Recurrence stories

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, 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.

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!

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 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.

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

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.  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 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 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 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

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.