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Unknown Primary

Sunshine60
Posts: 75
Joined: Apr 2013

my husbands pathology from his tonsillectomy came back and it was negative.  So, we have joined the rest of you that have a dx of "unknown primary". I understand the radiation field will be a bit different but was told the amount will be pretty much the same  - 6 wks.  I don't know if this includes any chemo- we will meet with our oncology team on the 8th.  I know we can get through this- you all are such an inspiration to us.  Prayers and positive vibes welcome:)

phrannie51's picture
phrannie51
Posts: 3791
Joined: Mar 2012

those here with unknown primaries....and as you know the treatment is pretty much the same even if they had found one.  The good part is every day brings him closer to starting treatment and getting this bad chapter in life finished.   Positive vibes always easy to send...and tucking into the proverbial "p pocket" also easy to do.

p

fishmanpa's picture
fishmanpa
Posts: 1120
Joined: Jan 2013

Hi Sunshine,

Unknown primary here. Just finished treatment (treatment followed biopsies, tonsillectomies and selective neck dissection.)

The biggest difference is the range of the radiation field. They will hit a broader area and much more will be subject to the rads. 

"T"

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Prepare for the worse in treatment side effects, hope for the best... He'll be somewhere in between....

Best,

John

HobbsDoggy
Posts: 165
Joined: Feb 2013

Also had an unknown primary.  I got a little more generalized radation than if the found the primary.  From what I understand an unknown primary has a somewhat better outcome in getting rid of the cancer, but the treatment is a little rougher.  Not playing doctor here, so just saying what I was told and how my treatment went.  Got though it.  It was rough for sure but slowly and somewhat surely coming around.  Four and a half months out.  Hang in there.

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Don't worry, his field can't be bigger than mine was.  My lymph nodes on both sides of my neck were infected so I got the "Jumbo" version; a full 20 minutes on the table.  My point being it was not fun at all but it got done.  I'm 3 months out of treatment and I ate Pepperoni Pizza tonight.  Not much, but some.  Tell your hubby that the end of the tunnel isn't that far away and make sure you let us know what he's dealing with so the wealth of knowledge that lives on this board can help.

Best,

Joe

fishmanpa's picture
fishmanpa
Posts: 1120
Joined: Jan 2013

J,

Dang! 20 minutes? IMRT rads? My actual rads took only about 2 minutes. I counted 26 counter-clockwise rotations of the "rad gun" before the machine spit me out. I was on the table no more than 15 minutes with the scan, prep and treatment. They hit pretty much everywhere South of my ears in various degrees. 

Pepzidroni Pizza 3 months out of treatment? ;)  Now that's something to look forward to! I find this whole not eating thing to be a real drag. 

"T"

MarineE5
Posts: 758
Joined: Dec 2005

"T"

Like many here, I watched all kinds of cooking shows while going thru treatments, thinking about what I was going to eat when I was done. I can tell you that in the first year after treatments I had 4 choking episodes, luckily, 3 times my son was visiting and did the Hiemlich manoeuvre on me. The 4th time I was in a resturant that had recently opened and I choked on some corn of all things. A customer helped me and I finished dinner before the rescue squad arrived.....

Anyway, pizza is a chore with the cheese...it becomes a large piece of gum and hard to swallow. Just be careful...

My Best to You and Everyone Here

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

My total time on the table, from the time I was masked till the time I came off the table, was 20 minutes.  I have no idea what the actual IMRT time was but it made a complete 360 degree circle stopping and shooting along the way.  If I remember right it stopped and shot 14 times.

J.

donfoo's picture
donfoo
Posts: 1279
Joined: Dec 2012

Interesting as today was the first time my curiosity got the better of me so I timed my turn on the ray gun. It was 10 minutes from initial laydown to hopping off the slab. The actual buzz job goes twice, each rotation about 60 seconds and no discernable clicks, just a constant humm/ buzz.

A couple days ago I noticed as the main ray shooting arm passes by, I can actually see a series of gates or fingers moving as it passes by. It  makes a pattern that makes me think it is some form of mask that defines the specific radiation pattern as it is arching around my neck.

fishmanpa's picture
fishmanpa
Posts: 1120
Joined: Jan 2013

The machine I was on was named "Tomo" for Tomotherapy. It's an IMRT therapy in which the radiation is delivered in "slices". Once I was snapped in, the machine would do a scan to make sure everything was aligned. It would then spit me out and I'd see the tech for just a moment before treatment would start. There was a "clicking" noise I heard as it did counter clockwise rotations around my head. The clicking noise I was hearing were the aperatures opening and closing as the radiation was delivered. I looked at some notes I had and the actual rad delivery took 101 seconds. The scan about 5 minutes. 

"T"

Roar's picture
Roar
Posts: 247
Joined: Mar 2013

Keep us posted- how many treatments to go? Stay positive - keep up the fluids and calorie intake- sending positive thoughts

CivilMatt's picture
CivilMatt
Posts: 3020
Joined: May 2012

SS60,

“Unknown primary”, no problem, your plan will take care of it.

Time to start preparing for the ride; check the Superthread for check-list.

Good luck on an uneventful treatment

Matt

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

I am just a few weeks ahead of you in my treatment so I don't have much experience to offer, but if you have questions I can answer I will be happy to chime in.  Good luck!

boardwalkgirl
Posts: 263
Joined: Jun 2012

I am an unknown primary. Had surgery for removal of what they thought was a branchial cleft cyst and a week later they told me it was actually a lymph node that had gone cystic and was malignant. Had an MRI and Pet scan which were clear. Had 35 radiation treatments, both sides of the neck, they scanned everything. 3 rounds of chemo. I was HPV + and they tell me that lots of times the people they never find the primary on do better than the ones that they know. I am 9 months out now and gradually getting better. It is tough but you will get thru it. Listen to what they tell you and follow their instructions. When you have questions or just need to vent, come here. You will find amazing support and information here, I can't imagine how hard it would have been with out the support of the wonderful people here. Sending prayers and positive thoughts your way.

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