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USPC - Mass Found in Supraclavlcular Area - CT Scan Reads Like Death Sentence

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Hello Every. As most of you know, I'm rarely on here unless I need something. I wish I had the time to read and respond to every post, because I get so much information, encouragement and comfort from reading all the posts.

I have been NED from USPC since Jan, 2011 and have felt really good, except some cramps like I used to feel before my hysterectomy (dr says that it is normal?) Had a full body CT scan in July and everything was clear. But, in early Dec, I went to my family doctor because of pain in my left neck, ear, headache, pain in left arm & it looked like my vein was popping out of my neck. Frankly, I thought it was stress because of my work schedule, concert schedule, daughter due with 5th baby & I promised I'd be there to help with the kids, etc. Actually thought I popped a vein by singing so much. I slept great, but the minute I would wake up & think of all the stuff I had to do, my pain would start again. My doctor could see the swelling and feel the swelling so she sent me for an ultrasound. It was clear. She gave me muscle relaxers, pain killers & a steroid shot. I felt pretty good for about 2 weeks. The 2nd week of Dec. I decided to go to my oncologist, who said it doesn't sound like any recurrence of USPC he's ever dealt with before, but to come in. He also felt the swelling, but couldn't determine specifically what he was dealing with so he sent me for a Head/Neck, Lung CT scan immediately that same day (He wanted to know if anything was lurking around in there).

Well the results came back and there was a lot lurking around in there. Reading the results, scared me to death and I'm going crazy as we 'wait' to see what is going on (Christmas & New Years Holidays seem to put everything on hold). I have a 3.5 x 4 cm mass in my left supraclavicular, highly suspicious for metastisis. I have new lung nodules, 1 cm, .5 cm & several smaller in size & a brain nodular 1 cm., all likely metastic.
I had a needle biopsy on the mass and it came back negative (That's great, isn't it?). But I go Friday for out-patient surgury so they can cut out a piece of the mass for another biobsy. As far as the other nodules, my oncologist won't determine treatment until he knows what's going on in that mass. I guess that's a good strategy, right? He also made a comment that USPC does not normally mastasticise to the brain, so he's not sure it's from my original cancer.

So my questions are, if it is USPC, how fast does this stuff spread? Is there a pattern that it normally follows? How do they determine if small nodules in the lungs and brain are cancerous? Do all these places respond successfully to treatment? Is it even curable? How do they determine progress - Scan after Scan, after Scan? Shouldn't there be some sort of urgency to get this diagnosed and treated? At what point should I seek a 2nd opinion? I've always been so trusting of my doctors, but this seems to be dragging on.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

My story is similar. I was NED from upsc for about a year after initial treatment. My scans always had a suspicious area in my left neck that they "watched". Well I found the lump there, was referred to ENT by my gyn-onc and had biopsy. Total lymph node was removed but it was upsc!!.

My doc and I decided to watch it. for the next 4 months I went on plant based diet and took supplements prescribed by an alternative practitioner. A PET scan in Sept showed it was still there and my onc conferred with rad-onc and recommended a combination of chemo (carboplatin weekly for 7 weeks) and radiation (daily tomo for 35 days). They said combo was "synergistic". PET scan in Dec showed Treatment was successful. I've been NED over a year and scheduled for next PET soon (I admit I'm nervous).

So bottom line. Please don't think death sentence!!!! Discuss this regime with your doctors. I worked the first 4 weeks of my recurrence treatment then went on FMLA. I highly recommend that you lower your work and stress load - while my gyn-onc usually discounts the value of diet he totally believes that stress is detrimental. You talk of lot of stress.

I applied for SS disability and got approved in 2.5 weeks. I retired from FT work and now work just a few hours a week in private practice. I do think the lower stress has contributed to NED (my experiment since I worked throughout initial treatment until recurrence). One thing I do know is that WORK did not help my health. I theorize that not working is helping. FYI, people on SSDI can earn $1000 a month.

UPSC is sneaky and obviously fast growing. My onc told me that any symptom lasting 2 weeks needs to be brought to HIS attention. Advice for the future. Please try to stay calm and with the right tests and treatment I think you will respond very well. Another thing. If lung nodes are also cancerous, I would insist that they do brain scans in future. I have inquired about brain scans but doc said they aren't necessary unless there is spread to lungs. Again, I'm not trying to scare - just inform.

Question: What has your CA125 been doing during this time? Mine is a good marker and my doc monitors trends and when it starts doubling he gets into treatment mode. I also get an HE4 blood test along with CA125 - another thing to discuss with your doc.

I remember I was a lunatic with anxiety when recurrence first discovered. Like me, you will get through this and get back to NED. If you want to talk via email my address is m.elder@yahoo.com.

HUGS to you. Mary Ann

soromer
Posts: 130
Joined: Mar 2011

Dear Mary Ann,

I agree with a lot of what you wrote to Bonnie. But I would encourage you to check into the income restrictions for people collecting SSDI. They're lower once you qualify than they are when you are in the application process. It's something like $720/month. (Ridiculous, I know.)

Good luck!

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Thanks Mary Ann for sharing your experience. I already feel better. My CA125 did jump from 9 - 29, but my gyn-onc says that my CA125 has never been a very good marker because it jumps between those numbers even when I have a cold.
How hard is it to go to a totally plant based diet. I can't even imagine. As far as work,
I have really good medical & leave benefits, so I continue to stay on full time for the medical insurance. Both my husband are too young for Medicare. Only a couple of years to go. My husband is retired since last year (got tired of being laid off)so our income was drastically reduced. We're working on getting our bills paid off too. Anyway, reading your story made me feel more positive. Don't be surprise if I do send an email. I go for my appointment with my ENT concerning the surgery I'll have on Friday. He said he wants a slice of the mass, but never said anything about the lymph node. I'll ask him about it tomorrow. Did your doctor do a needle biopsy or go straight with surgery? Anyway, thanks again & I'll keep in touch. Bonnie

soromer
Posts: 130
Joined: Mar 2011

Easy for me to say, of course, since I'm not you and I don't have the same kind of uterine cancer. Waiting is totally the pits, and I do empathize.
You do have a lot to face, potentially. But when you have your biopsy, perhaps you can get them to do a live-tissue chemosensitivity response assay to test which chemo options would be most effective. I definitely wish I had had the opportunity to do that myself.
Metastatic nodes can and do respond to treatment. I will hope that if yours are indeed cancer, that you have a good response to whatever remedy you choose next.
Like Mary Ann, I also encourage you to think about stepping down your responsibilities to see if you can reduce your stress level. It's most important for you to be alive, no? What can you let go of to give yourself more time and rest to heal?

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

with your advice about tissue assay!!! It will help ID best chemo.

I requested this with my lymph biopsy but there was not enough tissue to sample then. I did have after initial surgery though. It always amazes me that more of us don't get this routinely.

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Where was your lymph biopsy. You are right - If I hadn't read everyone's post today, I would have never even heard of the tissue assay???? Thanks for responding. Bonnie

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

I'll ask my ENT about the live-tissue chemosensitivity response assay. I never heard that. I did respond well with my initial treatment for USPC. As far as the job, I would love to step down. Unfortuantely, I don't think I can do that, but I can take advantage of LOA.

What kind of cancer did or do you have? How are you doing? Bonnie

Sally-r
Posts: 8
Joined: Dec 2011

Hi,
My mom was recently diagnosed with UPSC and will be undergoing Chemo and Rad. Did you do any treatment after your hysterectomy?

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Sorry I just saw your question about my lymph biopsy. It was the supraclavicular lymph node - it showed UPSC.

MA

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