prior to diagnosis) was like someone wringing out my insides.  I was also getting sciatic painlike symptoms.  Like twisting a towel.   My recurrence pain were all in my left buttocks near the anal opening.   Due to my extensive scarring from all my operations, I do have a high tolerance to pain.  My husband would ask me if I was in pain when he saw my face.  I didn't realize I was in pain until I took a Motrin.  I would get real run down, heavy eyes, and then realized I was in pain.  Its really hard to describe to doctors.  But on a normal basis, I don't take any medicines. and then when I started needing a motrin a couple times a week, to almost everyday and then finally everyday that I knew something was wrong.  Most of my scans were good.  I did have some soft tissue masses which they weren't concerned about and one which was PET low positive but stayed stable for most part.   But once I started getting pain, they did another biopsy and got a positive result which then I had surgery to remove it.

Currently, I am back to the no medications.

Mercorby

2 recurrences

Stage 1b, Grade 3  ER+ PR+ HER2-  I didn't feel or have any signs of the recurrences before the scans found them.

I had one recurrence a year and a half after the hysterectomy. Then, I had a combo of radiation and chemo. Then they put me on an aromatase inhibitor.  Six months after chemo. I had another recurrence on my stomach muscle near the scar, so I had radiation and they added Ibrance to the aromatase inhibitor.  Naturally, I've been nervous about recurrence.  Both my gyn and hemo oncs agreed that I can continue with 6 month scans and 3 month gyn exams indefinitely.  I also see the hemo onc each month when I get my blood tests and port flushed.

What I have read is that the highest chance of a recurrence is within 3 years of the first diagnosis.  Therefore, I would ask for scans and visits at regualr intervals.

ConnieSW

Mercorby said:

2 recurrences

Stage 1b, Grade 3  ER+ PR+ HER2-  I didn't feel or have any signs of the recurrences before the scans found them.

I had one recurrence a year and a half after the hysterectomy. Then, I had a combo of radiation and chemo. Then they put me on an aromatase inhibitor.  Six months after chemo. I had another recurrence on my stomach muscle near the scar, so I had radiation and they added Ibrance to the aromatase inhibitor.  Naturally, I've been nervous about recurrence.  Both my gyn and hemo oncs agreed that I can continue with 6 month scans and 3 month gyn exams indefinitely.  I also see the hemo onc each month when I get my blood tests and port flushed.

What I have read is that the highest chance of a recurrence is within 3 years of the first diagnosis.  Therefore, I would ask for scans and visits at regualr intervals.

Warrior Mermaid,

I read your CSN my space and liked and admired what you had to say. Thank you. 

jan9wils

There is still hope! There is

There is still hope! There is always hope!  I had a wedge resection to my lung in Oct 2107. Did the six rounds of doxy/paciltaxal. Afterwards I felt good. Went back to work as a substitute teacher, babysat my granddaughter for 8 months until my daughter got pregnant again and decided to stay home for a couple of years. I enjoyed hiking and kayaking, swimming and vacationing a bit. I remained NED  until this past April. I had pain with recurrences to my abdominal muscles and peritoneum. The pain I had was like sciatica and some local pain on the abdominal muscle. I'm on pain meds which are a blessing for me. Kddbrad, you've got this! I never had a long remission like you have had so I think you will have a good long remission after this treatment. BTW, the chemo was to pick up any small bits of cancer that may have been floating around in my body. Once the lung resection was done there were no measurable tumors but my doctors don't like to say "they got it all" when you've recurred.

BluebirdOne

Pain in my neck?

I woke up this morning with what I thought was a stiff neck As the day progressed I felt around and found an extremely tender spot just above my collar bone. It seemed a bit hard, but also was very sensitive to being palpated It is also warm to the touch. In the past month I have had a pain in the soft tissue next to my left hip bone, on and off. It is a dull ache, every day, but not constant. I suffer from osteoarthritis in my spine, hands wrists, knees for 25 years, so I have had pain in the hip and back area for many years. My greatest fear is the osteoarthritis pain masks any cancer pain. I contacted my oncologi and will probably have to go in for scans and exams. Not my idea of a good time at Christmas when I was looking forward to spending time with my granddaughter and family I am scared to death, but like Donna Faye, I want to keep this news secret until after Christma. Hope it is nothing. 

 

Denise 

Donna Faye

Keeping silent is hard

Dear Bluebird, I know how you are feeling. I have been reading and researching during this waiting time. It is hard to remain silent until January, but I know it is best. My children are trying to plan an 80th BD party for me in April and I am trying to ignore their requests for a date. I also know how hard it is to have something that pains or is suspect and having to wait on exams and scans. No matter how many times we go through this, the waiting is hardest. Patience has never been my best trait, but I am learning. I am wishing for you a NED report. Hugs, DF

zsazsa1

BluebirdOne said:

Pain in my neck?

I woke up this morning with what I thought was a stiff neck As the day progressed I felt around and found an extremely tender spot just above my collar bone. It seemed a bit hard, but also was very sensitive to being palpated It is also warm to the touch. In the past month I have had a pain in the soft tissue next to my left hip bone, on and off. It is a dull ache, every day, but not constant. I suffer from osteoarthritis in my spine, hands wrists, knees for 25 years, so I have had pain in the hip and back area for many years. My greatest fear is the osteoarthritis pain masks any cancer pain. I contacted my oncologi and will probably have to go in for scans and exams. Not my idea of a good time at Christmas when I was looking forward to spending time with my granddaughter and family I am scared to death, but like Donna Faye, I want to keep this news secret until after Christma. Hope it is nothing. 

 

Denise 

I hope it is nothing, too. 

I hope it is nothing, too.  From your history, which was UPSC 1a, with chemo and brachy, odds are definitely in your favor that you won't recur.  Which side is the node on?  Your left, or your right?  Virchow's node, which is a sentinel node for the chest, is on the left, in the supraclavicular area.  Also, usually, cancer nodes are very hard, like rock hard, and not tender, and not warm. Warm, tender nodes are more likely to be from infection.

BluebirdOne

zsazsa1 said:

I hope it is nothing, too. 

I hope it is nothing, too.  From your history, which was UPSC 1a, with chemo and brachy, odds are definitely in your favor that you won't recur.  Which side is the node on?  Your left, or your right?  Virchow's node, which is a sentinel node for the chest, is on the left, in the supraclavicular area.  Also, usually, cancer nodes are very hard, like rock hard, and not tender, and not warm. Warm, tender nodes are more likely to be from infection.

Thanks, ZsaZsaI will know more on Monday

The sore spot is on the left, right above the collar bone. My next door neighbor is an RN so I had her look at it because I don’t know what that area feels like normally. She was concerned and confirmed the need to have it looked at. The hip/abdomen pain is also troubling. I will find out more on Monday, but they said I will probably have to have a scan and a checkup. I am NED 14 months, so hopefully that will continue. 

Denise

CheeseQueen57

BluebirdOne said:

Pain in my neck?

I woke up this morning with what I thought was a stiff neck As the day progressed I felt around and found an extremely tender spot just above my collar bone. It seemed a bit hard, but also was very sensitive to being palpated It is also warm to the touch. In the past month I have had a pain in the soft tissue next to my left hip bone, on and off. It is a dull ache, every day, but not constant. I suffer from osteoarthritis in my spine, hands wrists, knees for 25 years, so I have had pain in the hip and back area for many years. My greatest fear is the osteoarthritis pain masks any cancer pain. I contacted my oncologi and will probably have to go in for scans and exams. Not my idea of a good time at Christmas when I was looking forward to spending time with my granddaughter and family I am scared to death, but like Donna Faye, I want to keep this news secret until after Christma. Hope it is nothing. 

 

Denise 

Is it necessary?

Is it really necessary to get this checked out before the holidays?  Will it make any difference at all?  I would try to enjoy the holidays and deal with this right after. 

BluebirdOne

CheeseQueen57 said:

Is it necessary?

Is it really necessary to get this checked out before the holidays?  Will it make any difference at all?  I would try to enjoy the holidays and deal with this right after. 

I haven’t spoken to my oncologist

yet, just her staff to figure what they want me to do. I am concerned that this is holiday time and might not get an appointment, regardless. Or the B ream will be in charge. At any rate we will figure it out. 

Denise

BluebirdOne

Thanks, Donna Faye!

Thanks. 

SF73

BluebirdOne said:

I haven’t spoken to my oncologist

yet, just her staff to figure what they want me to do. I am concerned that this is holiday time and might not get an appointment, regardless. Or the B ream will be in charge. At any rate we will figure it out. 

Denise

Best of luck, Denise! I am

Best of luck, Denise! I am hoping that it is nothing. So glad that you are getting it checked as soon as possible. 

Forherself

BluebirdOne said:

Thanks, ZsaZsaI will know more on Monday

The sore spot is on the left, right above the collar bone. My next door neighbor is an RN so I had her look at it because I don’t know what that area feels like normally. She was concerned and confirmed the need to have it looked at. The hip/abdomen pain is also troubling. I will find out more on Monday, but they said I will probably have to have a scan and a checkup. I am NED 14 months, so hopefully that will continue. 

Denise

hi Bluebird

Praying for clear scans.   I had severe back pain in September.  I was diagnosed the same time you were.  1A.  So of course everyone wonders about a cancer recurrence.   Even though I have spondylolithsesis.   I had surgery on my back in October.  It was not a recurrence.   Everything is worrisome now.  But I agree with zsa zsa it sounds more like infection in your node.  I understand too not wanting to talk to family about this.  Tlk to us if you need to talk.   Enjoy your holidays.  I would want to find out myself though.  I too, would choose to have the scans as soon as I could.

 

BluebirdOne

SF73 said:

Best of luck, Denise! I am

Best of luck, Denise! I am hoping that it is nothing. So glad that you are getting it checked as soon as possible. 

Thanks so much, SF73

I will know tomorrow what they want me to do. My next scheduled appointment is Feb 3, so they thought they might want to move it up. Just a question of what they want me to do and when. My neck continues to be tender, but I have no symptoms of infection like a cold or flu, no fever. My heart rate usually is a good “tell” for getting sick. It is normally in the 40’s so I check it often, but now is in the low seventies. When I have had flu before it can get  to be 120. So it seems like there is something there. Just hoping this doesn’t screw up our Christmas plans. 

 

Denise

BluebirdOne

Fridays Child said:

Best of luck

Been there, done that.   My recurrence was diagnosed via MRI the week after Christmas two years ago.  My husband knew but we didn't mention it to the kids until after the first of the year.  I hope and pray yours is something other than a recurrence!

Thanks, Friday’s Child.

That must have been so hard for you because you must have had symptoms just before Christmas. I am so sorry you recurred. This is a sucky time of year for any of this stuff. On one hand if it is something it is better to know what you are dealing with sooner rather than later. On the other hand I would be very happy to just to stick my head in the sand and   go along my merry way. We will know more tomorrow what they want me to do. I appreciate your support.

Denise

BluebirdOne

Forherself said:

hi Bluebird

Praying for clear scans.   I had severe back pain in September.  I was diagnosed the same time you were.  1A.  So of course everyone wonders about a cancer recurrence.   Even though I have spondylolithsesis.   I had surgery on my back in October.  It was not a recurrence.   Everything is worrisome now.  But I agree with zsa zsa it sounds more like infection in your node.  I understand too not wanting to talk to family about this.  Tlk to us if you need to talk.   Enjoy your holidays.  I would want to find out myself though.  I too, would choose to have the scans as soon as I could.

 

Thanks, Forherself

Sorry you had to have back surgery after all you have been through. I have had osteoarthritis in my spine for many years so it is always worrisome that the pain from that masks any cancer pain. My father in law died of lung cancer after he ignored the symptoms thinking the pain was just his old bad back. I will listen to what the docs have to say, of course. Half of me is extremely worried, the other half is thinking it is all just nothing so I am being alarmed at nothing. The LVSI I had is also worrisome. i will know more tomorrow. I really appreciate your concern. 

Denise