My name is Keleigh. My father is the one with cancer. He was diagnosed right before Christmas 2013. He is not the easiest to get information from and cannot even tell you his doctors name. I have since found out all the doctor information and received the following:
He has squamous cell stage IV.
He has to have a cardiac cauterization.
He needs to have his jaw and lymph nodes removed.
Then he has to have radiation and chemo.
He had the cardiac cauterization yesterday. It revealed a completely calcified valve and 2 arteries that are 100% blocked. The doctor says his heart won't make it through surgery. He has an appointment this coming Wednesday 4/23 to see what else can be done. Other than the cardiac cauterization, he has not received any treatment and it has been 4 months since diagnosis. After reading some of your posts, that seems a little lack on the part of the doctors.
I guess I just need to know what to expect. I have no experience with cancer until now. I do not know what else can be done. I don't know what to expect. I just want to be prepared for the unknown. Any suggestions or help would be greatly appreciated.
Keep in mind I am NOT a doctor! There is wisdom in keeping due diligence with the docs but a delay at this point may be the right thing. From strictly a cancer treatment perspective the stronger he is the better he will tolerate treatment. It may be that the docs decided there was something to be gained with a delay.
Do not be afraid to ask them questions and they should have answers.
Hi Keleigh - You've found the right place for all the latest information on oral cancer plus some very knowledgeable and compassionate people to provide support and helpful suggestions. I'm so sorry to hear about your father's diagnosis. Has he been treated at a CCC (Comprehensive Cancer Center)? It is really important to have a doctor who specializes in treating oral cancer patients so that your father can receive the best care possible. Until the appointment on Wednesday, do check out the main pages of this forum starting with the diagnosis section which could help you think of a list of questions to ask the doctor:
http://www.oralcancerfoundation.org/discovery-diagnosis/It helps too, if your father has other people go with him to the appointment to help remember what was said. I'm sure others will be along with more suggestions who may have experience that more closely resembles that of your father. Hope things go well on Wednesday.
Hi Kaleigh - welcome to the family. We've all been through oral cancer either as a patient or as a caregiver so we have plenty of people who will help you get through this.
I expect they will want to do the jaw surgery and lymph node removal before starting radiation or chemo. But, of course none of that will likely happen until he regains strength and who knows how long that will take. Good nutrition and hydration will help him regain strength the fastest and that is something under your control, so concentrate on that right now. I hope he is cooperative as to nutrition. If he is not then ask about it here on the forum and talk to his doctors and nurses.
Outside of that there isn't a lot you can do right now except continue to educate yourself. The forum and the OCF website are both excellent sources of information. All of us were totally in the dark about cancer when first diagnosed, so we were all in the same place you are right now. In the beginning it was a steep learning curve for all of us, lots to learn in such a short time. But we all got through it and you will too. It just won't be easy and how receptive your father is to suggestion and advice will make it easier or harder as the case may be.
Of course you have to figure out how you can get the advice he is currently getting via his cell phone. Maybe the point of contact needs to be your phone instead of his, or he needs to be willing to turn his phone sideways so you can hear the phone calls too.
Of course you will need a spiral notebook or tablet to write down all they tell you/him and to write down the thousand questions you will think of over the next month or two. It's impossible to remember all of them. I had sections in my notebook for each doctor, a section for this forum, but perhaps most important of all is a section for the nurses. For me, their answers were most helpful.
It won't be easy, but you will get through this. We will help you do that.
Good luck
Tony
Welcome to OCF! Im sorry your father is facing such a hard battle.
As far as timing goes, I was diagnosed with Stage IV SCC in my mandible in early June. My doc gave me a calendar and said select a surgery date up until 12 weeks out. He said in 3 months there will not be much change happening. I was doubtful but put my faith in him and chose right after my son turned 20. Im explaining this so you can see your fathers situation isnt that far from the norm. Plus with his heart issues there is good reason for the extension.
A mandibulectomy (jaw removal) is a huge surgery. It will be at least 6 hours long with most Ive seen on here being 9-12 hours. Mine was 10 hours. Its going to be a very long day but the doctor should come out from time to time to give you updates to help ease your mind.
If your father can eat I suggest have him eat all his favorites now. It may be some time before he is able to eat like he normally would. He may need physical therapy with a speech pathologist to help get back to eating and speaking clearly.
If he will get a trach, ask for a possey muir valve trach so he is able to speak. This can be very important! If you dont ask, you wouldnt automatically receive this type.
There are several here including myself who have been thru this. Stick with us and we will help your father (and you) get thru this. Best of luck with everything!!!
Gosh, you really have some huge challenges right now. I understand that you are feeling scared and pulled in many directions. I agree that one of the best things you can do is involve your children in the day to day household duties. Coming home and seeing that the dishes are done and put away, the floors wept, the bathrooms clean, laundry washed and folded will make all of you feel better. Your children can support you with preparing meals, too, so that you have the time and energy to pursue the healthcare issues. You will feel more clear headed if you can be relieved of the daily tasks.
You may have to be a squeaky wheel and keep persisting until you get someone to take notice and respond to your unique situation with your husband. You know him better than anyone. Trust yourself to make decisions based on how well you know him. If getting a PEG will insure that he will get the nutrition he needs, go for it. You are the caregiver.
Just before my husband started radiation, he didn't want a PEG. But I felt strongly that he should have it. If he didn't use it, no problem. He ended up having it for 2 years and thank God he did. He had a lot of setbacks and the PEG was a lifesaver.
Trust yourself. Keep making noise until someone listens and acts in your husband's and your best interests. I wish you well and take one day at a time.
Keep posting about how things are moving along and how you are doing. This is a difficult time for all of you. You can count on many here for support.
Update:
My father had double bypass on 4/25. He spent 9 days in the hospital afterwards. He was released with the knowledge he would be having his mandibulectomy within 3-4 weeks of the original surgery date of 4/25. He was to have hospice go to the house daily to check on him and help with pain meds. No one ever called or came by. It is now 5/30. He hasn't even had a follow-up with the heart surgeon to release him for his mandibulectomy. I called them 2 days ago and asked them what was going on. They made an appointment for this Monday to clear him. I notified the cancer doctor and they had no idea the surgery had been done. In the meantime, the cancer has grown so much that his mouth is almost grown shut. He has lost 15 lbs since 4/25 because most foods burn when he attempts to eat. He is having a lot of difficulty swallowing. Sometimes you cannot understand what he is saying when he speaks but he has made it known that his tongue doesn't fit in his mouth anymore. The cancer started in his gums. It is now the entire bottom of his mouth and starting to spread back to his throat. I got him Fentanyl patches and a nerve blocker to help with pain. It's working really well. His painful episodes where he would just cry have gone from 10-12 hours at a time to 1 hour. I'm just having a hard time watching him suffer and wondering what is taking the doctors so long to do what they said needed to be done in late December/early January.
Im very sorry to hear your father is suffering so much. Sometimes the caregiver must be an advocate for their patient or they dont get the attention they need.
If your father is not able to eat and losing weight rapidly, ask the doc about a feeding tube. He could get a nasal tube right away, it is inserted in the office without any surgery. He probably will need a more permanent feeding tube due to the upcoming mandibulectomy. Rapidly losing weight is not good for the patient, he is losing not just weight but muscle too. Proper nutrition is important in getting him thru the mandibulectomy. The doc will probably have your father see a gastro doc to get this started. Or maybe they will do the feeding tube at the same time he is having the mandibulectomy done.
Yes ideally you don't leave this stuff up to the drs and nurses. You call immediately if things go on for too long - ideally when hospice didn't show someone should have been on the phone immediately to find out what is going on. Only family can advocate well for a loved one. That's all done now start making calls and kick them into high gear do not take a long wait date for the surgery - start making noise - someone clearly dropped the ball and that should be made known to everyone you are dealing with this way they will get him in as quickly as possible, 6 weeks is the normal wait period after surgery for healing but they could have prepped him and. Gotten him ready for his mandiblectomy at the ver least they should have have been monitoring him - hugs and make noise.
Hello Keleigh
I am taking care of my mother. Her Mandibulectomy was done on March 25,2014 so its been about nine weeks since her surgery. I had the same problem with getting set backs for the surgery. A clearance was needed from her cardiologist before surgery. The Cardiologist then insisted on a stress test before he would release her for surgery. Then it was waiting on the insurance approving payment. Then getting her in for Pre-op seemed to be delayed. But I was surely on the phone every other day with the Surgeons office pushing the issues . The surgery took about 7 hours. Its a big surgery. My mom stood in ICU for 4 days and then in a regular room for 5 days . A total of 9 days in the hospital. She started her treatments 4 weeks after surgery and now she only has 1 week left to go. She is really sick here at the end and don't know if she can make it the last week. Prayers to you and your father. I hope all goes well. He will need a lot of taking care of as he recovers from surgery and starts treatments. Hopefully you will have some family help along the way. Good luck and Good Bless.
Keleigh,
I also wanted to tell you my mothers cancer started in her Left bottom Jaw. It was stage 4 when diagnosed . Her Left bottom Jaw was removed.