Adenoid cystic carcinoma ACC

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Adenoid cystic carcinoma ACC

OMG I dont know where to turn I've tried staying positive as the ENT said it was small and we got it early. I have just seen my hystology report its pT3 N0 but evidence of perineural invasion and in the margins. I was confident it would be better than this, still awaiting MRI is there anyone out there with similar histology I know this is a slow growing cancer but if its already gone elsewhere .......  is there anyone with similar experience I would love to hear from you.

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Re: Adenoid cystic carcinoma ACC

Sorry to hear about your cancer. I have exactly the same cancer Adenoid Cystic Carcinoma in my Frontal and Ethmoid sinus. I have had nothing but trouble with my cancer as it has put me through so much agony pain and Phsycologically it has drained me to the hilt. I was diagnosed in June 2017 and only given 6 months to live. Now we are into 2020 and i am still alive after 3 surgeries 11 months of chemotherapy 8 months of Immunotherapy and 2 4 week rounds of Radiation. My cancer even still after all these treatments i am still stage 4 with metastis to my lungs. Since my last radiation 3 months ago it has knocked the hell out of me causing me to have serious fatigue and anxiety that has affected my marriage and everything. I can really feel for you with type of cancer and i hope you can knock it on its head. Its a annoying cancer as afterall i was given 6 months to live but i am still here after 3 years. Good luck with it all and stay positive even as when its knocking you around.

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Re: Adenoid cystic carcinoma ACC

Thank you so much for taking the time to reply to me. Sorry you have had such a rough time, to date I have had no issue just a lump causing me psychological grief. I think that is half the reason it took so long to get diagnosis, no pain no symptoms and my GP just dismissed it as nothing to worry about. If there is one thing i have learnt from all of this it is trust your instinct. I hope things improve for you and you can get some relief some from both the physical and mental pain. I have read extensively in the week since I was diagnosed and it seems some ppl do live for a long time with this, I am in my 40s with a young family so I hope that is the case, it have to believe it is so.

 

Again  thanks for reaching out and take care.

 

Caro

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Re: Adenoid cystic carcinoma ACC

Hi Caro

 

No problem at all. Sometimes it helps to talk with others who have cancer as it helps to vent out the frustration of having cancer. Mental and phsycological torture i would call it as it never lets up. Ascsoon as something good is happening then bang another problem created. My cancer did spread to my lungs and when that happened my ENT doctor said to me no point in having another surgery to sinus because your going to die anyway. This is the words he said. Now my lungs are good with no cancer on them he still refuses to remove the whole tumour and only takes out enough to help with my breathing from sinus. So now i have taken it all in my own hands and living a healthy lifestyle so tumour cant grow and to keep it at bay. I did have radiation a few months ago but it really knocked me around causing Anxiety with severe panic attacks. I have come to the realisation that you can live with cancer as long as you keep the glucose at bay ie no sugar with plenty of fruits and vegetables. Since i changed my diet i dont get any pain in my sinus but i still suffer bad anxiety. I hope you get on top of your cancer and if anytime you need to chat please do so as it helps to get the frustration and fear out.

 

God Bless

Trevor

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Re: Adenoid cystic carcinoma ACC

Hi Carol, sorry to hear you ve been diagnosed with this cancer, but take heart  with me telling you about my story. In 1999 I was diagnosed with ACC of the parotid gland, had the tumor removed and had 2 months of radiation. Everyone has told me that chemo doesn't t do anything for ACC. They thought I d do ok, but 4 years later on a routine chest X-ray I had numerous nodules, so I had a cat scan of the lungs and it looked liked Xmas lights. Had an open lung biopsy done which tested ACC, and also showed numerous little tumors around the peripheral surface of the lungs which is good as there was no airway obstruction. So ct scans every year which showed tiny growths. Take 3000 mg/ day of vit C and also Tumeric 250-500 mg a day. This I m doing on my own, no one told me to do this. As a RN I m constantly researching plus being retired have a lot of time on my hands. Well in 2015, (15 yr post diagnosis), some small nodules in my skull base, one extending into temporal lobe of brain. Went to large hospital in a Boston, was told can t operate, too dangerous. Went to another, told the same thing but was given an option. A doctor at Brigham & Woman in Boston is doing cryoblation into tumors in the head that are too complicated for surgery. It involves no incision, you re under anesthesia, he goes in under an MRI in the Amigo operating room suites and freezes the tumor, thereby shrinking it/ killing it.  The brain is the last place ACC goes and-is almost always fatal, however, here I am 5 years later, I ve had cryo 9 times, 3 of the tumors have shrunk or gone. This doc is a godsend. I always go home the day of surgery and I m fine. So I ve had this cancer for 21 years and I will outlive because I-will continue to fight it. Truthfully, I ve had more problems with the initial 2 months of radiation as it destroyed my right ear and did a tune on my cervical vertebrae but that s me, radiation doesn't t affect everyone that way. This doc in Boston can keep head cancer patients alive but not enough people know about him----Dr. Thomas Lee, neuroradiologist, Brigham and woman s hospital, Boston. I was told at Dana Farber that he s the only one I the country that they know of who will do this. Take heart Carol and fight.  21 years!! 

 

 

 

 

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Re: Adenoid cystic carcinoma ACC

Thank you so much for sharing this. It does alot to lift my spirits and have hope for the future. Its also good to know what other people are trying, I am on Vit C not high enough mg though, taking tumeric in a lemon, ginger drink little things like that as this is all very new to me. Its good to hear what options are out there also for if / when the time arises. Thank you!  I too intended to still be fighting in 21 years.

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