Daughter recently disgnosed at age 35

Hi jackie,

I'm sorry to hear of what you and your family are dealing with.  The worst part of all that you are going through right now is the not knowing what is going on.  The fact that your daughter had all the appointments and such within a week and a half is not unusual, at least not in my eperience. 

I would think that given that she had the biopsy last Friday, you should be hearing something relatively soon.  If she requires an oncologist, she will likely be referred quickly.

The low residue diet is a way of reducing the strain on her colon so that she has smaller bowel movements. Although she hasn't been diagnosed with IBD, this article may help you with her diet.  http://www.webmd.com/ibd-crohns-disease/low-residue-diet-foods

Keep us posted.

Janet

I got my pathology report two days after my bowel resection. Others have had to wait longer. It all depends on where her sample has been sent. 

Waiting really is the pitts. 

I hope she is good and follows the low residue diet. It will help keep the stools soft and moving. 

once you get those results, things will swing into motion really quickly (or should). You can do some local research on an Oncologist or even a Cancer Center if there is one available close by. It is good to know what and who is out there and not just rely on your PCP to set you up with one (which is actually what happened in my case, and I have been VERY happy with my Onc). 

Your daughter is very young, by CRC standards. With luck, this will be caught early, and she may need only surgery. 

Try to keep your head held high. It can all seem so overwhelming at the beginning. Being positive is a huge benefit to everyone. 

Welcome to the forum. We are here for you and thus, your daughter. 

Sue - Trubrit

Hi Jackie,

I was diagnosed with colorectal cancer in March of this year after a colonoscopy in late February. Had CT scan that showed something in the liver and had follow-up MRI and a PET scan. All of the initial tests started about a week after the colonoscopy and biopsy. In my case, it took about 4 days for the biopsy results to come back. As mentioned by others that depends on where the analysis is being done. My liver scans were inconclusive and they decided to wait to biopsy the liver during surgery to remove the tumor in the colon. 

I wasn't sure from your post if the tumor in your daughter's colon was determined to be cancer. If so, was that determined by a biopsy?  Also, if your daughter needs information about a low residue diet her physician should be able to refer her to a Registered Dietitition if she has any questions.

One phrase that you'll hear repeatedly (and probably get tired of) in response to questions is that "every patient is different". Unfortunately there really is no one size fits all treatment although there are some standard protocols that are in use based on the size and location of the cancer. Your daughters surgeon and oncologist should be able to give her an overall timeline once they have a clear picture of exactly what is going on.

For example, in my case the general timeline that was laid out by the surgeon was:

• 28 days of radiation thereapy spread out over a 6 week period and taking Capcetine (an oral chemo) twice a day during that same period. (Purpose: Attempt to shrink the tumor to make it easier to remove).
• A 12 week recovery period. 
• Next will be surgery to remove the colorectal tumor.
• A 1 month recovery period from the surgery.
• Chemo for 3 - 6 months (Purpose: To kill off any cancer cells too small to see at the primary site and throughout the body.)

Overall, my treatment is expected to take about a year. That will change based on the final findings in my liver after a biopsy (assumed to be metastases), the biopsy of the primary tumor site, and my body's and cancer cells reaction to whatever additional chemotherapy they prescribe after surgery.

Your daughter's treatment will likely be different based on many factors and each of the doctors should be able to provide a piece of that puzzle.

She may see (not in any particular order) a surgeon (preferrably one that specializes in gastrointestinal oncological procedures), a radiation oncologist if they determine that radiation treatments will be beneficial, and an oncologist who will determine what chemotherapy will be prescribed.

I don't know if you'll be seeing the doctor with your daughter or if someone else will be with her but whoever is there should go prepared.  Your daughter and you should write down any questions you have no matter how basic you think they might be.  Also, if you don't feel like your doctor is giving you enough information find out if you can schedule a meeting with an oncology nurse.  Don't expect "final" answers since there are too many unknowns with this disease. But you'll at least get some of the gaps filled in.

While you want this to be fixed as quickly as possible, please realize that ridding the body of cancer takes time, not just to kill the cancer but for the body to heal from the different treatments. The healing process can sometimes take as long as the treatment does so she and you need to be patient.

Come back and ask questions.  It's rarely possible to give an absolute answer but it is possible to describe what we know or have gone through and from that you and your daughter may gain from everyone's experience. Eventually someone out there may be able to learn from your daughters as well.

I wish your daughter and you all the best.

Bill

Jakhn said:

Update on my daughter

First i would like to thank all of you from the bottom of my heart for replying to my post ,and for giving us hope and some needed information when we were so panicked and confused.Yes i will be going with my daughter on all her appointments,and the notebook with questions is a really good idea.The first two appointments with the gi doctor and the surgeon i remember keys words and that was it we didnt even think to ask what a low residue diet was.As it stands now the surgeon ordered a Pet Scan/MRI???but the insurance company denied it we have an appointment with an oncologist on Wednesday without it.Thats all we know so far. Thank you again for your support.

 And yes they did biopsy the tumor in the colon and said it eas a very agressive cancer they also tattooed it with indian ink ?

 Jackie

Here're  the important things we did for what turned out to be stage IV cancer with my wife:

1,  She  quickly started on 1600 mg of cimetidine, 17,000 Iu vitamin D3 (low!), 5-12 grams of oral vitamin C per day, 3000-5000 mg EPA/DHA 3x conc'd fish oil, 500 mg coQ10, 45 mg menaquinone-4, 900 mg alpha lipoic acid, 400 mg MSC selenium. and modified citrus pectin.  Later we raised them and added more. 

2.  We get extra biomarkers before surgery.  Some of the ones we've gotten to cover the bases, include CEA, CA199, CA72-4, AFP, CA125, LDH, ESR

3.  We read a numberof the Life Extension articles on colon cancer and cancer surgery.

A lot of her cancer died in the 4 weeks before her operation, turned to a still recognizably formed mush,scooped out by the surgeon.  Her cancer is deadly, with elevated CEA and CA19-9, but the immune response wiped a lot of the original cancer out and prevented further metastasis by a cluster of deadly para aortic lymph nodes.  Eventually chemo and supplements dissolved cystic mets in her liver too.    We're 3+ years past a Big 3 oncologist's original expiration label. She's looking good but still on daily maintenance style chemo and high powered supplements.  

Read and you can improve the odds and the results.

My internist ordered a colonoscopy.My tumor was discovered that Friday.The hospital made an appointment for the following Monday with my surgeon. She arrainged for an oncologist and radiologist.  The port was ordered and I was on my way for quite a ride.  I hope you have equally fast action.  It was my surgeon running the show, and fortunately she was the most caring M.D. I have ever met.  Good luck to you! Hope  you become NED(no evedence of disease) as I did!!!

Jakhn said:

Update on my daughter

First i would like to thank all of you from the bottom of my heart for replying to my post ,and for giving us hope and some needed information when we were so panicked and confused.Yes i will be going with my daughter on all her appointments,and the notebook with questions is a really good idea.The first two appointments with the gi doctor and the surgeon i remember keys words and that was it we didnt even think to ask what a low residue diet was.As it stands now the surgeon ordered a Pet Scan/MRI???but the insurance company denied it we have an appointment with an oncologist on Wednesday without it.Thats all we know so far. Thank you again for your support.

 And yes they did biopsy the tumor in the colon and said it eas a very agressive cancer they also tattooed it with indian ink ?

 Jackie

Insurance companies always deny scans.  You just call the nurse at the doctor's office and she'll have the necessary paperwork sent through billing.  I'm really sorry this is all happening at 35.  The ink is so they can easily spot it during surgery.  Mine was also acting aggressively (even though it wasn't an actual aggressive cancer) and it's gone now after two surgeries, chemo and radiation (I was stage III). It took me a few months to get in with Sloan which my oncologist said was fine.  My sister took notes and then she put them in WORD as full paragraphs so she could search them anytime she needed info. and also so that she would remember what her notes meant.  She sat in on every appt. even if she was on the telephone.  It's important to keep track and also write down the questions for your next appt.