Is one month too long to wait to see oncologist after biopsy results?
I just got my biopsy results on June 2, and my report was faxed to Johns Hopkins by my oral surgeon. JH called today and said the first available appointment for my consult with the specialist that my oral surgeon recommended is July 5. His office told me that he will see me that morning and decide which scans/tests to order, and I can have those in my home state. If surgery is recommended, the earliest available surgery date would be at the end of July. Is it typical to have to wait a month between a biopsy report and an initial appointment with the oncologist at a facility like JH? Should I be looking for alternatives at this point? This delay worries me.
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When it comes to cancer, the
When it comes to cancer, the sooner the better. I waited one week to get into Sloan Kettering in NY. 3 weeks later, I was in surgery.
If there are better options, I would seek them out. Unless, JH is your best option, you may have little choice.
If that's the case, get on them and insist they assign you to someone else. The squeeky wheel gets the oil in life. Best of luck to you.
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I read that again, and today
I read that again, and today being only June 6, another month would not work for me at all. Then, another month for surgery? They need to take you more seriously and you must be your own best advocate, when it comes to your health. I would be seeking other options. I know this oncologist comes recommended but that does not mean there are others just as competent, if not more.
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I would not wait that long.
I would not wait that long. We got biopsy results on October 19th, had an appointment with the surgeon on Oct 26th, had scans ordered, and had surgery the first week of November. And this was with one of the best docs/hospitals in the nation- UT/MD Anderson. With canicer like this, you don't want to wait that long. You really don't.
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I had to wait.........
It can take some time, but you are ok. The reason I say that is if the tumor was growing very fast or it was causing you more harm, they would rush you in. I do understand. Approvals can take several days and they need the tests to make the right decision for you. Now if they have any cancellations they may call and get you in earlier, so you might want to consider that if you get a call and need to be there the next day. I was going to have to wait a month just for the local ENT. It does seem like a long time, but they do have the report so you should be fine. It is just so hard waiting.
My Doctor could not do a biopsy as he was afraid he could not stop the bleeding so he only did a brushing, but he got it that was July29, Did follow up Aug 20th, Tumor board Aug 29th,[I was to see the local ENT Aug 28th] follow up with surgeon Sept 23rd,and was told I was going to have surgery Oct 2nd. and that he would not wait any longer because I was aspirating and didn't know it. I had small amounts of food and liquid going into my lungs, my epiglottis wasn't working right, and the tumor was above the top of my vocal cords and pressing on the left one. Because of my lungs, surgery was my only option and the only way they would do that was to remove my larynx.
I would stay with JH, they are rated much higher in ENT, and very close to the same in Cancer.
http://health.usnews.com/best-hospitals/rankings/cancer << National Ratings.
Bill
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Does anyone have recommendations at MD Anderson, Sloan, or Mayo?
Wow... Thanks for your very valuable input. I had a feeling most people would consider four weeks too long to wait. I called the oral surgeon who referred me to the JH doctor. His assistant is going to speak with him to see what he thinks. It turns out the JH doctor only sees patients on Tuesdays in June! And really, what is the oral surgeon going to say? He is the one who rushed me to get the biopsy ASAP, saying time was of the essence (and that was before we knew it was cancer), so I don't see how he would be able to turn around at this point and say, "Waiting a month just for the consult isn't bad." Having spent the last couple of hours researching online, it seems that MD Anderson, Sloan-Kettering, and Mayo are higher-rated than JH for cancer. Can anyone here recommend someone at any of them?
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YOU'LL NEVER KNOW IF IT WAS TOO LONG TO WAIT
Four years and a batch of radiation treatments later, I have one lingering doubt. My initial diagnosis of tongue cancer was by a local ENT. That was in late March. It took about two weeks to get an appointment with a surgical oncologist at Sloan Kettering in New York. He advised surgery and it took about four weeks to get a hemiglossectomy and neck dissection t scheduled. Despite all the talk we always hear of catching it early, I was told the wait was OK. I was told if all the nodes tested clear, I would be done with my treatment. One, and only one, of the forty odd lymph nodes had some “borderline” evidence of cancer, and so the recommendation was for radiation.
I have a batch of side effects that I live with, and I attribute most if not all the side effects to the radiation rather than the surgery. I can’t help but thinking how much better my life would be if I didn’t need the radiation. And that of course goes to the question of when did the cancer start evading the lymph node?
I’ll never know. The doctors will never know. To me this is and will remain a nagging mystery. If I had a do over, I’d push more aggressively for earlier treatment, although given the realities of the current state of health care and insurance, this may be easier said than done. Good luck whatever you decide.
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time, time, time
SylMarie,
Sooner is almost always better. It depends on how aggressive your cancer is. All the facilities you mentioned are top notch and all will treat your cancer correctly.
I would not select my oncologist solely on speed. You want a team that aims to win and is easy to talk with about cancer, treatments, side effects, etc…
You do know that you will be making the decisions concerning your treatment. I was given choices and selected surgery, radiation and Erbitux. You can throw everything at cancer or dance around the fringe.
By getting cancer your body has already shown a chink in your defenses, so be prepared to go after it.
We have each been in your shoes and know how you feel. Believe me, you get smart fast. Ask any question you can think of for your team.
Provided you have rads, start drinking water and swallowing often.
Best of luck from Oregon,
Matt
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I'm calling Sloan, AD Anderson, & Mayo. So many names!!
I have called Sloan-Kettering and they said they can see me within a week if I get my pathology report faxed to them, but I would see the next doc on rotation unless I give them a name that I prefer. If it's someone highly in demand, I might have to wait longer. So many names! My next call will be to AD Anderson in Houston, and again, I have no name there. My third call will be to Mayo, possibly. I guess this means I have to check each and every name in the Head & Neck Cancer department, their credentials, and the doctor review sites online. Did anybody else find this process crazy and daunting?
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Sloan selected Dr. Ian Ganly
Sloan selected Dr. Ian Ganly as my oncologist. You can google him and you'll see his credentials. Top notch, well-respected and a great bedside manner. Very happy with him and his team.
They say you can't go wrong in a place like Sloan-Kettering.
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Time
SlyMarie,
Like the others, I think that is way too long to wait. I saw a local ENT first to find out what was going on, I felt a tiny bump under my jaw one day. After taking the steps to make sure it wasn't just an infection, discovered it was Base of Tongue cancer. ENT told me on a Thursday, mean while, he had already scheduled me to see a top ENT Surgeon in Philadelphia (University of Pennsylvania) on the following Wednesday. U of P is roughly a 45 minute drive on a good day, so we are lucky to be close to a good Hospital.
My wife and I met the Surgeon and felt very comfortable with him and his team, so Surgery was the following Monday. As mentioned above, I had at first one Lymphnode involved, but after the neck disection, there was more. So, Radiation was added to my plan of attack. That was over 11 years ago.
My Best to You and Everyone Here
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Rating
WMC said it right concerning the grade of the tumor. If it was a fast growing one they would probably have rushed you in. Mine was a very slow growing one and I asked for a month off between my tongue surgery to remove the tumor and my neck dissection to take out several positive lymph nodes. It is all about the grade of the tumor.
If in doubt, get a 2nd opinion.
Sorry you have to deal with all the treatments we here have already went through. You'll come out the other side, albeit weighing less and very sore. But you'll be okay in the long run. You have to think that way or it'll drive you nuts. The power of positive thinking!
Tom
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Might want to slow down and think about this.SylMarie said:I'm calling Sloan, AD Anderson, & Mayo. So many names!!
I have called Sloan-Kettering and they said they can see me within a week if I get my pathology report faxed to them, but I would see the next doc on rotation unless I give them a name that I prefer. If it's someone highly in demand, I might have to wait longer. So many names! My next call will be to AD Anderson in Houston, and again, I have no name there. My third call will be to Mayo, possibly. I guess this means I have to check each and every name in the Head & Neck Cancer department, their credentials, and the doctor review sites online. Did anybody else find this process crazy and daunting?
This is just my opinion, but Head & Neck cancers cover many different locations. Tounge, tonsils, jaw, soft palate, throat, larynx, vocal cords. Your doctor said, surgeon, and was setting you up with JH for a reason. Yes Sloan rates just a little higher in cancer, but much lower 43 in ENT and JH is #3 and if you have surgery you want a surgeon that is best in ENT. Right now you are in , Get it out now mode. I was as well. I was told I had cancer by my lung doctor and the next day he went on vacation for a week, Scarred the hell out of me. I went the next day to my PCP and talked with him, why, he can't do anything but calm me down which he did. Things are working right now in the background you don't know about. You have many things to consider like they most likely want to do radiation as well. You go to Texas, can you stay 6 weeks for radiation? Or will you have to go back home and have it done by a local? Chemo as well. Many will say that where you go will get the radiation set up so you can have it local, but is it really the same.
You have everything racing through your mind all at the same time, and it is all over the place. I was the same at first. You can always get a second opinion. I settled down and had some time before my follow up visit. I have two places I wanted to go to. I had to consider my wife and her making the drive. When I met with my doctor and talked to him he said he wanted me to go to Stanford and explained why. Stanford had a much better ENT department and that is where my cancer was. Stanford was my first choice for me as well. I wanted this doctor there as he was the head doctor/surgeon/oncologist. For me, it was the right choice as I only had surgery, so I never needed oncology, my lungs were too bad and I would not survive. Only 5 people thought I would make and that counts my doctor, myself, wife, and only two friends from 250 at work. My Son and Brother, Father in law drove 300 miles and would not leave until I was out of surgery, he was 89 and stayed all 8 hours until I went to recovery.
Write all your questions down and leave room for the answers. When you see the doctor just hand them to him. If you ask the first question, when he answers you will go blank and forget the rest. My doctor wrote the answers down as he explained them. You can also use your phone and record it. Take someone with you to drive and help listen to what he says. Do you know where the tumor is? how large is it? Mine was 3cm x 2.5cm, the size of a large grape or the first digit of your thumb.
Again, this is only my opinion based on very little knowledge of where and how large and it lymph nodes are involved which can change everything. It took many months to even find that I had a tumor, they were just trying to see why I was coughing up blood. When my lung doctor called Stanford he said this was urgent to get me in fast, and I was there the next week. They only do the tumor board on Thursday.
Bill
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Hopkins now can see me 6/22; surgery 6/30
You all confirmed what I was afraid of, and my oral surgeon was also concerned. He got me in sooner to see the surgeon at Johns Hopkins. Now it's June 22, with pre-ops on June 23, and surgery scheduled for 6/30. WMC, thanks so much for expressing everything I've been feeling and thinking! To answer your question, I have not had scans yet. The punch biopsy was done of my upper left ridge (gum tissue). It came back "invasive moderately differentiated squamous cell carcinoma (P16 negative)." The oral surgeon told me if they can get clear margins, I may not need radiation or chemo. However, until they get in there, who knows, right? I guess I will find out more when I meet with him on June 22. Getting scans in the next few days which I will take with me to Johns Hopkins. The coordinator told me the surgeon expects it to be a 3.5 hour surgery, with two nights in the hospital. We will be traveling from South Florida to Baltimore for this. If I need additional treatment, they said I could get it here at home. Thanks for all the great input.
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I am glad they got you in
I am glad they got you in sooner. The scans will also be important and also surgery to see if it spread to any nodes. That will be a critical piece of the puzzle. Best of luck and my prayers going out to you for good scans, clean margins and a safe trip to Baltimore!
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Good girl!
You are being pro-active and assertive and that's great! I agree with all the posts above...cancer is aggressive and you can't take a leisurely approach. I was in surgery two weeks after diagnosis. Fingers crossed for good results, keep us posted, honey.
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