Good morning- My name is Sarah and my 48 year old sister -Penny -was just diagnosed with tonsil cancer so far- I don't know the stage yet. It's all happening so fast! She had a sore throat for 3 months or so - thought it was Post nasal drip, but finally went to the Dr. 8/25/06. There was a lump on the very back of her tongue. She had biopsy, ct scan, mri and pet scan all last week and started chemo Friday night 9/08. She has to see dentist I guess prior to beginning radiology.
She has a feeding tube (actually had to swallow it on Wednesday) since she is 119 lbs and is 5'9"
Penny says she is so thin from stress that's all. The Dr. says she will have the tube thruout her treatment. My belief is that she is not informing all of us exactly what the Dr. is telling her- what questions should we have answers to by now? Penny says the Dr. has only said the tumor is "sizable"- what's that mean? Also, the Dr. said there wasn't time to go to Dana Farber-so this would leave me to believe it is rather advanced. I'm in New York with 2 little children and feel helpless since she is in Massachusetts. I want to stay informed and be helpful so please any and all advice and help as to what questions should be posed would be helpful-as well as all of your kind thoughts and prayers. My sister is truly a remarkable woman however has been stuggling as of late- she is so tired of her present lifestyle(prior to getting ill) and I'm worried she may not fight as hard as she needs to- Thanks for any comments-
Sarah
Sarah --
What a difficult time this must be for you. Your sister is lucky to have you in her corner!
Based on what I've read here, the major centers can get patients in very quickly if the situation demands it. Have you or other family members tried calling Dana Farber and talking directly with the people there to find out how soon she could be seen? I expect that whoever calls will need specific details about her condition to emphasize its severity (i.e. size and location of tumor, how the cancer was staged, what has been done so far, etc.) -- and should be prepared to send off, ASAP, copies of test results, doctors' notes and even the biopsy slides themselves. (Labs will package them for a safe arrival via Express Mail/FedEx/etc.; someone near your sister might have to pick up the slides from the lab and send them off.)
At the very least, I'd suggest that she get her treatment plan reviewed by the specialists there -- or at M.D. Anderson in Houston, Sloan Kettering in NYC or Johns Hopkins' Kimmel Center in Baltimore, to name a few. There are people on these boards who have done that after getting treatment plans from their local doctors, and I am sure they will chime in on how that works.
Getting that consultation could reinforce that what she is already doing is what the top people in the field would recommend, or could open up other approaches that the local folks might not have considered.
All the best to you and your sister --
Leslie
Thank you- I am forwarding these replies to my sister's daughter and hope someone up there will act upon this - I just now learned one of her chemo drugs is Taxol. I thought there were others more effective than this- guess I should go to a different area on the boards here maybe to research that- again thank you for your kind thoughts-
Sarah
Sarah,
I'm skeptical about the comment that there "wasn't time" to go to Dana Farber. (Full disclosure point: I DID go there, albeit a good many years ago.) As Leslie said, they are accustomed to dealing with the urgency of cancer diagnoses, and I have to believe that someone there could review her test results in a very timely fashion.
You didn't mention the type of facility where she is being treated -- it could make a difference whether she is at a smaller community hospital vs. a major hospital with a significant cancer focus. Having read the stories of MANY patients on this site, I've become convinced of the importance of getting to an experienced head and neck cancer team at a major cancer center as soon as possible in order to develop a solid treatment plan.
Cathy
Thank you she is at UMass Medical/Memorial in Worcester-I too think the "there isn't time" comment was fishy- I am forwarding this to My sister's daughter - thank you- I am hoping to have more details after somebody up there gets more facts from either my sister or her family! So frustrating being the younger sister farther away! Nobody has even mentioned the size of her growth or anything.
Sarah - Welcome to the forum. It is good that you are beginning to question the "there isn't time.." comment. Some cancers are very aggressive, but that should not preclude getting an informed opinion about what to do. Head and neck cancers are a bit different than many other types. For this reason, it is VERY wise to consult with the cancer care centers that have dealt with this condition frequently.
There are many things to think about: Surgery or not; radiation - how much, what type, etc.; types and timing of chemo; dental concerns with the radiation; etc. Most new patients are so overwhelmed with the speed of events that they fail to ask good questions, or fail to be appropriately skeptical of suggested treatments.
There is more than one way to treat cancer. Some advocate surgery, some do not. Some use lots of radiation, some less. Some use these drugs for chemo, some use those drugs. You don't need to know which ones are right for her - only that whatever decisions are made should be questioned. Why these drugs? What other treatment is possible - so why this one? Getting the docs to defend their decisions helps you understand more about what is going on, and reassures you that they didn't pull a treatment plan out of a hat.
Get the insurance people tuned up and running so there are no surprises later. Get serious about nutrition and hydration NOW. Don't panic. A cancer diagnosis does NOT mean "the end". There are MANY, many people who win this battle - more every day.
Sooner or later they will 'stage' her cancer. That is important info, but not critical. My cancer was VERY advanced, and I'm still doing fine three years later. Staging will help the docs make recommendations (not decisions) about what treatments should be completed. Get people involved in the decision making. Passive patients don't do very well. Active, participating, question-asking, patients do much better.
Don't worry about not knowing all the technical stuff. Ask questions anyway. There are no stupid questions about cancer. Make them tell you what they recommend, what they are doing, why, what is the up side of this action - what is the down side? Ask questions. Take a tape recorder to the Dr appointments. Take two people to listen and ask. Write things down - questions and answers. Make the docs repeat the answers until you get it - for me that was often 3 or 4 times. Docs that don't listen, or won't patiently answer questions.... are the WRONG docs. Get a different team.
More than ONE doc is needed for this. ENT, chemical oncologist, radiation oncologist, oral surgeon, dentist, physical therapist, etc. It takes a TEAM to do this well and properly.
Read this site. The home page will lead you to hundreds of pages of high-quality info about our cancer. Get informed. Do it quickly. Remember that your sister is the CUSTOMER and the docs are the SELLER. Be hard to please. Be a fussy shopper. Demand their best service. Take nothing for granted. Get second and third opinions. It can be done quickly and NEEDS to be done. Come back here often. Get you sister on here. Get her daughter on here. We can help. Really. Be strong, Tom
THANK YOU!!! THANK YOU !!!! THANK YOU!!! Today is actually the best day for my spirits yet since I feel like I am acting on this! I can only hope that those I forward this information to will ACT!!!When one feels a bit more in control it does help I'm learning! I love my sister to the end of the world- and I hope you too continue on in good health.
Sarah
Dear Sarah, one more helpful hint. Ask your niece or someone with a direct line to your sister to join OCF and get on board here. That way they will have instant6 access to tons of good information. Good for you for being so proavtive on her behalf. Amy
Thanks-actually I'm doing that right now!!! I hope you are well- Sarah