Oral Cancer-Confused Need Advice
I am on here to find answers about my Dad's cancer he has been fighting for seven years. The doctors have been so vague during this whole process to the point we don’t really even know what type of cancer it really is. My Dad is 55 years old, a marathon runner, a successful business man and an all around down to earth guy that everybody loves. He was diagnosed in October 2004 with a little tumor in his cheek the doctors said it is Squamous Cell cancer they did surgery removed the pea size tumor and sent him on his way. No chemo, no radiation nothing said this type of cancer doesn’t return. Well three years later he felt another bump in his mouth not the same place but more on the bottom of his mouth by his jaw. Went in had it tested and of course it was cancer, they did surgery again removed the tumor and removed a lot of the area around it just in case they thought they missed something. The doctors then decided that they were going to hit that area of his face with radiation. It was intense radiation but they said if he did this there would be no way the cancer would return. A little less than a year later he was not healed from the radiation, and his jaw bone was exposed and he was having major issues with that. He stated going to the doctor in October 2010 about once a week due to the pain he was having with the jaw bone, and then he stated getting infections in his cheek. In February of 2011 his jaw bone actually broke in half it was to the point that he could not even eat he was just drinking milk shakes and smoothies. The doctors finally said well we can go in and replace the jaw bone with a bone in your leg and hope the bone takes. Then April of 2011 he went to the doctor because he felt yet another bump in his cheek they tested it and some of the skin around it. And yes again it came back positive to cancer. This time the doctors decided to perform this radical surgery where they basically took off his whole cheek took out the bone my dad went through a 15 hour surgery and they reconstructed his whole right side of his face. They took a muscle from his back and attached it to skin from his back and put it on his face. My dad is so strong and the outside of his face has been healing wonderfully but the swelling is out of control and the muscle in his face is moving and his eye is really swollen. My dad had this surgery May 10, 2011 and on June 16, 2011 my mom took him to the ER because he was so swollen, they did a CAT scan and said that he has pockets of fluid that needed to be drained so they were going to drain it. When they went in they said it didn’t look like fluid they tested it and the cancer is back. They waited all day long to get answers and talk to the doctor, he finally walks in and says “the cancer is back, it is inoperable and we are going to do chemo to give you some time.” No time line, no sorry I have been working with you for seven years we are going to do what we can, no hope in his voice, no compassion for what he is saying to us nothing. Then they sent him home said we will contact you on Monday and let you know if the insurance went through and we can go ahead with the chemo. So we are sitting here once again with no answers, no idea what to expect feeling defeated. This poor man has been through hell and back, they have done this totally radical surgery he is on a feeding tube, a trach, can’t talk, can’t eat, and is now given the news that it did nothing for him and there is nothing they can do for him sorry bye. I am just looking for some answers, support or has anyone ever heard of this before, I mean supposedly we are with the best of the best doctors but they give us no answers, and really make us feel very defeated. I am trying so hard to be hopeful but we have been let down so many times, it is heart breaking to see my dad go through all of this and to watch him suffer . I have been reading every ones posts and my heart goes out to everyone who has to go through this. I am thankful I have my mom, my sister, and my wonderful husband and my 16 month old son. It is so hard to go through this with a child, I feel so bad for him. My dad was so happy when he was born, my dad only had girls and he was so excited that he finally got his boy. He keeps saying he is so scared that my son is not going to remember him and it is just such a sad and devastating situation. I wish there was something I could to but I feel helpless. Has anyone had a similar situation to this, do you think he has been misdiagnosed, any recommendations or advice would be greatly appreciated!
Amanda
Comments
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Second opinion right away
I'm so sorry to read this.
Others will post I'm sure...but it sounds like a second opinion is critical at this stage and to get one from a major teaching/research hospital such as MD Anderson in Houston, Memorial Sloan Kettering in NY, Mayo or Johns Hopkins.
Thoughts & prayers for your dad.
Chuck.0 -
AgreedRushFan said:Second opinion right away
I'm so sorry to read this.
Others will post I'm sure...but it sounds like a second opinion is critical at this stage and to get one from a major teaching/research hospital such as MD Anderson in Houston, Memorial Sloan Kettering in NY, Mayo or Johns Hopkins.
Thoughts & prayers for your dad.
Chuck.
My first opinion said I had two types of cancer. I went to see another Dr and he agreed where they would think that, but in his opinion, there was only one, but to send the specimen off to Pitt University for a specialist to study. The specialist' report came back saying pretty much what the second dr said. That saved me from chemo, though I still had to have radiation.
Long story short, get a second opinion. Also, if your current dr is not living up to your expectations such as giving answers or timelines, do not be afraid to move to another dr. They are there to serve you, not act as they please.0 -
Thank you so much for yourBeacherBum said:Agreed
My first opinion said I had two types of cancer. I went to see another Dr and he agreed where they would think that, but in his opinion, there was only one, but to send the specimen off to Pitt University for a specialist to study. The specialist' report came back saying pretty much what the second dr said. That saved me from chemo, though I still had to have radiation.
Long story short, get a second opinion. Also, if your current dr is not living up to your expectations such as giving answers or timelines, do not be afraid to move to another dr. They are there to serve you, not act as they please.
Thank you so much for your advice and replies. We are from Chicago and the cancer is moving fast, does anyone know of any top oncolgists in the Chicago land area?0 -
SorryAmanda.H said:Thank you so much for your
Thank you so much for your advice and replies. We are from Chicago and the cancer is moving fast, does anyone know of any top oncolgists in the Chicago land area?
I'm down in NC. If you're down this way I can help
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ChicagoDoctorsAmanda.H said:Thank you so much for your
Thank you so much for your advice and replies. We are from Chicago and the cancer is moving fast, does anyone know of any top oncolgists in the Chicago land area?
Amanda: I was treated at the Cardinal Bernadin Cancer Center at Loyola University Hospital in Maywood. I had my surgery there on Jan 3, 2011 and just finished 6 wks of radiation there as well. I will PM you with my personal info and the doctors' names.
one was an ENT Surgeon an the other was a Radiation oncologist,but there was a whole of doctrs at my disposal.0 -
AmandaIngrid K said:ChicagoDoctors
Amanda: I was treated at the Cardinal Bernadin Cancer Center at Loyola University Hospital in Maywood. I had my surgery there on Jan 3, 2011 and just finished 6 wks of radiation there as well. I will PM you with my personal info and the doctors' names.
one was an ENT Surgeon an the other was a Radiation oncologist,but there was a whole of doctrs at my disposal.
Chicago area: Northwestern has the highest-rated ENT center. U of Chicago and Rush also have top-notch centers with great reputations. Think Rush is a not-for-profit center, so you may wanna check them out. Have an excellent surgeon, also, and located alongside the Ike for easy access.
kcass0 -
First I would like to thankluv2cut1 said:I am so sorry
For all you have been through! It was our third opinion that was a godsend for us. Here is to hoping that you get all of your questions fully answered so you will feel confident with the path you choose.
Praying for you and your family.
Myka
First I would like to thank everyone for taking the time to share their thoughts and advice, it really means a lot! So I have yet another question, the oncologist called today and gave us a list of the chemo he will be getting. Carbopalin, 5FU, Erbitux has anyone heard of these?? Any comments on them good or bad, suggestions appreciated!!! Thanks Again!0 -
Lots of CompanyAmanda.H said:First I would like to thank
First I would like to thank everyone for taking the time to share their thoughts and advice, it really means a lot! So I have yet another question, the oncologist called today and gave us a list of the chemo he will be getting. Carbopalin, 5FU, Erbitux has anyone heard of these?? Any comments on them good or bad, suggestions appreciated!!! Thanks Again!
Amanda,
The vast majority of people here who have chemo have had Carboplatin or Cisplatin. Lots of folks have had 5FU; many have had Erbitux. I had Cisplatin, Taxotere, 5FU and Carboplatin. I think they all go in by IV. I think that all of us who got 5FU had it administered over a period of days, and the other chemos were done via IV over the course of 3 to 8 hours. Side effects are varied and individualized. Some folks get head rashes with Erbitux, some don't. Nurses at my chemo lounge said my induction cocktail (Cisplatin, taxotere and 5FU) was a "rough" one - dunno what they meant by that - I think a lot of us experienced many of the same side effects, even though we may have been on different drugs. Most of us had a marked decrease in appetite, tiredness, and fluctuating white cell counts. Some develop mouth sores, some have episodes of "chemo brain" (foggines), some have insomnia, nausea, personality shifts, some develop GERD or acid reflux, some have diarrhea or constipation (depending on the day), some get rashes or peeling skin on extremeties, some get neuropathy (numbness and/or pain and/or tingling) in their hands and/or feet, some develop fevers and/or infections - there are many other side effects a patient may or may not experience.
I recommend a few things - lots of water intake is first. As for eating - treat it like a prescription - he needs to just eat - wanting to eat has nothing to with it. Always keep his medical team up to date on what's going on. Most, if not all, negative effects he may experience can be eliminated or lessened - his docs can help a lot with prescriptions or advice to help combat side effects. It was easiest for me to track my prescriptions on a spreadsheet - then, the times I did have to go to a hospital, I had a current list of medications. During part of my treatment, I also tracked side effects I was experiencing, as well as water and nutritional input (and output sometimes). I did find that during part of treatment, left to my own devices and not tracking what I was taking in, I sometimes did not take in enough food and/or water. Sufficient food and water intake can make a huge difference in how he feels. Sometimes during treatment, I just didn't think about it - wasn't hungry, and thought I was taking in more than I actually was. Also know that if he goes through any rough spots, you can not only report to the docs ASAP (I recommend this highly), you can also come here, post a question, and know that there will most assuredly be several people here who've "been there - done that".
As for good comments - I got clean scans in April. Also - chemo for me wasn't as bad as I had imagined it would be (based on those pitiful, emaciated, pale with dark bags under the eyes people on made-for-tv movies). I was very pleased to discover that I did not experience many of the potential side effects listed for the drugs I was on. Those lists are long, and intimidating.0 -
SECOND OPINION
Hi Amanda
The others have supplied good information, and all I can do is agree with them. Definitely see someone who is with an NCI certified facility. Theses facilities are all on the cutting edge of treatments.
Positive thoughts from my family to yours.
Be strong
Best!!
Mike0 -
2nd opinion
Amanda,
my heart goes out to your dad and your whole family. I don't have alot to add other than when I got my tongue cancer diagnosis, I turned down the surgery and opted for just radiation and chemo. all my docs said I was smart to turn down the surgery. When I asked why they said I didn't need it but I needed the chemo and the radiation.
I feel we are all guinea pigs in a way. WE are the consumers and we need to arm ourselves with lots of questions and demand answers and 2nd and 3rd opinions.
The head of my oncology team WAS the surgeon and he didn't press me on the issue.
I met a young woman with a similar story as yours. She had only surgery and now 2 and a half years later her neck is filled with lymph nodes bursting with cancer. Now she is going through surgery and radiation and chemo.
I will think of you dad and send lots of good vibes his way.
Please keep us updated on his journey.
Nancy0 -
5FUAmanda.H said:First I would like to thank
First I would like to thank everyone for taking the time to share their thoughts and advice, it really means a lot! So I have yet another question, the oncologist called today and gave us a list of the chemo he will be getting. Carbopalin, 5FU, Erbitux has anyone heard of these?? Any comments on them good or bad, suggestions appreciated!!! Thanks Again!
I had 5Fu administered via pump and the cisplatin every three weeks via a port in my chest. 5FU didn't mess me up too much but the cisplatin (DDP) was very harsh. Add rads on to of it all and I was having "peachy" days - NOT :>)
Good luck with it all.
Denny0 -
Your dad
Hi Amanda,
In 2011 I was told I had tongue cancer. 37 weeks of radiation treatments and related surgeries I have continued to live life and reach out and help others with similiar struggles. Unfortunately I had to learn a great deal on my own. What I have learned and applied has made a world of difference on my healing jurney.
At minimum its scary and full of "what ifs". Take heart, stay on top of your mind and don't let it take control of you and your loved ones with fear. Fear generates paralysis. You have good support here.
0
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