where do i start please help

hollyw80

i am a er nurse but admit i know little about oncology. yesterday i talked my mom into getting random cxr for shoulder pain. a large mass in right upper lobe, mass in her liver and lymph nodes in her chest (mediastinum and breasts) were found. no dx of ca yet but i know it will be. i am overwhelmed and need advise on what to do where to start who to talk to. she has appointed me to do all research and make beginning treatment decisions b/c of my medical background but i am still a daughter and want whats agressive but not enogh to make her suffer. we live in south side of chicago but i am willing to travel anywhere any time to save my mom. please, please help me she has a two month old grandson and i need all the time i can get with my mom. thank you and god bless

jagged

Whew!
Whew. Tough to lay this on you. Not sure I would take this all on. But then, I don't know your curcimstances.

First, is to get the doctor take on things. If cancer, it is stage IV, but what kind of cancer? Is it operative? Surgery recommended? How aggressive is it? Chemotherapy almost goes without saying. Radiation? How does her health and age factor in how she will handle any treatment? Are finances an issue?

Cancer is a big scare for everyone and it is difficult to digest all of the information at once. Take notes when you talk with the doctor, and/or record. Plan a follow up. Always think about a second opinion.

There is a lot of good information on the internet. Google words you don't understand. If chemotherapy, which drugs. You can research symptoms, etc. Come back here and post some more. A lot of people have been there and have helpful stories.

--jag

cabbott

On surgery and stuff
Dear Holly,

I'm sorry your mom is having to deal with this. Chicago is a large city with lots of resources. You could call your local lung cancer association or American Cancer Society to find the best clinics in the area. One associated with a teaching hospital, especially if they specialize in lung cancer, would be the best for the latest in treatment possibilites and success. Often with stage 4 doctors recommend chemo rather than surgery--at least at first. If it shrinks sufficiently and the patient's general health is good, they may go back and operate. The reason for this is because the surgery itself is tough. There is no good reason for any treatment if it is not going to have a sufficient payoff. But small tumors caught early are sometimes curable with surgery. Once the cancer is traveling, removing the primary doesn't have as big of a payoff. There is something called VATS surgery (meaning Video Assisted Thoracic Surgery) that I was lucky enough to have which is like laproscopic surgery on the chest that makes recovery a lot easier than the traditional sort when surgery is an option but only a trained thoracic specialist can do it. Both VATS and regular chest surgery are equally effective in terms of long-term survival and reoccurance rates. It sounds like your mom is already in stage 4, meaning the primary cancer has traveled from the organ it started in (presumably the lung) and traveled to other places (lymph nodes and liver). The doctors need to do a biopsy though to make sure of exactly what kind of cancer it is. Cancer is an umbrella term comprised of many different diseases. There are even many kinds of lung cancer even if that is what it is. The pathologist can tell what kind it is by looking at it under the microscope and by doing different genetic tests. Different medicines work on different diseases. Different chemotherapies work on different lung cancers. What will work with one kind of lung cancer may do nothing for other kinds of lung cancer, so they need a tissue sample even if they think the tumor shouldn't be removed. The tissue sample would also give them information on how aggressive the cancer is so they can determine how aggressive the treatment should be. Aggressive treatment means that it is bad for the cancer. The most aggressive treatment for the cancer doesn't have to mean the one with the most side effects for the patient. Unfortunately, most of the lung cancer therapies do seem to cause a lot of side effects. Every patient reacts differently and you won't know how your mom is affected until she tries it. Chemotherapy is not the enemy. It is strong medicine for a nasty disease. [I have to keep reminding myself of that from time to time!] Almost everyone has side effects and there are medicines and ways of doing things that can minimize the bad ones. If your mom has problems, call the oncology nurses on duty. The nurses are wonderful(And yes, you can claim to be wonderful too. I love all my nurses!). Radiation is used to shrink tumors, especially when they are causing pain or problems. Another treatment that is around, though not everywhere, is a kind of dye that is light sensitive. It can be used to destroy small tumors in the lung without chest surgery. Often it needs to be repeated, but I mention it as an option. Even though you are a nurse, remember you are a daughter too and cancer is a VERY emotional kind of diagnosis to get--emotional for the whole family. Bringing a tape recorder to initial appointments to hear what the doctors are saying would be a great idea. Start keeping a 3-ring binder too of all the reports and doctor's orders just like you were keeping patient records in the hospital. Ask if you have any questions about stuff on the path report or medical side effects. Cancer is a nasty disease but you do not have to go through it alone. Just ask when you have a question.

C. Abbott