Daughter recently disgnosed at age 35

Jakhn · July 2015

My daughter was recently diagnosed after a colonoscopy for what the doctors thought was an ulcer,she then had a ct scan,an appointment with a surgeon,more bad news the ct scan showed something suspicious in her liver,had a liver biopsy all within a week and a half.She had the biopsy on friday and now we are just waiting to hete something or to get an appointment with an oncologist or something .Is that how it usually goes? The tumirin the transverse colon is causing a partial obstruction so they put her on aliw residue diet which we had to kook up in the internet to see what it was each one we liiked at daid something different. How long does it usually take for biopsy results and some plan of action or to get an oncologist? Please help!

Jackie

Zing · July 2015

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

Easyflip · July 2015

I had

cancer in my colon, lymph and liver and I'm sitting here now 1 year cancer free! It can be beat, especially by a young strong person. Don't give up hope, attitude is huge. We'll have more detailed advice when we know what's up exactly. Good luck to you and your daughter.

easyflip/Richard

Trubrit · July 2015

Everyone is different

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

impactzone · July 2015

so sorry. I was dx with colon

so sorry. I was dx with colon cancer at 47 with liver and lung mets. I had surgery for the colon and then went on chemo for 3 months to see if the liver tumor shrunk. It did and then I had surgery for that. Over the last 9 years, I have had 4 lung resections, 10 months of chemo and many other tests and stuff. All this was done at Stanford. I would suggest trying to get to a large comprehensive cancer hospital. Make appts at 2 or 3 different ones. I had appts at Stanford, UCLA and UCSF and choose Stanford only because of traffic and parking ease. I am 4.5 hours away from it so it is not an easy trip. I did continue to teach while doing all this. It is a marathon and not a sprint so even if you try like I did, to become the internet colon cancer expert, you can not get everything done immediately. I looked at it like the game whack a mole while my onc used the analogy of weeding dandelions that spring up. Iwould suggest eating as well as possible, eliminate as much negativity in your life, get on an antidepressant ( I did for the first year) if you yo-yo too much emotionally, get appts scheduled even if you will later cancel them. I got onc appts and surgeon appts without each taking to the other at least a month in advance so that if one suggested the other, I was ready. All my best.

Chip

BillO60 · July 2015

There's definitely a learning curve

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 · July 2015

BillO60 said:
There's definitely a learning curve
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

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

Trubrit · July 2015

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 company woes

Insurance companies nearly always refuse to pay for PET Scans. The person in charge of finances at your Oncologist office, should be able to take the insurance companies on, and demand the PET Scan.

I have had two PETs and both times the insurance refused. I hope you get something sorted, as a PET Scan at this point would be good, as it is more sensitive than the CT Scan.

Good luck and keep us posted.

Sue - Trubrit

BillO60 · July 2015

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

PET Scan, India ink, and other stuff

Hi Jackie,

You will pick up on the terminology soon enough -

MRI (Magnetic Resonance Imaging), PET (Positron Emission Tomography), and CT (Computerized Tomography) are all different types of scans that give different views of what's going on inside. Because the equipment is expensive to buy and operate the tests are expensive and insurance companies tend to deny requests without sufficient written justification which should be provided by the oncologist and surgeon. In other words that's a battle they should be fighting on your daughter's behalf.

One use for the MRI is to give the surgeon's a map for surgery. PET scan can help to identify areas where cancer cells may exist that weren't clearly defined in a CT scan. All of these are diagnostic tools that may help provide information to the doctor. Sometimes the information is useful and sometimes it's not. For example, I've had a CT, MRI, and PET scan of my liver, all of which came back vague and inconclusive. They know I have a 1 cm lesion and some other smaller lesions and they suspect metastasis but until they do a biopsy they won't know for sure.

Since they have biopsied your daughter's colon and the liver the oncologist will be able to discuss those results and should be able to give you some idea about expected treatment.

But don't expect too many absolute answers at this point or a definite prognosis.

As far as the India Ink and tattooing, they likely did that during the colonoscopy. It means they marked the borders around the original tumor. It's possible that your daughter may have radiation or chemotherapy before they decide to do surgery. Because chemotherapy and/or radiation would hopefully shrink tumors the tattoos let the surgeon know what the original margins were where the tumor was located.

Best of Luck,

Bill

tanstaafl · July 2015

important first aid

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.

BillO60 · July 2015

tanstaafl said:
important first aid
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.

Thanks for the tips

Tanstaafl,

Post-radiation and chemo I've been doing a lot of reading on diet including juicing and what fruits and vegetables and herbs seem to work against cancer. I've been taking fish oil, vitamin C, vitamin D3, (In much lower doses), as well as a calcium supplement, and a multivitamin. This has mostly been to heal from the radiation and start rebuilding my immune system. I haven't had much of a chance to look at other supplements and wasn't even sure where to begin.

If you don't mind me asking, how did you arrive at these particular supplements and dosages and what were the additional supplements that you added? I'm only about 2 weeks away from surgery.

Thanks and congratulations to you and your wife.

Bill

danker · July 2015

drs

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!!!

tanstaafl · July 2015

BillO60 said:
Thanks for the tips
Tanstaafl,

Post-radiation and chemo I've been doing a lot of reading on diet including juicing and what fruits and vegetables and herbs seem to work against cancer. I've been taking fish oil, vitamin C, vitamin D3, (In much lower doses), as well as a calcium supplement, and a multivitamin. This has mostly been to heal from the radiation and start rebuilding my immune system. I haven't had much of a chance to look at other supplements and wasn't even sure where to begin.

If you don't mind me asking, how did you arrive at these particular supplements and dosages and what were the additional supplements that you added? I'm only about 2 weeks away from surgery.

Thanks and congratulations to you and your wife.

Bill

-

I drew on several distinct areas of literature. First and fastest, Life Extension's articles. Second, supernutritional and orthomolecular sources, as much as possible the original papers, experiments and observers. Asian literature, especially chemo and PSK. Some magnesium, quercetin, EGCG, silimarin were also notable. I actually regret not loading more vitamin D3 faster preop, Deficient. Calcium has to be measured and controlled, balanced by magnesium and MK-4, human vit K2.

Helen321 · August 2015

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

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.

DaveHereInFlorida · August 2015

Im so very sorry to hear

Im so very sorry to hear about your daughter. Im on Folfox 5 chemo regimen for the colon cancer which spread to my liver . Ive had 5 treatments every other Wednesday and it takes about 3 hours each time for them to put the 3 bags of 'magic' into me...then they send me home witha pump which pumps a different chemo drug into me every 15 seconds. Thats lasts for 46 hours. , then i return the pump on the friday. Before i started chemo, my CEA marker level was at 622 and today it is at 122 so the regimen is hitting the cancer hard. Ask her Doctor about Folfox 5 regimen as it seems to be the most popular with best effects. Ill be lifting up her and your family in prayers. Remember, its not 'US' that beats this disease , for, that is misplaced pride. Rather, it is Gods will by either performing a direct miracle of healing or by using chemo drugs in our bodies that he fashioned . All we are are the Recipients . Our faith , trust, and hope needs to be squarely centered on the will of God knowing he loves us immensely regardless of which way it goes. First , it takes being in right standing with God , then we enter his family finding favor . It starts with this : google Romans 10:8-11 then cultivating a personal dynamic relationship with him thru Christ. (P.S. This hasnt been a church sermon but rather what it first takes to get right with our Creator so we can favorably petition his grace and mercy for a complete healing, and its something people have found to work and be true thruout all of history) . Regards .

Daughter recently disgnosed at age 35

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