New diagnosis and scared

Please feel free to read, share your thoughts, your stories and connect with others!
Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

New diagnosis and scared

Postby Spazzyjanet » Mon Oct 01, 2018 4:12 pm

Hello, I am also new to the cancer club and pretty scared right now.

I am post-surgery after a CT scan showed a 2cm tumor in my sigmoid colon. Margins were clear. I now have an Ostomy, which could be resected after treatment. The surgeon never explained the biopsy report so I was left to Google for a while and finally saw an Oncologist last week.

I am staged IIIC at the moment. CT scans showed a spot on the liver. The surgeon told me that they believed that to be a hemangioma. I'm going in for a PET scan on Friday. If I stay stage 3 (instead of 4), I will start 6 months of FOLFOX soon.

My biopsy report showed 11 positive nodes out of 18. Based on an anecdotal scan this appears to be VERY HIGH and I am now even more scared than ever, since i read that the number of positive nodes increase the risk of recurrence.

I am only 40, have 3 kids and really want to believe that I've got at least a fighting shot. The unprepared and somewhat nonchalant Oncologist I was referred to lazily threw out a 60% 5-year survival rate, presumably upping the 53% on the American Cancer Society's site due to my age.

Please help me. Do I have a fighting chance here? Is recurrence almost guaranteed? Should I prepare myself for a strong likelihood that this won't end well? I've read that if it does recur it will probably be metastatic and that is very bad. I am frustrated by what I am not being told.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: New diagnosis and scared

Postby rp1954 » Mon Oct 01, 2018 5:28 pm

The more specifics you can measure or document here, (extra) blood tests, pathology, and scans, the more chances you might find more answers. Many people use their signature to summarize these.

It is important to not let any potential mets or micromets grow unchecked, some kind of chemo ASAP is important. Self-advocacy, reading/expertise, and a careful, action orientation are important factors.

Even stage 4b patients have been extended 10+ years with good matches between their cancer and their treatments. We monitored and matched treatments better with additional blood tests, and used less common options in chemo, similar to ADAPT therapy (daily oral chemo + Celebrex) plus other anticancer, high potency supplements and mild drugs (CA199 targeted Tagamet/cimetidine if applicable, aspirin). The ADAPT patients had a trial where they got over an 8 year median, including mostly stage 4s.

My belief is that if you want to stay above average performance for whatever you've been dealt, you have to combine expertises beyond "standard care". I read these articles early on: Life Extension Foundation's intro to CRC, cancer surgery, Beyond colonscopy, Preventing surgery induced metastasis. Adding some mild drugs and targeted, extra potent supplements totally changed our situation, inexpensively.
Last edited by rp1954 on Mon Oct 01, 2018 9:08 pm, edited 3 times in total.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Soccermom2boys
Posts: 196
Joined: Tue Nov 10, 2015 10:29 pm

Re: New diagnosis and scared

Postby Soccermom2boys » Mon Oct 01, 2018 6:59 pm

Hi Spazzyjanet, welcome to our kindred spirits club, not exactly the club anyone would aspire to have to be a part of.

Please heed the advice of rp1954, always sound, excellent advice on how to get the most out of your “chemo experience”. In that regard, I cannot offer anything more helpful with regards to specifics on regimens. I did want to reply to your despair about it not ending well. Please know that while a stage is helpful to guide us with a recommendation of treatment protocols, truly, we all have different reactions to the treatments as our tumors are not identical nor the physiology of our bodies. There are many many stage IIIs and IVs who have beat this cancer and/or are living long-term with it as more of a chronic illness. What I would suggest from what I have read of your note is that you need a more involved and caring team—both oncologist and the surgeon. To have no explanation of the biopsy report sounds inexcusable to me, this is YOUR life on the line. And that your oncologist seemed unprepared and nonchalant, doesn’t sound very positive either. Both of these people from my personal experience would answer any/all questions I ever had and never gave me the impression they were annoyed by my questions, but that they had cure in sight for me and that confidence went a long way with my psyche during a very mentally grueling experience. I strongly recommend you consider a second opinion, especially if you say you are either a stage IIIc or IV.

Hang in there, once you get doctors you feel have your best interest at heart and have a treatment plan in place (and get that first treatment under your belt), you will be surprised by how much more positivity and hope this will bring. Please continue to come back here and post with questions and information (as rp1954 suggested) so we can help get you through what can be a tough time physically and emotionally.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Gravelyguy
Posts: 75
Joined: Thu Jul 05, 2018 6:03 pm

Re: New diagnosis and scared

Postby Gravelyguy » Mon Oct 01, 2018 7:13 pm

Hi Spazzyjanet,

I would add that if you can get to a major cancer center for a 2nd opinion I would do it. My first visit with my local oncologist left my wife and I wondering how many months I had left. I have a semi retired oncologist friend who was very optimistic about my outcome and referred me to Mayo. They were very quick to tell us they thought they could cure this.

We left feeling totally different about the same situation. The major centers are much more up to date on what can be done. My poor local oncologist is seeing people for all types of cancer and is just going off the script instead of being cutting edge.

Hope this helps,

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

User avatar
ANDRETEXAS
Posts: 601
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: New diagnosis and scared

Postby ANDRETEXAS » Mon Oct 01, 2018 7:47 pm

I was first diagnosed as Stage 3c....then it was changed to 3b. I know I had about the same percentage as you of positive lymph nodes, but after they told me, I tried to and did forget the number. I knew I was going to fight it as well as I could no matter what the percentage. With the help of my oncologist and the nurses, my five-year anniversary is coming up in March. You can read my signature. It is doable...and you will do it. Of anything I can say at this juncture it is to STAY POSITIVE. Try not to let any doubts enter your mind. Yes, it will be difficult at times, but you can do it. Think only about today and look forward to tomorrow. This can be done !! Andre
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Mon Oct 01, 2018 8:02 pm

I hear what everyone is saying about a second opinion. We do have a major cancer center just over an hour away in Columbus (the James). That said, if the treatment is not going to end up changing and the regiment is two weeks, I just can't justify going there versus going to the cancer center that is literally on the way to and from my current place of employment. My thought is that I go through with the PET scan, get started on a regiman (assuming no more blows come from the PET), and THEN take all of that information up to the James for a second opinion.

I think that I am also just looking for some hope. Bargaining for someone to tell me that 11 positive nodes aren't so grim, and that it does not automatically lump me in with stage 4 in terms of prognosis. I'm not ready for my best hope to be life extension with only a top notch team of specialists, I'm looking for hope that's there is a decent chance of remission. I still want to believe that I can live to see my kids graduate from college, to retire, to have grandkids.

If it helps at all, my tumor was grade 2, moderately differentiated, didn't perforate, but was sunk into the tissue and the MMR didn't show any genetic mutations resistant to standard drugs,
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

User avatar
ANDRETEXAS
Posts: 601
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: New diagnosis and scared

Postby ANDRETEXAS » Mon Oct 01, 2018 10:30 pm

I believe I had 8+ positive nodes. While I did call M D Anderson in Houston, after review, I knew I could get the same care at Texas Oncology (who have some great doctors) here in Austin. Depending on your treatment(s), it is certainly feasible to get your care closer to where you live without affecting your results.
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Tue Oct 02, 2018 5:00 am

Andre,

Thank you for the hope. I see that yours still has not spread after nearly 5 years and that it exactly the kind of news that I am needing right now. All of this is so surreal to me still. One month ago, I went to the ER with severe constipation and dehydration from what I thought was just a stomach bug and today I have an Ostomy, and facing chemo and...

Let me just say that the stages of grief are not linear. They are cyclical. And I am going through several cycles a day. Fear is debilitating, so I need to hear and think about the chances I do have and cling to those.

If my Oncologist doesn't do a 180 on the next visit (I think he realized he effed up when he couldn't remember the results of the chest CT they did in the hospital and I made him go track it down and confirm for me that it didn't show anything), I'm thinking that I will look for a referral to at least another doctor in the practice who is better at managing tone and patient emotions.

And then there is the waiting. I've known that I had cancer in some form for a month now. By the time of my next appointment with the oncologist to review PET scan results it would have been 6 weeks. I know that they would not have started chemo until the 4-5 week mark after surgery anyway, but it seems like we should be in more of a hurry.

Right now, I am just praying that the PET comes in clean as expected and puts the final nail in the coffin that the liver spot is a hemangioma.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

User avatar
ANDRETEXAS
Posts: 601
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: New diagnosis and scared

Postby ANDRETEXAS » Tue Oct 02, 2018 11:47 am

Hoping the PET scan does come back clean. I started chemo a month after I had surgery. There are different opinions (after surgery healing) as to when you can start chemo for the best effects. I think as soon as possible, but a six to eight-week time frame after surgery would still be adequate, IMO, for good results. Of course, you and your doctor should discuss anything that is particular to your case.
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

Pat
Posts: 23
Joined: Fri Jan 15, 2016 6:21 pm
Facebook Username: Pat Henderson Sins
Location: Southern California

Re: New diagnosis and scared

Postby Pat » Wed Oct 03, 2018 2:03 am

I had a substantial number of nodes effected and, knock on wood, am still NED. I hope this gives you some hope for a NED future as well.
57 yr old. Dx 9/2015, Stage IIIc T4aN2bM0 BRAF/V600e
10/2015 Right Hemicolectomy
High Grade, poorly differentiated Adenocarcinoma of the Hepatic Flexure
25 of 30 lymph nodes cancerous extranodal extension
Barrett's Esophagus
11/2015 Folfox 12 cycles stopped 3x for month each due to low blood counts
7/30/2016 - finally finished Folfox
9/15/2016 - Clear colonoscopy, 1 sessile polyp
9/7/2017 - clear colonoscopy, next due in 3 yrs

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: New diagnosis and scared

Postby O Stoma Mia » Wed Oct 03, 2018 3:16 am

Spazzyjanet wrote:...If it helps at all, my tumor was grade 2, moderately differentiated, didn't perforate, but was sunk into the tissue and the MMR didn't show any genetic mutations resistant to standard drugs,

I don't have any experience with lymph node involvement, but I would say that it would really help if you were to create a signature to go at the bottom of each and every one of your posts.

If you are looking for support that would be specific to your situation, then a Signature would help to show the basics of your diagnosis, staging, and treatment regimen, as well as a sort of brief history of all of the tests, procedures, etc. that have been done so far and those that are yet to come. This is so that persons who read your current post (and any of your future posts) can determine whether or not they have anything relevant to say -- and readers do this by comparing their own situation with what you have listed in your signature.

It is important to note that the details that you put in the body of your first messages need to be summarized and copied over into your signature, because within a week or two your initial posts will be so far down in the message board archive that people won't be able to find them easily and they may not even know or remember that you ever posted this kind of detailed information in your earlier messages. If you want to receive relevant replies to your current and future posts, you need an up-to-date signature so that each time you post something new the readers will be constantly reminded of your current situation.

Remember, the best kind of feedback usually comes from people who are in the same situation as you, but readers won't know if they are in the same situation as you unless you put your details in your signature.

It can also help if you put your stage (e.g. Stage IIIc) in the title of your posts so that readers that are just scanning the titles can focus in on your current situation by clicking on your post title. For example, in my opinion, it would have been better if your first post had been entitled, "New Stage III-C diagnosis and scared" because it would attract the right kind of readers from the outset.

A link for creating your signature is given below. It doesn't take long to set up a signature, then you will have a short summary of your situation that can be displayed at the bottom of all your future posts. (You can always go back later to update it in case the need arises.)

Here's the direct link for creating your signature:
http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

And here are some tips
Signature tips

Also you should try to post more messages, because you need to have a certain number of approved messages before you can be be promoted from the status of 'Newly Registered User' to a higher rank with more privileges.

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: New diagnosis and scared

Postby Spazzyjanet » Wed Oct 03, 2018 11:48 am

I submitted a signature that hopefully comes through on this posting, and will follow your tips as best I can.

Thanks to the other person who posted about some positive outcomes. Did you find that your Oncologist had an optimistic tone at the beginning? Mine said, "With treatment, we can cure SOME stage 3 and 4 CRCs."

He made it seem like the exception rather than the rule, and that hasn't helped my peace of mind or ability to sleep. Especially since friends hear, "Oh, they removed the cancer. You're good then."

American Cancer Society gives 53% 5-year relative survival. The Onc lazily said 60% after I pressed him to tell me that my chances might be better because of age, insurance, etc. "Well, that might have some impact"

It's such a dichotomy right now with the Oncologist sounding grim, and friends who mean well, but just aren't even close to knowing how it feels for your life to be a coin flip. I know I'm ranting, but I feel very isolated right now.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

michelle c
Posts: 1866
Joined: Wed Dec 02, 2009 3:58 am

Re: New diagnosis and scared

Postby michelle c » Thu Oct 04, 2018 8:28 am

Hello,

I just wanted to reply because I remember how scared I was around my diagnosis over nine years ago and I am still here. My kids were 12 and 9 and I was terrified that I was going to die and not be there for them. I also had a spot on my liver but a MRI confirmed that it was a cyst.
I had colon cancer and had surgery and 12 treatments of chemo. It was doable....just :) It was a very anxious time having follow up CT scans and wondering if it had come back. I understand how you feel. I recommend that you stay away from Dr Google as it only heightened my anxiety. Although I had wonderful supportive family and friends I felt very alone. This forum is amazing and helped me so much. Take one day at a time. Wishing you the best xx
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

hiker
Posts: 86
Joined: Thu Aug 09, 2018 10:15 am

Re: New diagnosis and scared

Postby hiker » Thu Oct 04, 2018 9:03 am

Hey Spazzy,

It doesn't sound as though you're pleased with your current oncologist and based on what you've told us I don't blame you. You need an oncologist who you have faith in - the treatment plan this person puts together may save your life...or not. I had 3 different oncologists (2 local and 1 regional/national) who told me I would be dead in 2 years with chemo (much sooner without). That was 18 months ago and as of my last scan there is no evidence of cancer in my body. I'm where I am because of an incredible oncologist and surgeon at MSK in NYC and their amazing support staff. And I've never understood the waiting times between scans and getting results - yours seem excessive. I get my CT and MRI scans in the morning, have lunch somewhere in the city, then meet with my oncologist that same afternoon and she goes through the scans with me right then...no waiting.

I urge you to get a second, third or even fourth opinion (especially if you are stage 4). Major cancer centers can work miracles.

Also, your friends telling you "you're good" has no impact on your survival. They mean well and it's a nice gesture, but don't let that lull you into not treating your cancer as aggressively as possible.

hiker

PS. The internet is a wonderful thing, but it can be darn depressing to a person diagnosed with cancer who is looking for hope. Use it sparingly. When I told my oncologist I had lost all hope before coming to her, she replied "there's always hope." You're an individual...not a statistic.
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

zephyr
Posts: 141
Joined: Thu Aug 18, 2016 7:31 am

Re: New diagnosis and scared

Postby zephyr » Thu Oct 04, 2018 12:17 pm

There are several Stage 3 and Stage 4 survivors on this forum. They are now NED and hanging around (I think) simply because they’re good people, trying to help others. Just sayin...

There’s ALWAYS hope, always a chance. Treatments are developing amazingly fast. I was recently told by a research oncologist specializing in colon cancer that the next really big thing could happen any day.

As hiker said, you’re an individual, not a statistic.
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, 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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 47 guests