Previous Thread
Next Thread
Print Thread
Joined: Jan 2017
Posts: 1
BETH47 Offline OP
Member
OP Offline
Member

Joined: Jan 2017
Posts: 1
Hello Everyone,
My name is Beth. I've been recently diagnosed with Adenoid Cystic Carcinoma. I was informed after 1st biopsy that it was cancer. Had a second biopsy done by the surgeon and it came back not cancer.
I had a superficial parotidectomy and 3 lymph nodes removed.
The pathology came back on that and it was Adenoid Cystic Carcinoma. The lymph nodes were fine but I'm told that there is only a 5-10% chance of it in the lymph nodes as this cancer travels the nerves.
I have to have 5-6 weeks of radiation starting in a couple weeks and am really nervous about it.
Both of my parents have cancer but both in different areas and not a head or neck cancer. So they are unable to tell me what it will be like other than to say they both agree they were very tired.
I have been reading online (I know, not always the best idea)that I could very well lose teeth, a great deal of weight by being unable to swallow due to throat/mouth pain and maybe my hair? Stiffening of the neck?
Is there anyone with ACC that I can talk to about this?
Any info or advice you could provide would be greatly appreciated. Thanks!
Happy & Healthy New Year To You All! grin

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF! Im very sorry you have a need for our group. We will help you with info and support to get you thru your treatments and past the recovery phase.

Most of our members had/have Squamous Cell Carcinoma (SCC). We do have several who were diagnosed and treated for ACC, but it is far less common. While ACC does differ from SCC, it sounds like you will still be going thru the same treatments. Ive included a link to our main OCF site that goes into much more detail about ACC. I hope you find this helpful.

As far as losing hair, that is not a big deal. I was worried about that too when I was first diagnosed. I quickly learned its better to lose some hair than not be around at all. Most patients end up with a small round spot on the back of their heads from rads. Mine was about the size of a penny and near the base of my head so it was not noticeable. Chemo is what causes the major hair loss. What I understand about ACC is at this time it is not responding to most chemo. Im betting you wont be getting chemo?

It sounds to me like you were given a laundry list of all that "may" go wrong. Not every patient experiences all of the side effects. Most patients feel they have no control over anything after getting a cancer diagnosis. During their appointment many find their ears stop working right after hearing that awful phrase "you have cancer". You have control over your intake which has a direct link to how difficult treatment will be. The better you do with meeting your daily minimum requirements, the easier getting thru this will be. Every single day from here thru at least the first year post rads you need to get at least 2500 calories and 48-64 oz of water. Even if your throat begins to get sore, keep drinking and eating. Get a prescription of Magic Mouthwash (MM) to numb your mouth long enough so you can eat. MM can have several variations. Mine was lidocaine, benedryl and malox. you swish it around your mouth for about 30 seconds and spit it out. I also suggest you start eating all your favorite foods now so you dont have cravings going into this.

Try your best to stay busy and away from Dr Google. You will notice you have a lot of hurry up and wait. If you can focus on what is within your control, you will become a stronger advocate for yourself. You may want to take someone with you to your doctor appointments so they can help take notes and listen for when you cant absorb the info. Also make a list of anyone who offers their assistance to you. Tell them when the time comes you will let them know how they can help. There are a million little things that others can do while you are being treated and recovering.

Best wishes with everything!


Main OCF Site -- ACC


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
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Hi Beth,

Welcome to the forum, although I am sorry that you need to join this circle of friends.

I am from Ontario, too. My husband was treated at Princess Margaret Hospital and I can confidently say that they are the best that you can find in the province.

Do you have any idea how much radiation you will be receiving? The side effects you will have depend very much on the amount of radiation you will receive. My husband had 70 grays which, on occasions, I was told, was the lifetime maximum to one area. Subsequently, he received 20 grays over five days in two other treatments. So he really had 110 grays in all. Ask your RO or your case manager nurse when you see them.

Have you had a dental exam at your hospital and got fluoride trays made? This should be done prior to radiation treatment and you should use the trays religiously all through and after the treatment. If you take good care of your teeth the chances of getting loose teeth will be minimized. It is true that you will get tired during your radiation treatment and on the weeks after, so plan to have someone take you to treatments and home. Take good care of the skin on the irradiated areas. At PMH we were advised to use unscented Lubriderm which you can get really cheaply at Costco. We have also found Glaxo Base (available from Shoppers) to be really helpful. But make sure you don't put cream before the treatment as it will cause the skin to burn (think frying eggs in butter). But bring the cream with you and put it on in the washroom/car when you comhe out of the treatment room.

As you have probably read, different people react to radiation in different ways. When John was at the hospital getting his chemo, he met another patient who was eating all through radiation treatment, including the Christmas turkey though he did complain that it tasted like straw. I have also met other patients who attended the post-treatment workshops at the hospital who were eating eight or nine weeks after treatment.

Whatever questions you have for your doctors, make a list of them for every time you see them, including the weekly update sessions so you don't forget to ask.

If you have other questions about radiation treatments, please feel free to come back and ask. There are some really knowledgeable members on the forum and they are very helpful.

Please keep us posted.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Welcome Beth!

Christine covered much of the information at this time. I don't think chemo is part of the treatment for ACC either, as surgery and radiation is, more specifically neutron radiation, which has positive benefit for ACC, but the locations that have them are more limited.

Not all chemo's do you lose hair, depends on type of chemo, but with radiation you usually do to the entrance and exit areas of radiation field, except with Proton Radiation, which has no exit wounds, but ACC had not been tested extensively with proton radiation.

They don't remove the teeth automatically anymore. You should see a dental oncologist for evaluation, have any teeth repaired that can be restored, if not, extracted with at least 3 weeks healing time is prefable. That may depend if they are in the radiation field too. Have fluoride trays made, given prescription fluoride, mouth guards for radiation if any metallic fillings, impeccable oral care, treat dry mouth, may help save your teeth from radiation side effects.

Mucocitus usually occurs with radiation or Chemoradiation in the head and neck. Again, impeccable oral care is important, especially after meals, rinsing with warm salt water and baking soda rinse, avoiding foods that are too hot, spicy, acidic or sharp textured to help prevent mouth sores, and infection.

Weight loss is expected, and may be kept to a minimum as mebtioned, Doctors start to get worried when you lose 5% of your body weight unintentionally in a 6 month period, so you will be monitored, and should be minimized.

You should also see a Speech and Language Therapist, SLP, for evaluation, and given exercises to do during and after treatment, which are lifelong. See a cancer dietician/nutritionist too, and have baseline testing of the thyroid as this can be effected by radiation, as well as hearing testing, if they are in the radiation field.

Light exercise, such as walking is good too for well being, and lymphatic flow, as well as light stretching as directed, and many eventually have some type physical therapy, Lymphatic Massage or Myofascial Release by trained licensed personnel to help prevent lymphdemia, fibrosis.

Here is a link to the Adenoid Cystic Carcinoma Research Foundation, which my also help with information.

https://www.accrf.org/treatment-options/overview/

Good luck!

Last edited by PaulB; 01-02-2017 12:46 PM. Reason: Link

10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs







Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5