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Advice for a newbee caregiver......

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

I have appreciated reading all of your posts since Oct. I've started a new thread because I've asked some of you questions before and then I can go back and find the original post (I'll get the hang of this). I have a question that hopefully someone can answer. My husband had a branchial cleft cyst removed in neck that was sent to three pathologists, all said metastatic squamous cell carcinoma. Ears nose throat Doctor said we needed to do a radical neck dissection. We refused. Did a PET scan nothing showed (I mentioned this earlier in a post). Had all but 7 teeth pulled to get ready for radiation. Had a second ENT Doctor opinion who last week put my husband under and did a search with several biopsies done. He can find no cancer. Next week we have a 3rd appt. with Oncologist to discuss radiation (he insisted on second ENT doc). He is from India and difficult to understand. We live in a small town, not many options. He is an hour and a half away. Have any of you heard of, "since we don't know where it is, we'll have to radiate all of the neck and not just one spot." They made it sound like it'd be better to have found a spot on the base of the tongue, that way they would radiate that one spot. So do we insist on radiation pinpointed on just the spot where his cyst was? The ENT Doc said it was possible that that was where the cancer originated from. We've had tests and PET and CT's since Oct not to mention the surgery and we want to do something already! Like my husband said, if I had three weeks to live I'd be dead already! I tell him about all of you and he really appreciates it (he's leery of the computer). We've learned so much from all of you, Pegs and fluoride trays, 4 songs during radiation, things we've never heard of before. Thanks for any experience on our situation.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Hello Liz. I had found a swollen lymph node in Oct 'o8 and by Dec it was the size of a large lemon. Biopsy showed SCC. They did a couple of CT Scans, a PET Scan and knocked me out and did exploratories. They could not find my primary. So my diagnosis was Metastatic Squamous Cell Cancef with unknown primary. I had a modified radical neck dissection the next day after the exploratories. They removed my tumor, 23 lymph nodes 3 were cancer and took my left salivary gland as well. The tumor also had attached itself to my jawbone a bit. After my surgery I went for two other opinions as to whether to do radiation or not. I am also a Fanconi Anemia patient and I refused chemo outright because it is known to be deadly to we FA patients. It was a difficult decision to make with rads. I decided to go forward with it and had 7 teeth pulled and a peg placed and then had 30 rads from 4/6/09 to 5/15/09. I has been a rough journey, but I am still here and settling into my new normal. Since my primary was unknown, they do indeed cover a wider area for radiation. With my lymph node involvement they did bilateral rads. The RO make up a plan with the areas he feels should get radiated. A best guess since the primary is unknown. May I ask why you guys decided to refuse the neck dissection? Did they recommend chemo as well for him? As far as only radiating the one spot I don't think that would be my decision. Because of the neck dissection and what they found there and with the lymph nodes they were better able to reccomend which areas to be radiated and why it needed to be radiated. Was your husband staged? Given that TNMO thing? Sorry I can't think of the name my brain is fried right now.

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

Thanks for your information. We didn't do a neck dissection because they couldn't find any cancer anywhere but inside that nod inside the cyst. Plus they scared us to death about the loss of the use of an arm etc.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

I don't have much in common other than having had cancer (tonsils) and both Chemo (nine weeks), then seven weeks of concurrent Chemo with daily radiation....

I would consider the surgery and rads, and even the possibility of chemo...

It definitely puts you in a rough location considering the best alternatives for treatment. I can only really offer to try and find someone that makes the most sense to you, and that you trust.

If you go in having issues or doubts with the treatment or your doctors, it's hard to stay positive and confident.

Both are huge in treatment and recovery.

Thoughts and Prayers,
John

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

Thank you John.

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

I was diagnosed with SCC Unknown Primary in April '10. I did the radical left neck dissection. It wasn't that bad for me. I now have 100% use of my arm.
The plan was radiation following surgery but news after surgery was so good that radiation was not done.
My doc wanted to avoid radiating the whole neck so he's watching me like a hawk and if a primary location does show up ( we're hopeful that it is gone ) we will do radiation where needed only.
These are all tough choices. The key is to find a team that you trust, follow their advice, and fight your tail off. I'm a big believer in prayer too.

Wishing you the best,

Joel

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

So Joel, they did no radiation because they couldn't find any cancer? What was the good news after your radical neck dissection? So I am wondering if we should not do the radiation? It's too bad that they pulled my husbands teeth, but then again...it'd sure be great to not do the radiation. There are so many doors to choose! Which is the right one?

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi Liz,

I think if it was me I would get a second and a third opinion from different oncologists at a major cancer treatment center. I don't really like working with customer service reps over the phone that I can't understand. An oncologist that I couldn't understand would not have been acceptable to me for cancer treatment. The American Cancer Society offers help with travel and lodging for those that need it with some notice. Peace, strength and comfort to you and your family,

Bob

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