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Hello and thank you for being here! #200369
08-23-2020 11:53 AM
08-23-2020 11:53 AM
Joined: Aug 2020
Posts: 2
M
Marjatta Offline OP
Member
Marjatta  Offline OP
Member
M

Joined: Aug 2020
Posts: 2
Hello everyone,

First, I must say that this is one of the best online forums I've encountered in my search for answers and support for oral cancer! I am SO glad I found you! smile

I was diagnosed with floor-of-mouth cancer in March 2020.

The primary tumor was surgically removed in April 2020, but I started to have swelling in one of my lymph nodes during the recovery period. The doctor did a biopsy of the L1 lymph node, and it was determined that the gland was cancerous.

In August 2020 a neck dissection was performed.They removed 33 lymph nodes; 3 were cancerous. More disturbing, the first lymph node had an extrusion. I think they called it "extra-capsular spread," meaning that the cancer was trying to spread beyond the lymph node, and a bit of it was clearly visible to the surgeon during the extraction.

Because they found this, the post-surgical plan changed from 6 weeks of radiation only, to 6 weeks of daily radiation and a weekly chemotherapy session as well.

Once I kind of absorbed the shock of that, I was also advised that I would need to see a speech therapist AND probably wouldn't be able to swallow, so a gastric feeding tube might be required.

Suddenly, the oral cancer that I thought had just shown up out of the blue, had in fact been there for quite a long time. This should really not have been a surprise to me, since I have smoked from the age of 12, only quitting during my pregnancies. At the age of 63, my past has finally caught up with me, and I am now paying the price. While I have finally quit cigarettes for good, I wish I would have had more respect for my body a lot sooner.

Anyhow, not being able to turn back time, I will do my best to live healthier going forward. Because I've had two back surgeries resulting in nerve damage, I have pretty much lain around eating, drinking, and smoking for the past 20 years - anything to reduce or distract myself from the neuropathic pain of my back injury. Unfortunately, despite numerous drugs, my chronic pain is barely tolerable, so having cancer on top of that kind of put me into a tailspin for a while.

But "Where there is life, there is hope," my mother used to always say. So I am hanging onto every word of wisdom she ever gave me, God bless her soul. Another phrase that gives me strength is "Don't give up 5 minutes before the miracle." In other words, get my act together and fight this for the sake of the wonderful future my husband and I envision. Both retired, we're looking at moving away from the big city to a house on a lake in a rural area. Of course, since we've both had oral cancer (yes, he's an ex-smoker too), we need to be close enough to major centres in order to have sufficient checkups, but neither of us wants our cancer diagnosis to follow us around like a sad puppy.

Again, thank you all for being here, providing your support and sharing your own experiences. Every little bit I read from you, the better I feel!

Blessings,

M


- 63 yr old female, ex-smoker
- Diagnosed with floor-of-mouth squamous cell carcinoma
- Had surgery to remove tumour April 2020
-Neck dissection surgery to remove surrounding lymph nodes July 2020
- Just embarking on radiation-chemo journey Aug 2020
- Chronic pain sufferer for 20 yrs due to Failed Back Surgery Syndrome; unable to exercise or walk for long periods
Re: Hello and thank you for being here! [Re: Marjatta] #200370
08-24-2020 05:55 PM
08-24-2020 05:55 PM
Joined: Jun 2007
Posts: 10,500
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,500
PA
Welcome to OCF, Marjatta! Im very sorry you are going thru so much with your recent oral cancer (OC) diagnosis! Its definitely NOT an easy road!!! You are in the best place to get info and support to help you get thru whatever your future holds.

I was surprised to read your husband also had OC! Its extremely unusual having a couple both develop OC. In my 13 years since being diagnosed with OC, I havent heard of a couple where they each had OC. In the US, theres only around 53,000 patients who are newly diagnosed with OC this year. Being both a caregiver and now the OC patient is something I cant even imagine. It must be very difficult for you both.

A feeding tube is something many patients try to avoid. I did too but way back then I was very lucky to have had the wisdom of OCF members help me to understand the feeding tube is just another tool to help get me thru some very difficult days/weeks ahead. In 2007 when I was asked if I wanted to have a feeding tube I was so surprised I was given a say in something, I said no just because I was finally given a choice instead of being told what would happen. None of us liked or wanted to have the tube but it really does make getting the necessary daily nutrition so much easier. Thats the key to this whole thing... your intake!!! The better you do with taking in enough calories and hydration the easier rads will be for you. At the very least you should take in 2500 calories and 48-64 oz of water... every single day from now right thru til you hit your first year post rads (at the very least, if you can keep it up til you are 2 years post rads thats even better). Thats the bare minimums every day, if you are losing weight then your minimums will need to be higher like 3000 or 3500 calories daily. Right now before treatments begin, try your best to eat all your favorite foods desserts too. You do not want to go into this having cravings when you arent able to eat them.

Since you have other medical issues your docs may have you see a pain management doc to help you better handle your current issues and any additional problems you have once your doing rads. I would suggest talking to your doc about all the specialists you need to get set up. If your treatment center is one of the comprehensive cancer centers (CCC's are the US's top cancer treatment facilities) they use a team based approach with all specialists meeting together (at the tumor board meeting) to discuss and map out plans for each patient. You as the patient and your caregiver are also allowed to attend the tumor board meetings too so you can ask questions and learn first hand what the plans for your "case" are.

Feel free to ask questions and we will try to help as much as possible. We've been thru it ourselves or as caregivers so hopefully we will be able to help guide you. Its not an easy journey but with our help we'll try to make it easier to get thru. Hang in there!!!


PS... Great job on your signature!!! Thank you!!!





Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Hello and thank you for being here! [Re: ChristineB] #200374
08-27-2020 03:25 AM
08-27-2020 03:25 AM
Joined: Aug 2020
Posts: 2
M
Marjatta Offline OP
Member
Marjatta  Offline OP
Member
M

Joined: Aug 2020
Posts: 2
Hi Christine,

Thank you for the warm welcome!

I also appreciate all the info on the gastric feeding tube. When I told my oncologist that I was 40 lb. overweight and was trying to lose it, he said, "No, no! You're going to lose 10% of your body weight without even trying, just because of the treatment."

I also agreed to participate in a swallowing study. Should I be accepted into the trial, I will either be placed in a "proactive" group or a "reactive" group. The hospital wants to determine whether speech/swallowing therapy is more effective if started before radiation (proactive) or after swallowing has already become difficult (reactive).

Marjatta
smile


- 63 yr old female, ex-smoker
- Diagnosed with floor-of-mouth squamous cell carcinoma
- Had surgery to remove tumour April 2020
-Neck dissection surgery to remove surrounding lymph nodes July 2020
- Just embarking on radiation-chemo journey Aug 2020
- Chronic pain sufferer for 20 yrs due to Failed Back Surgery Syndrome; unable to exercise or walk for long periods
Re: Hello and thank you for being here! [Re: Marjatta] #200375
08-27-2020 04:31 AM
08-27-2020 04:31 AM
Joined: Jun 2007
Posts: 10,500
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,500
PA
Weight loss is a HUGE no-no!!! Your doc is right!!! You like almost all OC patients will see weight dropping without even trying to lose it. Thats due to the body working OT to repair the damage the cancer is doing while trying to rid itself of the invader so its constantly working hard which burns ALOT of calories. Most who are just starting out are shocked when I tell them a bare minimum of 2500 calories every single day is needed. They're worried they'll gain weight which is next to impossible for anyone dealing with cancer. One big thing that helps most OC patients is to learn more about their illness. You may have learned about it from your husband going thru it but theres soooo much incorrect info out there and how quickly things change, it cant hurt to read thru the links to pick up pointers. Heres several articles (always from reputable sources providing only correct info) which go further into this and have info to help you get thru everything...


Livestrong - losing weight with chemo

Livestrong - Calorie Intake Importance

Diet and Nutrition during treatments

Cachexia ---- muscle - weight loss during rads

List of Easy to Eat Foods

Main OCF Site, Understanding


The last link is one of the best ones as it explains all kinds of things most patients should know before/during rads. With sooo many things being impacted and discussed at doctor appointments, its very easy to leave something out of office visits, forgetting about it until something pops up related to your concerns. Too much to read and learn can become overwhelming for some people. By educating yourself, you will be a better advocate for yourself later when you run into challenges.

Wishing you the very best with everything!!!

PS... Thank you for participating in the study!!! Its sooooo important!!! By helping researchers to better understand more about OC patients swallowing, it helps so many by adapting current treatment trends more towards what will work for most other future OC patients.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Hello and thank you for being here! [Re: Marjatta] #200378
08-27-2020 01:01 PM
08-27-2020 01:01 PM
Joined: Jun 2019
Posts: 219
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Gold Member (200+ posts)
D

Joined: Jun 2019
Posts: 219
OC is the most effective weightloss programme I've ever been on, but it's the worst treatment. I lost 40kg (although learning to eat during lock-down has caused me to put on 4kg :D) I ended up giving away pretty much my entire wardrobe to friends and charity, then I hunted on eBay for new ones.

Please, if you can, keep us posted about the trial! I am very interested as to see which part you become involved in and what the results are in the long term. I know what I think, but I'm not a medical professional smile


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile

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