Time from Diagnosis to Treatment

OKCnative
OKCnative Member Posts: 326 Member
in Head and Neck Cancer #1

Wondering what timeline most people experienced from the point they knew they had cancer until treatment started.

My ENT did a needle biopsy of my enlarged neck node on June 19, 2017. The biopsy came back postiive for SCC at the base of my tongue the next day. He referred me to the Stephenson Cancer Center the next morning and they called and scheduled me in for their first available appointment the next week.

I met with most of my team at the cancer center on June 26, 2017. That day they scoped me again and made a visual confirmation of the area they believed was the primary cancer.

So far I've done a hearing test and did my PET Scan yesterday (July 6, 2017).

I'm told today (July 7, 2017) that my case will go before their tumor board and that they will also get the results of my HPV test on my biopsy material today too.

I have an appointment date to meet with my dietician (7/11), meet my chemo doc (7/17) and a swallow test (7/20). But, so far, no date for my tongue biopsy or when treatment will begin.

I am wondering if this amount of time is normal when compared to others who have gone through this.

It looks like treatment will not begin until at least 30-40 days after first meeting with the cancer center. I guess I was hoping to begin within 10-15 days total and start on the road to recovery.

Comments

  • Engelsa
    Engelsa Member Posts: 50
    #2
    Similarities in time

    My husband had about the same wait for his treatment to begin. I found this holding pattern to be extremely challenging. I wanted treatment to begin as soon as possible. The cancer team have several items to address in order to provide the best care to the patient.

    I know this is easier said than done. Try to take a step back and gather your thoughts. Prepare for your journey; it will begin after a few more tests, appointments, etc.

    Sara

  • Andy13460
    Andy13460 Member Posts: 115
    #3
    Time

    It was 8 weeks and 3 days for me between confirming on MRI to first treatment, biopsy for the pathology was in the middle of that time.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    it all gets done

    OKC,

    11-11-11 felt lump on neck

    Few days later ENT examine & fine  needle biopsy

    1st of December, jugular vein dissection & tongue surgery

    December 23, 2011, confirm with biopsy SCC, BOT, HPV+

    January, February & March radiation & Erbitux

    March 23, 2012 finished treatment

    Matt

  • tbret
    tbret Member Posts: 76 Member
    edited July 2017 #5
    About a month

    It took about a month from, "You have throat cancer" until my first radiation treatment.

  • Chicklette
    Chicklette Member Posts: 225
    #6
    It took a while

    My husband first went to the doctor on January 15th for a painless lump on his neck.  He was sent for an ultrasound. That was suspicious so they sent him for a CAT scan.  Then he went to the ENT and did a needle biopsy.  (Up to this point, it was thought to be a branchial cleft cyst).  The needle biopsy was suspicious for SCC, but was inconclusive.  He went for a PET scan and the only thing that showed any uptake was the lump in his neck.  So, my husband was sent for a tonsilectomy and laryngoscopy.  This was the end of February.  Nothing was found.  So, at this point, he was referred to Massachusetts Eye and Ear for a second opinion.  The doctors looked at the scans, etc, and told him they thought it was probably SCC, but they would do another FNA to look.  This one was also "inconclusive" for SCC, however it was highly HPV+.  This made it diagnostically conclusive SCC HPV+ with unknown primary.   This was on March 20th.  He then had to have more scans and see more doctors.  His first actual radiation treatment was on May 8th.  He finished treatment on Jue 27th ... 36 rads and 7 chemos.  So ... Jaunary 15 - March 20th to be diagnosed.  March 20 - May 8th to start actual treatment.

  • soonermom
    soonermom Member Posts: 155
    edited July 2017 #7
    Timing

    Almost one month to the day before treatment began.  Now many things happened in between those two dates to prepare for treatment but it took that long before the first day of what for us was chemo and radiation.  

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    #8
    Tonsil cancer here.

    About a month for diagnosis and planning. Found the primary on a Friday and was in surgery on Tuesday. Couple weeks recovery time and 2 weeks of dental work then I started a 7 Chemo/35 Radiation regiment. Luckily SCC and HPV are slow growing. Your Drs. do this for a living. Relax.

  • Joel4
    Joel4 Member Posts: 263 Member
    #9
    The Wait

    Diagnosed on December 27th, treatment started on February 13th.

    Just had my three month post treatment scan and got an all clear.  The wait takes forever, but it takes time to cover all the bases and ensure that the best plan is in place.

  • SuzJ
    SuzJ Member Posts: 446 Member
    #10
    Believe it or not..

    Part of the wait, is them trying to give you time to adjust - thats what I was told, I replied, I dont need to adjust, I need it gone.

    Either you do it or I will... once treatment started it was... it was,... kinda "wham bam thank you ma'am" Once they start its all over, take this time to EAT, do the stuff you love doing.

  • MissBlueEyes4Life
    MissBlueEyes4Life Member Posts: 35
    edited July 2017 #11
    Not entirely accurate as my

    Not entirely accurate as my memory is jumbled.

    Symptoms started in beginning of January '17. Didn't get a scan done till mid-late february. Biopsy soon after. Official cancer diagnosis was probably beginning of March. Didn't have surgery till the 31st of March and 15th of April (they got pushed back a few weeks because i got strep). Because of surgery issues after second surgery it wasn't until  end of May/ beginning of June that i actually started chemo/radiation.

    I'd count surgery as starting treatment as they removed most of the tumor that way so that was about 4 months between?  ..Wow that seems like a long time now that i think about it... especially since the cancer i have is 'advanced'

    It will be a tough road ahead, i would do things you enjoy doing NOW and i'm even talking about the little things like EATING. Eat your favorite foods, over indulge do whatever it is you can that makes you feel good. Radiation made me lose my taste buds (they willl come back) and it has been just AWFUL not being able to eat. I never thought i would miss food so much.

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    #12
    I was thirty days from

    I was thirty days from initial discovery to first treatment, rad/chemo, no surgery.  My kid is an EM doc, he made the call.  It was an accident at a tapas bar, just a casual look when I said I had a sore throat.   Be careful on your second opinion choices, one of his idiot buddies wanted to do surgery with a steak knife.  4cm tumor on my right tonsil, reportedly seemed to block half my throat. They couldn't understand how I don't look down my throat very often.  This all was in Penn, I live in Colo, so I spent the next week driving the Blue Ridge and Shenandoah parkways on the way home.  Mixed on that, the Shenandoah is very engineered, plus the east just has too many trees.

    At home the very good people at Kaiser-Lonetree made an accurate diagnosis and came up with a [rough draft] treatment plan in about 3 hours (they know their stuff, and this is now all too common a disease), tho they went thru the motions of waiting for lab results. I seem to have been an obvious patient.  I don't know that extra time leaves you better or worse for what comes next, but I don't think an extra  few  weeks increases the risk.  Once you start treatment the risk is no longer the cancer, the risk is in the treatment.   I had seven weeks of treatment, at seven months post I am just now at the point where I feel I can begin to do field research again.  Loading a 40 lb water jug onto the truck today took all I had.  

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited July 2017 #13
    Showed the lump on my neck

    to the Dr. at Urgent Care the first week of January....couldn't get in to see an ENT till first of March who confirmed I had cancer....first treatment was 21st of April.  Waiting around for a while is pretty par for the course, so eat, eat, eat!!  Don't worry about weight gain, cuz it won't be on you very long :).

    p

  • Fritz
    Fritz Member Posts: 106
    #14
    50+ days

    Diagnosed tonsil cancer 3/1/16. Confirmed with FNA on 3/11/16. Next came scans in late March. Surgery for tonsil removals and neck dissection on 4/20/16. The worst part is feeling as though it is just growing and growing during the wait.  After surgery, 6 weeks to allow surgical areas to heal then 33 rads and 6 Cisplatin treatments.

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