Hi,

My name is Christy, and I am new to this forum. My grandma was just diagnosed with oral cancer. She is suppose to be having another biopsy on September 1. My question is....why are they not cutting out all the cancer in her mouth on September 1. She was checked on Tuesday and the cancer was not in her nose area yet. I don't think it is in the neck yet either. From the research I have done I think she may be at stage 2. We are still waiting for the CT scan also. It takes so long for all these tests to come back.....meanwhile, her cancer is growing so fast. She first noticed the little sore on the weekend before August 2 (day she had it looked at). The doctor put her on an antibiotic. The sore got bigger. She was on holidays and saw a doctor two more times. They didn't do anything either. When she got back from holidays she went to the hospital and they did a biopsy there (August 17). Her face is swollen.....now right up under her eye. She is 74 and her health is not so good. If they are not taking all the cancer on September 1 does that mean her cancer is other places too? She had breat cancer over 10 years ago.....no reaccurance. What should I expect? I don't understand why they don't proceed faster.....the time she gets surgery her stage 2 cancer will be stage 3 or 4.

Hi Christy,
It typically can take a month or more for all of the diagnostic testing to be done for a complete workup. The treatment is pretty severe so they have to be sure that the kidney's and liver and healthy before they start also. In the beginning the doctors were using the process of elimination so they gave her a course of antibiotics to see if it would respond. It obviously didn't so now she is seeing a specialist. Many of us, including myself, went through a couple of courses of antibiotics first. They don't always operate on head & neck cancers, sometimes they use radiation and chemo only. In any case they would have to determine the staging before they will define a treatment plan.

I read somewhere, just the other day, that cancer does not grow any faster than any other cells in the body - that it devides and multiplies like any other cells. Whereas as regular cells stay confined to whatever their specialty is, cancer cells can grow, uncontrolled into other areas. So it can spread from the tonsil(s) (for example) to the muscle tissues in the neck, etc.

From the date of my original Dx to the start of Tx was 2 months and that was after everything, tests, scans, biopsy, etc., was placed in high priority by my medical team. And that was after they KNEW it was cancer! I started going to doctors for the "anomoly" in my throat many months earlier. My head & neck surgeon told me that the cancer had probably been there for over 2 years before I noticed it.

The following is an extract from thi months "Placebo Gazette #16" about health care in Canada.

1. O

Hi Christy, I entirely understand how you feel when you think the doctor has held up everything, delaying diagnosis and treatment. I had the same feeling when I was diagnosed but not yet given the schedule for treatment.As Gary has mentioned, a lot of tests have to be done after the initial confirmation that it is cancer. I had MRI, ultrasound, CT scan, chest X-ray to determine the exact position, staging and size of tumors,etc. before the team of doctors could draw up a plan for treatment. I also had to go for dental check, mask making for RT, blood test, etc. before the actual treatment could start. I also yelled at my doctor thinking that things moved too slowly and my tumors were growing very fast. I pushed my oncologist a lot and 'threatened' that I would get help from another hospital if he didn't speed up.Yet my oncologist told me the cancer had probably grown in my body for a long time already and the waiting time of a few weeks would not change much.When I had a fixed timetable for my treatment, I felt so happy and relieved that I smiled the whole day.To look back,I don't understand why I reacted that way because the day of treatment was the beginning of my nightmare. My waiting time was a bit shorter than Gary's. When I was diagnosed, it was 27/9/01 and my first treatment fell on 1/11/01. Dates that I would never forget in my life. The waiting time is a torture but you can make use of this time to let your grandma eat as much nutritious food as possible, cheer her up so that she is strong enough physically and mentally to fight the battle.Trust the team of doctors taking care of her and be patient. They should know what is the best for their patients.

Karen

Thank you Karen and Gary. It is so hard to wait....I have been sick with the flu so I can't even go see her. She goes in for the partial biopsy on September 1. If she is staying in the hospital for 2 days, does that mean they might take the entire tumor? Why would they only take a piece? This would be her second biopsy already.....is that normal? It has to be 2" x 2" by now....it smells so bad and she is in so much pain. She still hasn't even got a CT scheduled yet. Yes, that is Canada for ya. My aunt is trying to schedule a private CT scan if possible. We will find out more today. My fear is that the tumor was just on her gum, but now has spread because of the wait.....or does it mean there is more cancer that we don't even know about? I feel so terrible and helpless. Christy

Hi Christy,
The odor thing is symptomatic of something going on that's for sure. My tumor didn't have any odor issues - it was just a big tan rubbery blob. It also didn't cause any pain. Oral cancer and most cancers in general are typically painless unless they get large enough to press against another organ. It sounds like they might do a resection if she's going to be there for a couple of days. But then again it is fairly common to keep people in the hospital for a few days as a result of being under general anesthesia or the possibility of bleeding, hematomas or infection- especially at her age and health condition.

I am confused about the need for a second biopsy - you said earlier that she was already Dx'd with oral cancer - I take that to mean that the biospy was positive - and if so, what type of oral cancer, SCC, adenocarcinoma, melanoma, etc.? You are also speculating on the staging. They really need all of the Dx information first. If the tumor is indeed 2" (or larger than 4cm) than it is either a stage III or IV, depending on whether there is regional metastesis. Are they SURE it is, in fact, a tumor? Have you spoken directly with the doctors? Odors are usually always signs of infection or tissue necrosis.

And what other health issues? - if she is diabetic, for instance, she may have wounds that are very slow to heal and not as responsive to antibiotic therapy.

I asked my H&N surgeon one time why a 6 or 8 week exam cycle and he told me that it would allow enough time to respond to a recurrence or other issue without things getting out of control.

I need to add also that I am not a doctor, these are just my personal opinions and not to be construed as any form of medical advice.

In my experience, odor = infection. I covered up the odor, not wanting to offend anyone, and subsequently was very ill for having done so. Your grandmother could easily have an infection unrelated to the tumor. For instance, she may not be able to practice top notch dental hygiene because of the tumor. In any event, make sure her doctor knows about this.

Christy and Grandma, Welcome to the site. Sorry you have to be here, but hopefully we can help you with this nasty disease. Just to reinforce the information you already have, I first noticed a lump in my neck in late July, 2003. Various tests later and I was finally diagnosed mid-October, 2003. Treatments started January, 2004, as I had to have two teeth removed and healing accomplished before treatments started. So, about 6 months from when I first noticed the tumor and 2.5 months from diagnosis. Interestingly, my rad doctor guessed I had the disease for 18 to 24 months prior to treatment starting. My surgeon said 6 - 9 months to live if I didn't treat it. So I treated it and here I am.

I sure hope your grandma gets all the treatments she needs, but don't be too concerned if it takes a little time as the cancer treatments can't start until the doctors know what the situation is and develop an individual plan to treat it. With your grandma's age, they sure don't want to do anything they don't have to do. Will pray for you both to come through with flying colors.

Hello everyone.....:-)) On the 17th the hospital took some of the tissue out of her mouth and sent it away for a biopsy. This is what is says.....

GROSS DESCRIPTION: Mouth Lesion. Submitted are four fragments of off-white tissue appearing ulcerated. The largest fragment is 0.2 cm in greatest dimension and in aggregate, the lesions are 2.5 x 2.5 x 1.0. The specimen is serially sectioned and totally embedded in three blocks.

MICROSCOPIC DESCRIPTION: All of the material consists of an ulcerated and partially necrotic poorly differentiated tumor. In the better preserved areas the tumor cells are epithelioid in appearance with prominent nucleolus in many of the cells, increased mitotic activity and moderate amounts of eosinophilic cytoplasm. Interventing stroma has an osteoid-like appearance but no bone fomation is identified. A poorly differentiated squamous cell carcinoma is favored over sarcoma. Special stains will be performed, internal consultation obtained and a further report will follow.

I found out today that the CT scan will be on Monday. On Wednesday she is going for the second biopsy. From what my dentist said the report didn't say she had cancer for sure.....is that why they are doing another biopsy? Is there still hope that is might not be cancer? Also, my grandma does not have teeth..:-))

The tumor is on her upper gum. It started with the white in her mouth too. I think the smell is rotting tissue.....this thing has popped twice, once by the hospital and once on its own. The first time there wasn't that much blood. The second time it popped it was filled with blood. I think the hardest part is the waiting and not knowing what is going on.

She has an enlarged heart, arthritis, gout, her breathing doesn't sound so hot either. I think that is from the smoking.

Any information would be helpful. I have been on this site pretty much day and night for the past week. Thank you. Christy

Hi again everyone....:-)) I just talked to mom.....she said the doctors confirmed she does have cancer......:-((

Christy

Hi all,

I must be one of the lucky ones - I first worried about the swollen gland in Sept 2003, told my doctor late Oct 2003; had an ultrasound booked virtually straight away; then an ultrasound guided biopsy within a week; chest X-ray next day; November 5 2003, informed I have cancer; referred to an ENT/Onc Surgeon ASAP; CT scan ASAP; then a surgical biopsy. Then the radical neck dissection in mid december 2003. All results were in the same day, or a day or two later (I usually collected my results and read them before going to the GP or Onc.)

Reading all of these posts, I think I have been lucky with my team of professionals - there was hardly any waiting times for test results, usually the same day. It all was a blur: from my first worries about my "lovely" neck lymph node lump (2 x 3.5cm, met to neck, primary on soft palate near the tonsil), three months later I began radiotherapy. And it was nice to be able to read my reports straight away (except for the ENT/Onc surgeon). Maybe Australa is not too bad, even though we have problems with our medical system, like everywhere else.

Now, I count mself lucky - saw the Head & Neck Clinic the other day, and I don't have to see them until 3 months time now! I am now 5 months post radio.


For Brian - I mentioned OCF to my ENT/Onc and he sounded very interested, as they want to set up a site here and perhaps have a link to OCF! Will let you know further as things progress.

Cheers!

Tizz