Just diagnosed with rectal cancer and terrified

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Jlschueler
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Joined: Tue Jun 12, 2018 2:54 pm
Facebook Username: Jessica.ramey

Just diagnosed with rectal cancer and terrified

Postby Jlschueler » Tue Jun 12, 2018 3:01 pm

Hello, I just found out this morning that I have a mass in my rectum. I had been experiencing intermittent bleeding for about six weeks. I have all my follow up scheduled, but won’t know anything for a week. I’m terrified that because it was bleeding that it will be later stage. I’m also terrified that I’ll have to give up my job as a mental health therapist due to this. Any support or advice would be appreciated.

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juliej
Posts: 2859
Joined: Thu Aug 05, 2010 12:59 pm

Re: Just diagnosed with rectal cancer and terrified

Postby juliej » Tue Jun 12, 2018 7:12 pm

Hi, Jessica!

I know how you feel. Getting a cancer diagnosis is probably the most frightening event in a person's life. Your mind shuts down and you're terrified of what it means, what's to come, will you ever get your life back, etc.

Back in 2010, I was informed by a dismayed oncologist that I would probably die before 2013. It was the worst day of my life. I cried non-stop after leaving her office. I was told I was Stage IV with numerous mets in my liver and a tumor in each lung. Not operable, they said. Chemo for life, they said. Not a chance in hell of living longer than 18 months with chemo and only 6 months without it, they said.

But here I am! It's 2018 and I'm cancer free! Let that be a light in your darkness.

Hopefully, your's will be limited to your rectum. The bleeding alone is not an indicator of stage. You'll need a CT scan to determine if it has spread. So make sure there are plans for that. I won't lie to you: the chemo isn't fun. But it's doable. As far as your job, some people keep working because it keeps their mind off things. Others take time off or work part-time. I kept working and found it a good distraction from treatment, but only you know if that will work for you.

Whatever happens, we are here for you! Feel free to ask questions or just vent. We've all been in your shoes and there are some amazingly insightful and wise people on this forum. For now, though, just breathe. Try to distract yourself until you get your followup appointment. Watch movies, be around friends, whatever brings you comfort and keeps your mind from going to bad places. And avoid Googling anything!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

SteveNZ
Posts: 140
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Just diagnosed with rectal cancer and terrified

Postby SteveNZ » Tue Jun 12, 2018 8:02 pm

Hi Jessica,
You will be fine. I share that, as I was very similar with cancer in my lower rectum.
Bleeding is a symptom but no indicator of the stage so please try to be at ease.

Yes it is an awful road to travel but that is all it is.
And believe me you will be a much more informed (and better) 'mental health therapist' through it all. You will enjoy the basics of life, like birds fluttering around, so much more.
I am in the awful time of having completed radiation (rectal cancers most often have radiation-chemo first) awaiting surgery. Only then will they know for sure what is up. My mind plays lots of 'mind games' of what it might be, how awful I will look, how long will I live....etc etc Such is perfectly normal as is having a huge cry for a day or two. Kiwi guys are not meant to cry so I just pretend I am an emotional Italian like on the movies... Haha

My job situation is that the type of standing, continual walking/moving and lifting required mean't that I have to stop for quite a while. But there are plenty of jobs I can still do. BUTT only with a comfy chair or cushion...LOL. In my case, and likely yours, it is your physical (and mental) ability at each stage that governs work load. I think you should be OK even with working part time through the worst of it.

Bless you heaps :D :D
Steve
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

Jlschueler
Posts: 3
Joined: Tue Jun 12, 2018 2:54 pm
Facebook Username: Jessica.ramey

Re: Just diagnosed with rectal cancer and terrified

Postby Jlschueler » Tue Jun 12, 2018 8:46 pm

Thank you both! I really appreciate your stories and support. I’m 39 and have no family history of any cancers (which I’m finding out it not unusual) so this is a real shock. I don’t know anything about the tumor, except that it’s cancerous. Looking back, I fear there were signs I missed, so I’m kicking myself for that. Just trying to process how this will impact my life. I’m prepared for the whole chemo/radiation/surgery ordeal, but I’m very nervous about the progression/prognosis. Hearing you all come out the other side is very helpful, so I truly appreciate you sharing. I see the oncologist next Tuesday and surgeon 7/3 (but my brother knows him and he’s reviewed what he has and feels okay with the delayed meeting). Ugh, it’s just so much to take in.

hawkowl
Posts: 115
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Just diagnosed with rectal cancer and terrified

Postby hawkowl » Wed Jun 13, 2018 1:01 am

I was in your shoes 3 1/2 years ago. A new cancer diagnosis is terrifying...but I promise that it will get easier once you know all the details and have a treatment plan in place. Treatments are effective and there are many success stories here and elsewhere that will inspire you and give you hope.
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

heiders33
Posts: 289
Joined: Sat Nov 04, 2017 11:08 am

Re: Just diagnosed with rectal cancer and terrified

Postby heiders33 » Wed Jun 13, 2018 6:02 am

When you know your staging and have a plan in place, things will get better, I promise. I was in your shoes over a year ago and I remember that first week. My emotions didn’t know whether to go up or down and every appointment would bring new news and was terrifying. I was able to work through my treatment, taking two weeks off after surgery and one or two days around each treatment. Thankfully I was able to work from home part of the time, and we have an extended sick leave policy. Please do keep us posted on what you find out.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump
October 2018: Clear CT and colonoscopy

NHMike
Posts: 1725
Joined: Fri Jul 21, 2017 3:43 am

Re: Just diagnosed with rectal cancer and terrified

Postby NHMike » Wed Jun 13, 2018 8:59 am

I was in your place June 2017 and know how you feel. A lot of thoughts go through your head the day of diagnosis and for the weeks and months to come. A lot of the treatment paths depend on the staging so you're dependent on that from imaging and pathology. I was diagnosed Stage 3B which meant chemo+radiation, surgery, then chemo, then surgery to reverse the illesotomy. That's just one example. Therapies are changing on a regular basis because of new technology and big data.

There were people that were one or two weeks ahead of me, a month or two ahead of me and many that had already gone through the whole thing. There are a lot of people here with a lot of experience that have gone through all of the different stages of Rectal Cancer and there's a lot of knowledge and wisdom here to help you get through it. Please feel to ask questions: medical, treatment, emotional, logistics.

There's a huge amount of stuff to learn but it's easier to absorb it over time; and what you need to learn is dependent on staging. I know that it's a pain to wait for it but that's the way it is.

On working: I worked through Neo-Adjuvant Chemo and Radiation, took two weeks short-term disability for surgery and worked through adjuvant chemotherapy. What people can do varies vastly from person to person.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Just diagnosed with rectal cancer and terrified

Postby Caat55 » Wed Jun 13, 2018 10:01 am

You will get through this, it is hard for sure but life moves forward. I am an occupational therapist, treat mostly kids but adult after brain injury and stroke too. I am still working, getting on floor,therapy balls, saw a new one year old yesterday and was able to help both her and her mom. The plan you get is a path to the other side of this. Best of luck.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

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Atoq
Posts: 315
Joined: Wed Oct 25, 2017 9:31 am

Re: Just diagnosed with rectal cancer and terrified

Postby Atoq » Wed Jun 13, 2018 10:30 am

Jlschueler wrote:Hello, I just found out this morning that I have a mass in my rectum. I had been experiencing intermittent bleeding for about six weeks. I have all my follow up scheduled, but won’t know anything for a week. I’m terrified that because it was bleeding that it will be later stage. I’m also terrified that I’ll have to give up my job as a mental health therapist due to this. Any support or advice would be appreciated.

Hi! I got diagnosed in October 2017 and went through chemoradiotherapy, an emergency colostomy, removal of tumor with ileostomy, ileostomy reversal. I have worked all the time except for two weeks after surgery, working helped me to continue with my life and gave me also the feeling that I was coping with the situation. The most important advice for me are to read the forum and ask questions to know what is ahead, take one step at time and try to keep on training, because it really helps after surgery.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Just diagnosed with rectal cancer and terrified

Postby Bev G » Wed Jun 13, 2018 1:06 pm

Hello and welcome to the forum. You are facing the hardest time of this challenge right now--you know it's something not good, but can have no realistic expectation of what it will be. Waiting is awful. All you can really do is buckle up for now. Don't have any expectations for yourself right now. Do whatever you can to go with the flow. Practice deep breathing. The waiting time will get done, but it may feel like an eternity. Don't Google...at all...ever.

I was diagnosed stage IV in December 2009. I was given a 5% chance of surviving 5 years. Yup. Still here and no signs of any cancer since my liver resection in 4/10.

We'll be glad to help support you in any way we can. We have many, many members here who survived rectal cancer.

Visit us any time. We'll always try to help. Keep breathing!!

Warm best wishes,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

skb
Posts: 32
Joined: Tue Mar 28, 2017 2:00 pm

Re: Just diagnosed with rectal cancer and terrified

Postby skb » Wed Jun 13, 2018 11:27 pm

Don't worry, Jess. You will be fine.

I was diagnosed with Stage 2 disease last year and here I am, with no evidence of disease. I worked through the entire time except when the surgery was scheduled.

This will make us mentally stronger.So you will be able to perform your job even better.
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from tumor location: no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left
8/11/17: starts wait and watch at Univ of Minn.
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
1/28/18 colonoscopy - no tumor
4/4/18 MRI -- no tumor still
6/13/18 Sigmoidoscopy- no tumor still

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kellywin
Posts: 484
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Just diagnosed with rectal cancer and terrified

Postby kellywin » Thu Jun 14, 2018 12:59 pm

Welcome Jessica,

We know what you're experiencing. It's absolutely terrifying. I had the same thing, bleeding. Rectal and colon cancers are tough because there are little to no symptoms, so don't go kicking yourself for thinking you missed something. I never in a million years thought younger people got this, my doc thought for sure it was hemorrhoids, and bam, rectal cancer, @ 40, daughter was 7 or 8, ended up being stage IIIC. But that was 5 years ago. Follow Bev's advice, do not go asking Dr. Google, anything. And remember while you are reading through these threads that everyone has different experiences. Some deal with chemo better than others, some deal with radiation better, some rounds are better than others, etc. I know how scary this is. But you will very possibly be able to work throughout treatment, many of us do. I never missed a day during radiation, took off some time for surgery (mostly because I needed the mental break) but back to work during chemo and just took off a few days around each infusion.

Does it suck? Yes, it does, straight up. But you'll find a way to work through it. Once you get a plan in place, you'll at least feel a little better.
Kelly, mom 13 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2018 Clear CT!

Jlschueler
Posts: 3
Joined: Tue Jun 12, 2018 2:54 pm
Facebook Username: Jessica.ramey

Re: Just diagnosed with rectal cancer and terrified

Postby Jlschueler » Tue Jun 19, 2018 5:22 pm

Thank you all for your wonderful words of support! After talking with my doctors and getting scans out of the way, I am feeling calmer. I do have a question though:
I had a pet scan that came back clear (except for my tumor), no spread to other organs. Is it still possible I could be staged at a four? I know I’ll find out more later this week, and even more after surgery, but just wanted a general understanding of what a clear pet scan means in the bigger picture. Thank you!!!

NHMike
Posts: 1725
Joined: Fri Jul 21, 2017 3:43 am

Re: Just diagnosed with rectal cancer and terrified

Postby NHMike » Tue Jun 19, 2018 6:38 pm

Jlschueler wrote:Thank you all for your wonderful words of support! After talking with my doctors and getting scans out of the way, I am feeling calmer. I do have a question though:
I had a pet scan that came back clear (except for my tumor), no spread to other organs. Is it still possible I could be staged at a four? I know I’ll find out more later this week, and even more after surgery, but just wanted a general understanding of what a clear pet scan means in the bigger picture. Thank you!!!


Do you have access to the pathology report for the PET scan? That might answer your question.

Spread is usually first to the liver and/or lungs so they cover those areas or basically your torso. I recall the path reports stating that there wasn't anything found anywhere else from the scans of those areas.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Just diagnosed with rectal cancer and terrified

Postby Caat55 » Tue Jun 19, 2018 7:07 pm

It is hard to wait put it is better to get it right than to try to figure this out on your own. Cancer is different for us all but honestly I got so much better information here than I got from doctors and nurses, or got info here I could use to ask them questions, be proactive.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds


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