Got my PET scan results back today. The cancer is back only 5 months after my surgery. I am at my lowest tonight, and feel so defeated.
Camille

Im so very sorry!!!! Ive been there and know how horrible you must feel. Please do your best to think positively. Remember... The cancer has been found very early, you have your medical team, and now you have us here to lean on. You can do this!!!

So far you have only been treated with surgery,. That means you have all treatment options available to get every single cell this time around.

I know this must be devastating news , its ok to lean on us. We'll get you thru this you as much as possible to get thru this.

((((HUGS))))

Camille, I'm sorry to read that the news was not better and that you had to post this...

I hope that we can help you here on this forum. There really is much hope as you have not already had radiation, but it's difficult to hear when you've been told that further treatment was unnecessary. Perhaps allowing yourself a few days of sorrow before getting back into a fighting frame of mind might be one approach to regain some control.

Lottie

Camille,

I'm sorry for any concerns with the PET scan. Have they done a biopsy? As you know, or don't, no scan can prove cancer 100%, only a biopsy can. I've been in your shoes dozens of times, and scans light up (SUV) like a Christmas tree, and are highly sensitive, for the good and bad, especially post treatment, in your case surgery when there can be false positives. Even still, it's not uncommon for patients to be treated further, and many here were, including myself.

Curious as to the area of concern on the PET scan, and the doctors thoughts, and plan moving forward?

Hi Lottie,
Thank you for taking the time to respond to my post and your very kind words. I have definitely met and had some very kind and comforting words from others such as yourself on here. I am trying to stay positive, and I think I have exhausted all my tears for the time being. Will definitely keep you also in my thoughts and prayers.
Camille

Update on my situation
Well yesterday I saw my surgeon who went over the results of my PET scan with my husband and I. He also put the scope in my nose and down my throat. It appears I have a new tumor at the back of my tongue. My surgeon is so bewildered by this as once again he stated he had such good clear very large margins and the pathology report after my surgery also confirmed this. At my PET scan prior to my surgery absolutely nothing showed up at all in that area of my tongue. So now I am scheduled for a biopsy on October 21 to see if this tumor is from some microscopic cells that may have broken away from the original tumor at the front of my tongue, or if I am just unlucky enough to get a 2nd different tumor only 5 months after my surgery. He said he doesn't want to do surgery on this tumor due to the location and the fact I would lose most of my tongue, have swallowing and eating issues, plus talking issues. He said this kind responds well to radiation and chemo so that is the plan. I will also have a port for my chemo and a feeding tube put in while I am out from the biopsy,
I left there and went to meet with the radiation oncologist where they fitted me for a mask. It wasn't pleasant but not as bad as I had imagined. The worse part for me was having to bite down on that wax thing in my mouth for so long as my tongue is so sore. The radiation doctor went over everything but I was so overwhelmed not sure I even heard it all. Thank goodness my husband was there to hear it. I then left there and they had squeezed me in at my primary doctor because I had to go there for bloodwork, and a EKG to be medically cleared for the biopsy. Then it was next to the radiology place to have a chest x-ray for the clearance.It was such a exhausting day and by the time we got home last night I was mentally and physically exhausted. We have to go to Las Vegas for our doctors as there are none where we live, and that is a 207 mile trip each way which makes for a very long day. On the ride home last night i kept feeling like I am in a nightmare I can't wake up from. Right now i am just feeling so down and overwhelmed. Can anyone here be kind enough to tell me what I can expect with this chemo and radiation? I just have so many questions that I have no clue about, and was not thinking straight enough yesterday to ask them. On a positive note my surgeon did give me some pain pills for this excruiating pain I have been having. he said the tumor is pressing on nerves and that's why the ear, jaw, head and throat pain. If anyone here could tell me what to expect, it will be so appreciated. My daughter wants to know if i will lose my hair, and i just want to know everything.
Camille

Hi Paul,
I appreciate you taking the time to respond to me. The area of concern on my PET scan says as follows: There is a interval increase in hypermetabolic activity involving the right posterior molar trigone region extending into the adjacent floor of the mouth and right base of tongue. Then it compares the size of a right level 2 neck node from my previous scan in April . Under impression it says there is interval worsening of active malignancy in the right neck as described as well as bilateral neck nodes. I am just having a hard time wrapping my head around how it is back only 5 months after my surgery and neck dissection. I have never smoked a day in my life, nor used tobacco products, don't drink, and was negative for HPV. Anyway, thank you so much for your kind thoughts and words.
Camille

Camille,

I’m so sorry about the bad news. You did not say what kind of chemo you’ll be getting, but if it’s Cisplatin, you may have slightly thinner hair, but you won’t have any dramatic loss of hair. As for radiation, you may find that the hair and the back of the neck, where the radiation enters the head, you will lose some hair or some thinning. It will slowly grow back but it is hardly noticeable. Do you know if it is cancer at the back of your oral tongue or is it at the base of the tongue? My husband had the second type and he did not have surgery. It’s just too difficult to get to the cancer.

ChristineB mentioned before that there are Hope Lodges for cancer patients near certain major CCC’s. If there’s one at your hospital, you can consider staying there and it will save you the two hundred mile ride for treatment. If there isn’t a Hope Lodge, then find out if there are medical rates at the hotels near to the hospital. They usually offer a substantial discount.

I can fully understand how you’re feeling. My husband finished radiation in January and in August he was told the cancer had metastasized. We were in shock. My husband simply would not believe it. He was offered a clinical trial and from that point on, it was taking it a day at a time for him and me. That I have found was a helpful state of mind to be in.

Camille, thank you for getting back. Not going across the grain, but I'm still holdinh onto some hope that it's treatment inflammatory response or at least not as severe as it appears on scan, A recurrence, or thought of a recurrence, is worst than the initial cancer, in my opinion, because of lesser treatment possibles we've been told or read, but that's not always true as others, invkifong myself, have had multiple recurrences and can prove that it's possible in select patients.

You'll get all the help you may need right here, minus your healthcare and caretakers, so you won't feel alone going through this. Whatever question you have, just ask and we'll try to answer as to what our experience ease or at least point you in the right direction for help.

Take care,
Psul


,

Camille, thanks for elaborating on your info! An estimated 5-10% of all OC patients are those with no known risk factors (not HPV and/or no tobacco usage). Im sure that must be very troubling not knowing what caused your illness. Theres a million and one things that could be behind why one person gets this horrible disease while someone very similar does not. Treatment is mostly the same regardless of the cause. Most important right now is getting rid of the cancer. You do have many options available with surgery and/or rads with or without chemo. Best thing you can do is push to get appointments in the very best medical facilities you can get to, get your treatment plan and get started on becoming cancer free ASAP.

We're here for you to lean on. Wishing you all the best!!!