Please help, input needed

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Ulendon
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Please help, input needed

Postby Ulendon » Thu Nov 28, 2019 12:54 pm

I'm a 43 year old female and yesterday I had a colonoscopy. I had been seeing blood in my stool for about a month and my gp and I both thought it was most likely internal hemorrhoids. I'm about 80 pounds overweight.

I'm mostly on my own, single and introverted. Mostly spend my free time with my dogs and doing dog sports.

Yesterday I had a colonoscopy. I was pretty drugged but after the doctor came in and said it was bad news. She said that they removed 11 polyps and that there was a mass that was probably cancer. She took a biopsy and said it would be 10 days for the results. She said that they were referring me to surgery and that I needed an MRI and pelvic CT. The earliest appointment she was able to schedule for me is in a week.

I didn't really have any questions at the time as I was still quite groggy. A friend gave me a ride home and I fell asleep on the couch. This morning I woke up, started googling and am currently really scared. It looks like if it has metastasized then I'll only live about a year but if it hasn't it can likely be cured?!?! Today is Thanksgiving here and I can't call the doctor for information.

I missed a call from the surgical center yesterday when I was sleeping and am calling them tomorrow morning first thing. I'm hoping they can help me get the MRI and CT as soon as possible. I don't think I can handle a week of waiting.

Can I get some input on what I should ask about? Any resources to try and figure out what to expect? I'm currently sitting alone crying to myself and my dogs are worried lol!

AlexandraZ
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Re: Please help, input needed

Postby AlexandraZ » Thu Nov 28, 2019 2:14 pm

Sorry that you're going through this! It may not be as bad as you are fearing, though. I know it's hard, but try not to worry too much until you have the results back! If you browse the threads on this forum, you'll find that even if it HAS metastasized, there are so many treatment options, and a lot of people are even being cured these days.

My boyfriend was diagnosed stage 4B at 28 years old, with tumors metastasized to most of his liver and both lungs. That was 9 months ago and his tumors have shrunk over 50% and we are going for getting him operable.

There are a LOT of people on here who had tumors in their liver who were cured and have been living without cancer for many years now. Anyway, I'm just trying to say: Don't google too much. I know the waiting time is the worst, but try to distract yourself and try not to worry. There's no reason to believe it wasn't caught early.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

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Jacques
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Re: Please help, input needed

Postby Jacques » Thu Nov 28, 2019 2:37 pm

Image

Ulendon wrote: ... Can I get some input on what I should ask about? Any resources to try and figure out what to expect?...

Here is a link to a post with a list of questions from the Mayo Clinic.
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60747&p=481109#p481109

And for resources, you can start with the NCCN guidelines for Colon Cancer (or the NCCN guidelines for Rectal Cancer, if the tumor is in your rectum).

NCCN Guidelines - Rectal Cancer vs. Colon Cancer

Ulendon
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Re: Please help, input needed

Postby Ulendon » Thu Nov 28, 2019 3:02 pm

Thank both of you so much!

zephyr
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Re: Please help, input needed

Postby zephyr » Thu Nov 28, 2019 3:44 pm

I'm so sorry. You are overwhelmed with fear and we all get it.

Ok, first: breathe. When you start to panic, do a 4-7-8 breath. Seriously, it will help. Exhale completely then softly close your lips and inhale through your nose to a count of 4. Hold it for a count of 7. Now exhale through your mouth to a count of 8. Exhaling for twice the inhale time is really important so don't cheat. That's the part that calms you. Do it at least 3 times. It's a natural tranquilizer.

Second: stay away from Dr. Google. You'll find as much bad information as good information and, truly, you don't have enough data at this point to get any relevant information even on the reputable websites. You'll only make yourself crazy. Don't get ahead of the data.

Third: Your mind has gone to worst case, and that's natural. We've all done it. Even if it's metastasized, it's not an automatic death sentence. I won't lie to you, it might be a life sentence but your life might last a whole lot longer than you think. Those statistics? Ignore them. All those statistics tell you is that X number of people died within X (usually 5) years from diagnosis. It doesn't tell you anything how they died (car accident, etc.), only that they died. They didn't necessary die of cancer or anything to do with cancer. I'm a Stage IV patient with colorectal cancer that metastasized to my lungs. I was diagnosed 3-1/2 years ago. There are other people here, also Stage IV, who survived at least 10 years and are still around -- some have even been cured. The state of cancer treatment is evolving very quickly. The next big thing might be right around the corner.

Instead of Googling all the horrible things that could happen, start looking into your nearest cancer treatment center or hospital and find out what complementary services are available. Where I get treatment, they offer all kinds of classes - several forms of yoga, tai chi, meditation, arts, music therapy, etc. - free to cancer patients. They have a gym with personal trainers, also free, plus social workers and dietitians. Make friends with the social worker. He/she will be able to help find you services when you need them - maybe a ride to/from treatment, or someone to walk your dogs, or a service that will check on you, etc. The mind-body-spirit connection is real and it's powerful. Whether you are Stage I or Stage IV, give your body a good fighting chance. Also, you mentioned that you're introverted, but start reaching out to friends, neighbors, and family. You might have to step outside of your comfort zone but try. Please. You might be surprised at the people who jump to help, as well as the people who can't deal with it. As to the latter, don't take it personally. Some people just don't know how to cope with so much as the mention of cancer.

Be sure to come back after you know more and let us know what's going on. This is a terrific community and we're here for you. Let us be your friend.

I hope this helps.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

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Jacques
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Best Cancer Hospitals

Postby Jacques » Thu Nov 28, 2019 6:29 pm

zephyr wrote: ... Instead of Googling all the horrible things that could happen, start looking into your nearest cancer treatment center or hospital and find out what complementary services are available....

One thing you could do in your spare time right now is to see if there is a major cancer center somewhere near you.

Here is some information on the location of some of the best cancer centers in the country

  1. How to Find an NCI Designated Comprehensive Cancer Center
    https://www.cancer.gov/research/nci-role/cancer-centers/find
    .
  2. How to Find an NCCN Member Cancer Center
    Here is a map of the NCCN member cancer centers. There might be one not too far from you.
    .
    .
    Image
  3. How to Find the Best-Rated Cancer Hospitals in the U.S. (U.S. News &World Report)
    http://health.usnews.com/best-hospitals/rankings/cancer

Ulendon
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Re: Please help, input needed

Postby Ulendon » Thu Nov 28, 2019 8:25 pm

Thank you so much for the information and the talking off a ledge. I'm in the north San Francisco Bay area so it looks like there a a couple of places. Though my insurance is through Kaiser so I think I need to use them.

Punky44
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Re: Please help, input needed

Postby Punky44 » Fri Nov 29, 2019 12:11 am

I’m so sorry that you are going through this right now and it is very scary with all the unknowns—the best thing you can do now is find a major cancer center near you, find a board certified colorectal surgeon, and familiarize yourself with the TNM staging system they use to stage colorectal cancer. Searching this forum is also a good resource vs Google.

We are here for you.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

kandj
Posts: 264
Joined: Sun Sep 27, 2015 11:29 am

Re: Please help, input needed

Postby kandj » Fri Nov 29, 2019 1:12 am

I am so sorry you are going through this. I would like to echo previous posters though, the google numbers do not reflect what we see in actual practice. My DH was diagnosed at 36 with stage 4 cancer that had spread to his liver. He has had a few recurrences, and further spread to his lungs and adrenal gland. But, he is more than 4 years out from his initial diagnosis. I think the key to long term survival is to be seen at a major cancer hospital, proactive treatment immediately, and active participation in your own care. You will get through this, and we are here for yo as you do.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19
New spot seen in lungs and adrenal gland 11/2019

natelaugh
Posts: 94
Joined: Wed Apr 03, 2019 11:40 pm

Re: Please help, input needed

Postby natelaugh » Fri Nov 29, 2019 1:17 am

Push for a gnomic test. Find out ASAP if you have braf v600e because traditional chemo will not help much. While you wait you can get a cea and cea199 from private lab, cost around $100 for both. This will be the baseline.

Nate
Caregiver to 80M
DX:CC,RC,desc
11/2018 rightPain
1/19/19 scopy,path
1/23 CTscan
2/19 surgery
2/26-2/28 NGTube
2/28-3/14 TPN bc ileus
3/2 2nd surgeryCloseOpenWound
3/4-3/28 woundVac
size: 6cm Adenocarcinoma
grade Poorly
Stage IIIC T3N2aMx
PositiveLymph:5of28
BaselineCEA:68
LVI:Y
PNI:N
Surgical margins:clear
MSI:MMR (MLH1, MSH2, MSH6, PMS2) Intact nuclear expression
Lynch status:N
Laparascopic, partial colectomy
CEA:3/28/19 2.8
Chemo:4/16/19-9/17/19 5FU,12cycles,every 14days,leucoverin,zofran,Dexamethasone

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Jacques
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Re: Please help, input needed

Postby Jacques » Fri Nov 29, 2019 1:34 am

Ulendon wrote:Thank you so much for the information and the talking off a ledge. I'm in the north San Francisco Bay area so it looks like there a a couple of places. Though my insurance is through Kaiser so I think I need to use them.

I think you can probably use Kaiser but then get a Second Opinion at a comprehensive cancer center south of you and eventually have your treatments done at your local Kaiser hospital but under the written orders of a Board-Certified colorectal cancer doctor from the major cancer center. That's what some people in your area have done in the past.

The big hassle right now is getting to the City and finding a parking place close to the cancer center. Nowadays with all of the Uber drivers cruising up and down the streets looking for fares, the traffic in the City has become a veritable nightmare. But you can manage all of this if you give yourself enough time.

Once you have posted a few more messages here you will be promoted to Registered User status with greater privileges and the ability to send private messages (PMs) to other members here. Then you could send a PM to the new Colon Club president if you feel like it.

Why would I ever suggest that? Well, it's because nine years ago she used to live up near you and go to the City for treatments and scans, and she might even have some tips now on how you can manage your own journey.

And don't fret so much about having to wait a week or more for biopsy results. She's been there too. You can read all about it in her May 15, 2012 post on her personal blog website.

And she's had cancer since 2006, and that's a lot longer time than the one year survival that you were speculating about in your first post.

So, if you have some spare time this week you could spend some of it going over some of the old posts in her blog.

Also, if you are interested you can download and listen to the 28-minute podcast where she was interviewed on Lee Silverstein's "We Have Cancer" series:

https://podcasts.apple.com/us/podcast/colon-club-providing-support-healing-to-those-touched/id970806995?i=1000428685690

zx10guy
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Re: Please help, input needed

Postby zx10guy » Fri Nov 29, 2019 9:03 am

As others have stated, don't get ahead of things by imagining the worst case scenario. Until you get the scans, no one can say what is going on. To get a scan done sooner, you can contact your doctor and get a STAT order. If that is done, you get pushed to the head of the line. I'm sure your doctor would know of scan facilities which will honor the STAT order and get you in. When I started this ordeal back in Dec. of 2012, the mass was discovered via colonoscopy. My GI doctor issued a STAT order for a CT scan and I was at my local hospital's scan facility the next day having the scan done. I was at my CRC surgeon's office the day after for a surgical consult. So it depends on your doctor. My doctor moved fast and didn't mess around. Nor did my CRC surgeon. He also had me set up with a liver specialist because there were two lesions detected in the CT scan which the appointment was a week later from my colonoscopy. My CRC surgeon also put in a STAT order for a PET scan to have a closer look at the two lesions. My insurance pushed back a bit because of the cost of the PET scan especially with a STAT order. His staff were wonderful in talking to the insurance company and convincing them this was absolutely needed. All of this was done while I was still at my appointment on Friday; 2 days after my colonoscopy. My PET was done on Monday....Christmas Eve. I was in surgery Thursday. So in a matter of a week from my colonoscopy, I had a CT and PET scan, a consult with a CRC surgeon, a consult with a liver specialist, and ultimately surgery. All of this with Christmas in the middle of that week along with the weekend.

Many times your scans are pushed out days not because it was the first available due to all the time slots being booked. It's because the scan facility needs to get insurance authorization. They pad the time needed to ensure the authorization comes in before you go in for your scan. Otherwise, the scan facility will make you pay up front for the scan. I had this happen one time where I had to pay up front for a CT scan which amounted to over $900. I don't remember why that happened. Depending on your insurance, they usually turn over their approval pretty quickly. With my insurance through United Healthcare, I typically get an approval the next day. I know to call back the the next day to talk to the scan facility to see if the insurance approval has been received. And then I schedule for a sooner date and time. This has always been the case and this is with a routine scan order. As I said above, if your doc issues a STAT order for your scan, you will get in sooner.

Ulendon
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Re: Please help, input needed

Postby Ulendon » Fri Nov 29, 2019 7:22 pm

I got up early this morning and called to get my appointments figured out. It was really hard getting actual people on the phone because of the holiday!

I have a Monday appointment for the pelvic MRI in Oakland but couldn't get the CT scan any sooner than Tuesday afternoon. For some reason the doctor had put the order in at two different locations. So my CT is in San Rafael, near home. I asked Oakland radiology if they could do it at the same time and they recommended not trying to switch the appointment I already had because of the holiday and weekend. I guess Tuesday is better than the initial Thursday appointment I was given.

Oakland is where the surgery center is and I have a Friday appointment with the colo-rectal surgeon Dr. Amy Tolan.

Still pretty epically freaked out but you guys have made it much better. It doesn't help that I've got some low abdominal soreness going on to keep me reminded.

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Jacques
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Re: Please help, input needed

Postby Jacques » Sat Nov 30, 2019 1:27 am

Ulendon wrote:...I have a Monday appointment for the pelvic MRI...

It's good that they are doing a pelvic MRI. That's what is needed for determining the exact location of the tumor and for determining exactly how far the tumor has grown into the colon/rectum wall. It can also show if any nearby lymph nodes are enlarged.

Be sure to plan things so that you arrive at the hospital in plenty of time. Also, be sure to follow any instructions you were given for MRI prep -- for example, no metal buttons or buckles on your clothing. MRI scans take a lot longer time than CT scans and you are supposed to remain motionless in the tunnel for each scan cycle, otherwise the image can become blurry and unclear. You want to have the best possible scan image so that they can see what is going on.

You can read some articles on MRI scans to become more familiar with the procedure.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59783&p=476177#p476177

Please note that on this message board the Search function ignores all 2-letter and 3-letter keywords, so this makes it difficult to search for things like "MRI" and "CT" here. Of course you can always do a search for "MRI scan" here but the search will ignore the MRI keyword and then give you all 41,000 posts that contain the word SCAN.

zx10guy
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Re: Please help, input needed

Postby zx10guy » Sat Nov 30, 2019 1:51 am

I have to interject something about scans. CT scans are also able to pick up lesions and tumor locations along with any affected lymph nodes. Having an MRI just produces a different picture and image of any suspicious location. The common scan method used for surveillance is a CT scan. Usually an MRI is ordered as a follow on after a CT is done to verify potential issues or if there are other indicators.

But nothing is definitive with lymph node or tumor penetration into the colon wall until you have surgery and pathology examines the removed tissue.

Also, start getting into the habit of getting a copy of your scan images and scan reports. You can request a copy of the images be burned onto a CD before you leave the scan facility. Having copies of the CD will be extremely valuable if you need to obtain a second opinion. Having the scan reports will allow you to refer back and see for yourself what the radiologist found in your scans.


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