NEW-Need some positivity here.

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teacher2017
Posts: 120
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 09, 2017 1:32 pm

Hi- I am 48 yrs old. I have no idea if this is hereditary. But I was just diagnosed via colonoscopy that I have a malignant mass. The doctor said the biopsy said cancer. The ctscan said it hasn't spread anywhere. I made an appointment to talk to a surgeon - I REALLY JUST WANT THIS OUT TOMORROW!!!! I can't sleep thinking I may not see my children grow up. Dr said he couldn't get the scope threw. And that its been there a while. I don't know what to ask this surgeon. Will i need chemo? Please give me your advice here. I feel like this is my death sentence. I'm terrified.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

weisssoccermom
Posts: 5754
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: NEW-Need some positivity here.

Postby weisssoccermom » Sat Sep 09, 2017 6:53 pm

First of all, welcome to our site. I am sorry you had to find us but hopefully you'll find a wealth of information here that can help you.

Now, you didn't say where exactly your mass was located so it is difficult to give you some specific information. The reason is simple. IF you have a mass in the rectum or a mass that is located in an area that is classified as 'rectal cancer' your treatment will be different and there will be more testing before you begin any treatment. I truly do understand the whole 'I want it out NOW' line of thinking....I believe we all felt that way when we were diagnosed. Heck, when I woke up from my first colonoscopy that diagnosed my tumor, I wanted the surgeon to just 'come on down' and operate then and there. I figured that I had had the prep and was ready to GO. Fortunately, that didn't happen and I am now glad that it didn't. I'm 11 years out and I shudder when I think of how naive I was back then. I can't imagine what might have happened had my way (after waking up) had been what my surgeon had done.

IF you have a GP that you have a good relationship with, see him/her and ask him/her to order a CEA test for you. It is a simple blood test that tests for a protein that tumors often give off. However, please note that not all tumors express this protein so seeing a 'normal' value really means nothing. Over the years, there have been many members on this board that have had big or multiple tumors who have NORMAL CEA levels and then there are others with even just one small tumor who have elevated levels. This test is good for the future....to indicate if you may be having a recurrence. Before ANY treatment (surgery, chemo, radiation, etc.) you should have this test done to give you a baseline number. I would also suggest that if you have a GP that you trust/like, make sure that he/she is cc'd on each and every report. Sometimes, facilities don't want to give the patient a copy of the test...but if your GP is copied on every test/procedure, you can always get the copy from him/her.

My next piece of advice is to get to the center that did your colonoscopy and get a copy of the report for your scope. Next get a copy of the pathology report. Get a three ring binder...complete with dividers and start a section for pathology reports, CT reports, colonoscopy reports and blood work. You will be having more of these tests (and others) from now on. Don't rely on the doctor to give you the results....GET A HARD COPY OF EVERYTHING! Don't forget your CT report as well and whenever you get blood work done, get copies of those tests as well. From now on, you will likely be having blood drawn on a regular basis.....CBC, CHEM panels, CEA and other tests.

Now, if you do have rectal cancer, be prepared for more tests. You will likely get an endorectal ultrasound (also called a transrectal ultrasound) to help determine the depth of the tumor into the rectal wall and to better see the local lymph nodes around the rectum. Again, IF you have rectal cancer, you will likely have chemoradiation and that takes planning/mapping, etc. before treatment begins. Be prepared that if you have rectal cancer, all of these tests and planning could take another 2-4 weeks to accomplish before beginning any treatment. I know that it isn't easy to wait when you just want the dang thing OUT....but it is in your best interest to truly know what you are dealing with before starting any treatment.

If you have colon cancer, your doctor will still likely do blood work (make sure to get that baseline CEA regardless of colon or rectal cancer) before scheduling any surgery. Unless there is an imminent life threatening emergency, surgery isn't going to happen tomorrow...even with colon cancer. It may take another week....it may take another two....it's hard to say. Your doctors want to know that everything is planned well before they just go in and cut out the tumor.

As for whether or not you are going to need chemo....no one can tell you that until you have more testing (rectal cancer) or surgery (colon cancer). GENERALLY, those stage II and above generally do some form of chemo ....so just be prepared. I know its scary to hear that....its something that none of us want to hear but.....you have to be prepared for the likelihood that yes, chemo is a good probability for most cancer patients. One thing to remember.....not all chemos are the same. You've likely read stories or seen those made for TV movies about people with breast cancer and yes, the chemo for that disease tends to be harsher than the chemos for colorectal cancer. Don't fret about something now that you have no control over.

Right now.....take a breath, relax and take this one step at a time.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: NEW-Need some positivity here.

Postby Volfan » Sat Sep 09, 2017 7:26 pm

Sorry you have to be here but for support you can't beat this support group.
For me when I heard I have cancer I got this empty feeling wondering if I'll be around the next month. Just plain scared to death for what's next.
What I want to stress is that feeling gets a lot better. Once you get a plan in place you will find comfort in it.
As you wait to see the doctor write down any questions you might want to ask. There will be a lot of information that first appointment so having a checklist of stuff for the doc doesn't hurt.

As the previous post says. Try to breathe and try to relax.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

Ron50
Posts: 622
Joined: Fri Feb 10, 2006 7:04 pm

Re: NEW-Need some positivity here.

Postby Ron50 » Sat Sep 09, 2017 7:54 pm

Hi Teacher,
I was diagnosed at age 48. It turned out to be aggressive stage 3 into 6 nodes. I had a lot of chemo, every Tuesday for 48 weeks. What is positive about that you may ask? I was dxed in Jan 1998 . Next Jan will be the end of year 20 still cancer free. You have my best wishes for a speedy recovery, Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

mhf1986
Posts: 63
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: NEW-Need some positivity here.

Postby mhf1986 » Sat Sep 09, 2017 9:10 pm

I know you want this out...I wanted my husband's out ASAP. But choose your surgeon and your hospital carefully. We took the first appointment at the first hospital and I wish we would have waited for the smaller, better hospital. Surgeon operated at both.

M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
4/17: CEA 11, blood pressure medicine added
6/17: CEA 15, OX discontinued due to neuropathy, Vit D added
11/17: CEA 38, back on OX due to liver tumors' growth, switching to Xeloda too

Aqx99
Posts: 245
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sat Sep 09, 2017 10:01 pm

I know how you feel. I'm 39, and when I found out I had a rectal tumor my first thought was, "cut it out now!" It was hard to wrap my head around the fact that I would need 28 chemoradiation treatments, then have to wait for a month after that to finally get surgery. The good thing about that, though, is the radiation shrank my tumor enough to leave wide margins at surgery. I trust my medical team, they are experts in their fields.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

rp1954
Posts: 1192
Joined: Mon Jun 13, 2011 1:13 am

Re: NEW-Need some positivity here.

Postby rp1954 » Sun Sep 10, 2017 1:37 am

We found that there was such a thing as "immediate first aid" for colon cancer to drastically improve the situation; even with metastatic stage 4b. I read these articles, mostly in the first 24 hrs: 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.

Also we invested in extra blood work that may cost a few hundred dollars extra initially, and that has paid many dividends.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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susie0915
Posts: 438
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sun Sep 10, 2017 8:30 am

I agree with everyone here. Try and take a breath and be pragmatic. I had my colonscopy on a Thursday and the doctor came in and told me it was cancer, and I had an appointment the next day with the surgeon. After meeting with the surgeon, he scheduled a ct scan for Sunday to determine if cancer had spread to other organs, and a endoscopic ultrasound the following Tuesday to determine how deep the tumor had invaded the tissue and if lymph nodes were affected. The surgeon also scheduled appointments with a radiation oncologist and a oncologist. At the same time I contacted a surgeon from another hospital to set up for a second opinion. The nurse navigator also scheduled appointments with their oncologist and radiation oncologist. I did talk to a friend of my sisters who is a gastroenterologist for his thoughts as well. I met with all these doctors. Both had the same plan of treatment ( since I was staged 2A, it is fairly standard treatment). So it came down what hospital and doctors I felt more comfortable treating me.

This will consume your life for quite some time, so you really need to feel comfortable and confident in doctors that they are doing all they can to treat your cancer and provide you with the best possible quality of life. My first instinct was to just start with the hospital and doctors that the gastro recommended to get it taken care of, but I'm glad I didn't as I did end up using the doctors and hospital I sought for a second opinion.

Good Luck. I'm so sorry you have to go through this, but just know there are many on this forum at all different cancer stages that have completed treatment and have been cancer free for many years.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

teacher2017
Posts: 120
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Sep 10, 2017 8:58 am

Thank you so much for your helpful insight. It really helps. I have this cancerous mass on the upper left side-sigmoid I think. I have yet to speak with a surgeon. The Gi simply said that the ctscan was clean. Only saw the tumor and from the scan, it hasn't spread to lymph nodes or organs. But nothing is for sure. He is pretty sure they will do a resection. I just sit here thinking about all you have all gone through and hope I am strong enough too. I am 48 and never thought I'd be here.
Last edited by teacher2017 on Sun Sep 24, 2017 8:09 am, edited 1 time in total.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

weisssoccermom
Posts: 5754
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: NEW-Need some positivity here.

Postby weisssoccermom » Sun Sep 10, 2017 10:00 am

Based on your last post, pretty darn definite (if you are sure about the location) that you don't have rectal cancer....so the extra testing/appointments/wait shouldn't be an issue for you at all. I might suggest that you take a step back and unless a medical professional has told you that this is an emergency, you may want to think about a second opinion. No, no other medical professional is going to tell you that you don't have cancer....pathology said otherwise....but make sure that you like and trust the surgeon and oncologist. You can always switch your oncologist but not necessarily your surgeon. Early on in my journey, I had no idea that there were general surgeons who would do the surgery and then there were board certified colorectal surgeons. I firmly believe that patients with rectal cancer should see a board certified colorectal surgeon....the surgery is performed in a tighter space and has more probability of complications and implications for future problems. Not sure the same thing is applicable to colon cancer that is further removed from the pelvic area. At any rate though, it is something you may want to think about. Check out the surgeon that you have been referred to. Is he/she a general surgeon or a specialist? Does that matter to you?
http://www.abcrs.org/verify-a-physician-2/ This is the link to the American Board of Colon and Rectal Cancer Surgeons.....the organization that surgeons who want board certification must apply to and whose requirements they must fulfill.

If you can, find an oncologist before you have surgery.....one that you like, trust and have confidence in. You will see the surgeon a few times and then you're done with him/her but the oncologist is the medical professional that you will be seeing for years to come. He/she will be the one that will take care of you...will be the doctor you see in the early days if you are sick, will be the one that you have to contact regarding medications, etc. You want someone that you really feel comfortable with and whose office has the support that you need. Don't rush into just 'going with' the first onc you meet....unless things just seem right with him/her.

As for staging, you won't know until the surgeon goes in and does the surgery. Although the CT scan showed no spread, we all know that nothing is certain with cancer. It's very likely that another organ (lung, liver, etc.) isn't involved.....as the CT is pretty reliable at picking up spread in those organs...IF the spread is large enough to be seen on the scan. The pathology report will indicate if any local nodes are affected. Regardless, you won't know your stage until after surgery....when the pathology report from that procedure is done and the report is sent. That pathology report will tell you whether or not any local nodes are affected, how many local nodes were taken out in the excised specimen and whether or not the tumor has any negative prognostic factors (mucinous, signet cell, poorly differentiated, etc.). Make sure you GET A COPY OF THAT REPORT so that YOU know, with 100% certainty what is says....not what the surgeon/oncologist tells you.

Right now...remember to breath, relax and get as much rest as possible. You're going to be entering a new chapter in your life....one that will come with peaks and valleys...you'll have some good times and honestly some crappy ones. Listen to what the oncs say but expect the unexpected. For example, unless you are a stage I, you will likely have some chemo or at least be recommended to have chemo. The oncologist may say, "6 months of chemo"....if so, be prepared that 6 months may turn into 6,5-7 months.....simply because you may get sick and can't have chemo one time, your blood counts may be too low, etc. Things come up and IF your plans are super rigid, you'll have a more difficult time.

I know that this sounds scary...the BIG C for crying out loud BUT....it is not a death sentence. It's not a walk in the park either but treating and living through the treatments is doable and manageable. One thing for sure.....be prepared for the long haul. Even if the onc says....total, with surgery/rest/chemo is only (example) 8 months.....realize that there are followups, there are protocols to follow and you'll be seeing that doctor for a good 5 years (at least) before he/she is ready to say BYE BYE! This is a journey so get yourself mentally prepared for that.....it's not a sprint....as I heard over 10 years ago on this board....cancer is a MARATHON! You'll realize that you have an untapped reservoir of strength and tenacity that you didn't know you had and honestly, you'll be pretty darn amazed at what YOU can do and how well YOU can do it!

This is about YOU now....don't let anyone else tell you how you should act or feel. No one can tell you that because everyone is different and if someone hasn't walked the road you're about to embark on, they honestly can't know how you are feeling. They can tell you how they THINK they would act but once you hear those words, 'you have cancer' all preconceived notions go out the window. You must decide if you are going to be a part of your health care decision making team or a patient who would rather the doctor and all medical professionals make that call without your questions/input. Don't let anyone tell you that you should be questioning if you don't want to....don't let any friend/relative tell you that you MUST question every detail. YOU are the patient...it's YOUR life and YOU have to be comfortable in YOUR approach to your care.
My point is....everyone is different....everyone reacts to their diagnosis differently....there is no 'right' or 'wrong' way to act. It doesn't show weakness if you need help with the what is happening in your body (medication/therapy)...so don't let anyone guilt you into thinking otherwise.

Just take a deep breath, actually a FEW deep breaths, get your resolve set that you are going to do what is necessary to fight this disease and be prepared for a new journey that you will be going on in the very near future. You know, I can honestly say that 11 years out now, I AM a different person...all because of my cancer diagnosis. I have a different perspective on life.....I appreciate the 'little things' a whole lot more and I realize (for me) what is and isn't the most important things in my life. I'm not saying that I am glad that I was diagnosed with cancer....just that, even through the 'bad' and unexpected times, I became a different person and honestly, I think most cancer patients do find that their diagnosis has some positive impact on them.

Good luck.....be comfortable with your decisions...try to stay away from playing 'Dr. Google' (heck we all did and still do it!!) and do what is best for YOU! This is all about YOU now. Tell your kids (assuming that they aren't little munchkins) because the older they are, the more perceptive they are. Don't hide your diagnosis from them. Above all, until you know the staging, DON'T ASSUME THE WORST!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

DarknessEmbraced
Posts: 2832
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: NEW-Need some positivity here.

Postby DarknessEmbraced » Sun Sep 10, 2017 10:09 am

I'm sorry you're going through this and hope the meeting with the surgeon goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

ValZen
Posts: 14
Joined: Fri Sep 08, 2017 8:16 am

Re: NEW-Need some positivity here.

Postby ValZen » Sun Sep 10, 2017 10:25 am

Hi Teacher! I read your post and my heart goes out to you - I can relate so much to how you're feeling as I went through the same thing on June 19th. I'm now heading into my 4th chemo treatment next week and my oncology team is being very positive. Unlike you, I do have spread into 1 distant lymph node, which puts me into stage IV. Even at that, there are so many people on here at that stage who have made full recoveries which has been very inspiring to me. I think that's HUGE that your CT scan shows it hasn't spread - that's very, very positive! You've come to the right place this board - just reading the posts before mine - it's amazing how caring the people on here are and the time and thought they take with responses. Please try and relax as much as you possibly can (I know that's a hard thing to do right out now, but I know myself, worrying just makes you feel lousy...) and stay hopeful because you have a journey ahead of you that's only going to make you stronger as a person and your future is bright!

teacher2017
Posts: 120
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sun Sep 10, 2017 11:07 am

weisssoccermom & ValZen - Thank you so much! I have to stop googling. It makes me crazy.

Thank you all for your input!
I have so many questions...If it is an old and large tumor is it a stage 4? Will Chemo make me lose my hair? Can I still work? How do I tell a 12 and 15 yr old that their mother has cancer? It's a disgusting place to be.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

WarriorSpouse
Posts: 80
Joined: Tue Aug 16, 2016 9:02 pm

Re: NEW-Need some positivity here.

Postby WarriorSpouse » Sun Sep 10, 2017 11:44 am

I am sorry to hear of your circumstances that has brought you to this forum.

There are many caring and knowledgeable people here, and most would agree to find a major cancer center for at least a referral or a proposed plan of action. We do not know where you live, but some major cancer centers that many on this board discuss often are Dana Farber in Boston, Sloan Kettering in NYC and MD Anderson in Houston. I am sure that there are others out there, but you need to provide some area in which you live, so that the people who live close can chime in on suggestions for you.

There are many survivors on this forum who can assist you along the way and spouses who have witnessed these circumstances from being present. We will be here for you along the way. Be purposeful in your diagnosis, surgeries, and proposed treatments. Being on offense is your best defense in the fight against this disease... Please keep us posted and we will chime in when appropriate and based on what you see and are told.

We are with you!
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

NHMike
Posts: 544
Joined: Fri Jul 21, 2017 3:43 am

Re: NEW-Need some positivity here.

Postby NHMike » Sun Sep 10, 2017 11:48 am

US News and World Report Cancer Hospital Top 20 Rankings: http://www.medscape.com/viewarticle/866909

A ton of great advice from previous posters already.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy


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