My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Monday, September 6, 2010

What questions to ask when you are newly diagnosed?

I am writing this in response to a comment to my last post. I think all of us new to a cancer diagnosis struggle with what questions we need to ask the physicians we see. I did a lot of research prior to my first appointment with a specialist as I wanted to be able to ask intelligent questions.

I have some questions to ask listed on my FAQ page, they are as follows:

How many cases of appendix cancer (or peritoneal cancer) have you treated? (I personally wanted a specialist who had treated at least 50-100 cases of my rare cancer)

What treatments do you use?

What are your survival rates?

What are your complications rates?

How aggressive is my particular tumor?

What treatments do you think I will need?

How long do you expect my recovery from treatment to take?

What is the recurrence rate after treatment?

Another good list of questions is posted on this Making Sure Your Surgery is Safe site, published by the US Department of Health and Human Services.

My local very good surgeon, on discovering my cancer, also said that I needed a hemicolectomy ASAP. I personally chose not to have any further surgical procedures done at the time (my appendix had been removed laparoscopically), as I had thought I might need more than just a hemicolectomy, and wanted to have any surgery I needed done all at once. Because my appendix had ruptured, I knew I had seeded my abdomen with cancer cells, and based on my research, I felt I also needed peritoneal chemotherapy. Peritoneal chemotherapy is less effective when you have had previous abdominal surgeries (due to scar tissue and adhesions that form preventing distribution of the peritoneal chemotherapy...scar tissue and adhesions develop in about 5 days after major abdominal surgery).

In the end, I waited 6 weeks to have surgery done by a specialist who had treated many cases of appendix cancer (my surgery was more involved than just a hemicolectomy, I had the hemicolectomy done as part of my cytoreduction surgery). I had peritoneal chemotherapy initiated almost immediately after surgery (before scar tissue and adhesions had formed), and had not other abdominal surgeries aside from the laparoscopic appendectomy prior to my cytoreduction surgery. All of those things I think went in my favor, I have been cancer-free for 9 years.

While we all want the cancer removed from us as soon as we are diagnosed, sometimes it is worth the wait to seek out the correct treatment, to see a specialist. I have many of the specialists listed on my "Physicians and Facilities" page.

Hope that helps!

9 comments:

Jeff Kemper said...

Carolyn-

Thank you so much for dedication to this cancer. Much like your story, that I have found online, my mother was just recently diagnosed with cancer of the Appendix. However, we are looking into a second opinion at this time. I have yet to find out if they diagnosed it officially as Signet Cell or not. Based on the prognosis and everything I have looked into, all signs are pointing that direction. She had a full historectomy two weeks in whcih we were hoping to find a simple benign uteran tumor. Unfortunately, we found the cancer in which the doctor who performed the operation seemed a bit puzzled by. So now we are here two weeks later. We had our first appointment with a local oncologist in Fresno, CA. He says that the cancer is less than %5 curable and has put a 50% chance on my mom's life to live for 3 years with or without treatment... I was there with my mom, dad and brother when he gave the prognosis, but he did it so loosely and quickly. he was even puzzled and hadn't even seemed to be so positive that it was cancer of the Appendix. I left the office more confused then scared and hurt. He told us that he wanted to begin an agressive form of Chemo in 2 weeks from the appointment, which starts next Wednesday (One week from today). He wants to start a 12 treatment cycle for a 6 month period. 5 FU is part of the Chemo therapy and Ovastin? Do you know anything about this treatment? Any thoughts on this?

We are sending all results to UCSF today and hope to get a second opion from them in the next 48 hours. I am completely uneducated in this and will be seeking answers from wherever I can, so any thoughts on this will be great.

She is 61 now and in very good health for her age, she has never smoked in her life and never been a drinker either. Her diet can use some improvement though. However, I would not call her overweight. Just like yourself, this is unreal news to the entire family, however instead of grieving I am trying to figure out how we are going to beat this thing! It is not her time!

As you know This has been an impossible two weeks to handle for me. So it is refreshing to find somebody who has dedicated so much into this cancer.

I am 23 years old living in Santa Barbara, CA. I was at home with my mom for those 2 weeks (The most difficult/ best 2 weeks of my entire life)! but have since returned for work. It is only a 3-4 hour drive, but I am not sure what to expect from the Chemo, unsure how she will react. I am going to make myself as readily available as I can from my location. I have a brother and father living with her. She has tons of support and love around her from friends and family! Your story brings us hope and hopefully some answers!

Do you have any suggestions onwhat we can/should do from here?

Thank you,

Jeff K

Carolyn Langlie-Lesnik RN BSN said...

Hi Jeff,

I answered your questions as best I could via email. Please let me know if I can be of any other help or support!

Carolyn

Anonymous said...

My oncology surgeon tole me that IV chemotherapy isn't great at getting rid of interperitoneal cancer. I had one lymph node positive when I had the hemi-colectomy. Then I had chemo. The oxalyplatin was quite sickening and having it in the winter in Maine was difficult- significant problems with cold- touching and breathing. It was even painful to touch silverware so I used plastic utensils. The Avastin was no big deal and I don't think the Xeloda pills were too bad. When I had the heated IP chemo I also had the rest of the hysterectomy (the cancer had initially been found in my ovaries), the omentum and my gall bladder were removed at the same time. Having worked in the medical field for 30+ years I know there are occasionally unexpected complications and no guarantees. I never asked the surgeon- who has had lots of experience with appendiceal ca, what my survival stats are. She did give some numbers when we first met almost 2 years ago but when I had melanoma 22 years ago I got a little obsessive over survival rates. I am very grateful that my oncology surgeon was well trained in treating this cancer and is only 15 miles away and is caring and a good communicator . She has been my cheerleader and keeps saying "I think you will do very well."

Lauren Emery

d said...

Thank you so much for posting this. Lets create a future without cancer. Come join us on October 3rd. 60 communities will participate… check out to see how we can all help.




MTHIRTY is proud to share this message on behalf of CIBC

Jeff Kemper said...

Anonymous-

It seems that my moms chemo is the exact same treatment you received. How are you fairing now after the chemo?

Is there any suggestions as far as food goes? What goes down easily? How many treatments of Chemo did you go through?

I am glad to hear that things are going well now, I appreciate you posting you story, again all of this brings hope to others!

Jeff

Anonymous said...

Jeff-
If you are referring to my comment, my chemo was done every 2 weeks for about 3 months. It was supposed to be every 3 but they had to cut the dose of oxaliplatin back so I had to go more often as it made me barf a lot and I had to go to the out patient treatment center IV fluids for 3 days. The subsequent rounds the doc gave me more antinausea drugs- including Emend pills form for 2 days after chemo. I had a hard time eating and drinking. I drank lots of ginger ale. Ate yogurt, greasy food like McDonalds, pizzas, fried eggs. Totally unnutritious. Some cancer patients crave sweet and greasy foods and don't like their favorite foods. I lost a lot of weight and gained it right back. Hehehehe. I think what really helped me was the heated intraperitoneal chemo that was done form 90 minutes in my last surgery. It is done on a heart lung type machine. Mitomycin C is stronger than the regular chemo agents done via IV. I hope your mum can get this treatment.

BTW, my veins were never big to begin with and one of the best things has been having a mediport surgically implanted near my clavicle to use for blood draws, IV chemo and CT scan contrast. Chemo trashes your veins. I have the mediport flushed every 6 weeks to keep it from clotting.

I get CT scans every 3 months and feel I have definitely bought time.

Lauren

Forty Pound Sack said...

Thank you for your blog. I was recently diagnosed with breast cancer, and I'm finding blogs more helpful than all the strictly medical information I've found online. I look forward to going back to the beginning of your journey and reading every word. Thank you, thank you, thank you.

amir said...

thanx for your interesting posts,let me introduce myself am 45 years old man from morocco been for so long a heavy smoker,and once "about 1 year ago " while shaving i remarked a slight swelling in my neck,that keep on growing i thought it is just a thyroid so i went to the doctor then made some Laboratory and X-ray Tests that confirmed it's not a sipmle thyroid nodule.So i got those negative thinkings that it could be something more dangerous,am even hesitating to continue my medical tests for fearing this shocking eventuality.Since then i read everything about cancer maily symptoms and my fear becomes greatter each time i read about some sypmtoms which apply to my case... i need some support please help!!I made a blog about cancer too for this cause it's : http://medikkum.blogspot.com

Anonymous said...

I'm 54years old, I went in to have a Historectomy,When I woke I was told my appendix had to be removed they had a fast growing cancer.The Doc said wasnt hooked to the walls of my appendix but found spot on liver and on kiddeys. They found my cancer in 2011, Since my Doc orders a CT test with the die every 3 months.Now I'm being told this CT test can make cancer grow. Should I stop the CT.What other test can be done. To Ck on the spots they have found.Cancers just not fair.My Mother died of this cancer at 47 years old. I'm very sorry to all that has been part of cancer.My prayers to all..