Hello everyone,

I have just joined the forum and thought I would introduce myself.

As you can see my name is Sarah and I'm 20 years old. I am from Greater Manchester.

I underwent a superficial parotidectomy on 4/4/05 for what was thought to be a benign growth. However, the histology showed that it was actually Acinic Cell Carcinoma.

Luckily enough I don't need any further treatment at this point in time, and I just have to go for my regular follow ups.

I would appreciate any contact from people in a similar situation as myself since this cancer is so rare it is difficult to come across other people who have it/ have had it.

Kind regards

Sarah

Hello Sarah

It must be devastating to be told you had a cancer when only 20! Thankfully ACC has a good prognosis.

Acinic cell carcinoma (ACC) is a rare, slow-growing, low-grade salivary gland cancer. Most ACC occur in the parotid gland, representing between 2 and 3% of all epithelial parotid neoplasms. The reported 10-year survival rate is approximately 70%. However, ACC has a tendency to develop local recurrence in 40 to 50% of the patients, usually within 5years of surgery. Hence the follow-up required.

Hopefully you may come across someone here who has had ACC but the rareness makes it more less likely. You may find the following sites useful:

Acinic Cell Carcinoma - This site is dedicated to ACC. It is maintained by Ed Stroke, a 20 year ACC patient. Ed has spent a great deal of time doing research on the subject.

Acinic Cell Carcinoma Email Group - A second site by Ed Stroke

Best wishes
Vinod

Dr Joshi,

Thank you for the helpful information.

I was actually due to have my first follow up on 21/5 but it was brought forward to 14/5 due to my discovery of a lump in the right side of my neck.

I am currently waiting for a CT scan and I have an appointment to review the results on 3/8.

My consultant doesn't seem to think it's anything nasty so I'm going along with that for now!

Apparently it could be due to the fact that my lower right wisdom tooth is coming through so hopefully that is what it will be.

Kind regards

Sarah

As an add on to this message I have just found out that my scan is on Tuesday 21/6 and will infact be an MRI scan not a CT.

This message has been edited. Last edited by: Sarah250784,

hello sarah,
my name is cybil and i am 31. i also just went through a superficial parotidectomy on march 31st and on april 4, my doctor called and told me it is acinic cell carcinoma. so now i have to go back in next week for a second surgery to take the rest of the gland and anything else out they can. i hate that cause i am still hurting and swollen from the last surgery. why is it you dont have to do anything else?? they told me my tumor did not have closed edges , they were open so i think the cancer spilled into other places. he said i will need radiation and another surgery after this one to take out my tonsil which they think might be affected also. it is all very scarey cause i have 3 little girls who really need me. it was nice to find someone else who has been diagnosed with this.
cybil

Hello Sarah

I hope you are keeping well. Can you give us an update?

Best wishes
Vinod

Hi Sarah, Cybil and Vinod,

I have just found this site after searching the internet for info. I'm also relieved to have found others that have had similar experiences. I'm 31 and was diagnosed with an acinic cell tumour back in 1993 when I was 18. I had radiothery treatment for 6 weeks a couple of months after my parotidectomy. I then had 10 years of follow up appointments which were all clear and then last christmas realised I had either a swollen gland (the incorrect diagnosis from when I was 18) or that I might have another problem. When I think back I can't believe I was so stupid to ignore it. I suppose I didn't want to believe it. I'm married with two sons, aged two and four and I thought I was just very lucky to have had no more health problems. Anyway I had my first appointment with a Maxilofacial consultant on 9th August and was blown away to be told that I had another growth. I really didn't expect it - I had convinced myself it was nothing and hadn't even told my husband I was going to the appointment(hows that for ignoring the problem!).

I went for an MRI and chest Xray two weeks ago and go for the results this Wednesday 20/9. I suppose I'm hoping that the results will show nothing worse that I went through 13yrs ago - I think at least I can get through it like I did before and get on with enjoying life.

Would love to hear how you are both doing Cybil and Sarah. Hope you are both well

Dr Vinod - I guess you are the expert?? Is this your speciality?

Geraldine
xx

hello geraldine,
i am so sorry to hear that you might have another problem after all this time. its like a constant evil lurking in the shadows that could come out and bite you at anytime! ( thats the way i feel anyway) . I think about it everyday. I had my 2 surgerys in march and april. they decided against radiation for the time.( which i havent felt good about since). i wouldve felt better with the extra precaution i think. especially since the tumor had open margins and spread. ive been going every 3 months since. In the last 3 weeks i have actually noticed another little bump almost in the same place the last one was. its about the size of a pea. which is how the last one started. at first i thought it might have been a big zit or something but its been 3 weeks and hasnt gone away. I think i am kind of like you .... in denial, because i actually cancelled my appointment the other day and rescheduled , i think cause i am afraid of what i will hear.
i am also 31. i have 3 girls , ages 2,6, and 11.
I hope your results show that its nothing. my doctor told me at my last visit that i almost definantly will have to deal with this again. If they think that i dont know why they didnt send me for radiation. there was new radiation that i was very excited about ,called fast neutron radiation. they only have it in a few places in the united states . but it is supposed to be alot better , and rarely does the cancer come back after it. well let me know what your results are. Ill pray that its nothing. if you ever want to email me directly my email is zazoo74@juno.com
good luck!!
cybil

Hello Geraldine

I am not an expert on ACC but ACC is often slow-growing and low-grade, so let's hope for a good outcome. I do hope things will turn out well for you.

Best wishes
Vinod