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Newly diagnosed

Alice514
Posts: 21
Joined: Mar 2019

Hello all,

I am a 42 year old female who was diagnosed a month ago with colorectal cancer. I had been having rectal bleeding for quite some time, but I chalked it up to hemerrhoids since I had other symptoms (itching, burning) and I'm overweight and my diet isn't the best. When I finaly went in to see my primary care physician about it because the bleeding continued even thought the other symptoms were under control, my PCP sent me to a GI who performed a colonoscopy that found two polyps- a small benign one in the upper right, and a larger cancerous one in the lower left. I had a CT scan the day after diagnosis which came out clean. I believed I was headed for surgery, and had made my peace with that. Last week I saw a colorectal surgeon and everything changed. Not only had the early staging not been completed (no bloodwork had been ordered, and I still need an MRI), but I found out the cancerous polyp was actually in the rectum. I had thought it was in the sigmoid colon. So rectal cancer, not colon cancer. Whole different ballgame as far as treatment, apparently. And the surgeon said that the biopsy showed that lymphovascular invasion was present, which I don't think my GI really brought to my attention. (But I was kind of stunned, so maybe he did and I just didn't register what it meant.) When I thought it was a stage 1 colon cancer and I read about treatment, I actually felt invigorated. I wasn't looking forward to the surgery, but I was determined that I was going to change my life for the better afterwards. I've started walking every day and eating right. The thought of red meat has made me feel repulsed. But since the consult with the surgeon, and the specter of chemo/radiation and a "not fun" surgery (as she put it), it's been harder keeping my mood up. I was also diagnosed with anxiety disorder a couple of years ago, so this is playing havoc with that, particularly at night. I've had night sweats and disturbed sleep. My usual bag of tricks (melatonin, benadryl, Tylenol PM, meditation videos, white noise) sometimes work, but sometimes nothing works. And I lose my appetite after bad news, so I've dropped perhaps 12-15 pounds since mid February. (Ironically the reason I DIDN'T consider cancer as a possibility was because not only did I not have unusual weight loss or fatigue, I had actually put ON weight in the last couple of years partly due to the anti-anxiety meds I was on.)

The only time I've cried during the last month was when a biopsy of the site where the polyp used to be came back as "no active disease at site." But as it turns out, while it wasn't bad news, it didn't really change the path that I'm headed down. So far the waiting in between appointments and tests and test results, and navigating insurance has been one of the biggest sources of stress. Last week bloodwork came out clean (CEA was 0.6), but I still don't have an official stage as I am still waiting for MRI. The surgeon wants to have all the data ready to send me off to oncology. I'm certainly not looking forward to chemo/radiation, but I also just want to get this process started ASAP. Part of me feels like if I can have the chemo/radiation to focus on, maybe my mind won't keep surging ahead to recurrence.

At this point I'm trying to focus on posts where people share their successes. Which may be sticking my head in the sand, but I need the positive energy. I also would like to hear about experiences with chemo/radiation, so I will have an idea about what I might encounter (for good or ill), or what questions to ask. For example, when people say that using a particular lotion was helpful, etc.

I'm also trying to get a mental health appointment to get some extra help dealing with this. My anxiety was actually diagnosed by an internist, so I've never seen a psychatrist before. And trying to find one has giving me anxiety. Lol. Has anyone out there been prescribed antidepressants while going through chemo/radiation?

Thanks in advance for any advice. 

**Edit** Also looking for experiences working while doing chemo/radiation. 

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

This will be short and sweet, because I am at work, and not really supposed to be on the computer. 

You are experiencing all the normal reactions to diagnosis.  Its a ride, and you have just jumped on. 

My personal experience with that night time anxiety, whcih led to many sleepless nights and the feeling my head was going to explode, led me to find a guided imagery cd on Amazon. I put it on when I went to bed, and I followed the instructions. It was miraculous!  It worked for me, and is worth trying. You never know, it may work for you, and save you seeing a psychiatrist. 

Thats a start to my advice. HA!  I have to sign off.  Just wanted to let you know that your emotions are normal, and that IT GETS BETTER, especially once you start treatment. Weird as that sounds, and it will be a ride and a half, you know you are 'doing something' and that alone helps.

Others will be along soon (weekends can be slow), and I'll be back. 

Welcome to the forum nobody wants to join.

Tru

Alice514
Posts: 21
Joined: Mar 2019

Thank you, Tru. I think I found the CD you're referring to on Amazon, and I ordered it. There are several meditation videos I listen to on YouTube that usually help me sleep, but they've been ineffective lately. And they're too short, so just when I might start to drift off, they end and I'm awake. 

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Tru -

 

Can you tell me which specific CD you are using?  There are so many.

 

Thanks

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

https://smile.amazon.com/dp/1881405591/?coliid=I37BXVJ9NHFXFG&colid=3IKG5KF6HQH73&psc=0&ref_=lv_ov_lig_dp_it

A Guided Meditation to Help You With Chemotherapy by Belleruth Naparstek. 

For me persoanlly, it was nothing short of miraculous. 

Tru

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

Not me, but a good friend was diagnosed and treated for rectal cancer about 10 years ago.  She had a temporary colostomy, chemo (I don't know about radiation.)  She was "reconnected" and been considered cured for 5+ years.  She's living a normal life.

My colorectal cancer is stage 4 Appendix cancer; I just had my 5th surgery, but am basically living a full normal life as well.

It's tough, but we learn we can handle much more than we ever imagined.

Alice

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

Ignore

Alice514
Posts: 21
Joined: Mar 2019

Thanks, Alice. I had read an article about people with severe IBS who elected to get a colostomy and are speaking out to fight the stigma about them. One lady was a bodybuilder! So I had decided from the get go that even if it came to a permanent colostomy, there are surely worse things to live with. (But still hoping it doesn't come to that!Wink)

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

I highly recommend that in addition to finding a psychiatrist that you find a counselor for talk therapy. The psychiatrist is only going to be prescribing medications to help you. Believe me, it will be helpful to find someone you can talk to without feeling like you’re a burden to them. I was diagnosed with Stage 4 colon cancer last summer and it has been so helpful to have someone outside my circle to talk to and at times to vent to. 

I can’t speak to radiation side effects, but when it comes to chemo side effects, be sure to tell your oncologist about all of them. Medicine is better than it used to be at managing side effects, but they can’t help you if they don’t know. See if your oncologist’s office has a palliative care team. Palliative care is all about making you comfortable and helping you with treatment. It’s separate from hospice care, which is for when you’ve decided to stop treatment. Palliative care helped me a lot with chemo side effects. 

Beyond all else, don’t be afraid to ask for help, whether that’s of your care team, here on the board, or of family and friends. It’s not an easy journey, but asking for help makes it easier. 

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

He both oversees meds and is my talk therapist (and is wonderful.)

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

Nice! Everywhere I’ve been they have been separate. Either way, make sure you’re getting both med help and talk therapy help. And just like any other doctor/patient relationship, if you don’t like your psychiatrist/therapist, don’t be afraid to go looking for a new one. It’s going to be so important that your therapist be someone you feel comfortable talking with at the most intimate of levels. They will be of so much more help to you if you’re willing to be very open with them. 

Alice514
Posts: 21
Joined: Mar 2019

I'm certainly open to any and all forms of counseling. I just know from previous experience that medications help calm my brain, particularly at night when it tends to run amok. The best sleep of my life was when I was on Lexapro. At the time my brain was doing bizarre things at night, but was completely calm during the day. Which is how I learned that anxiety can be more of a physical thing. I was perfectly content with life, and yet I was having what amounted to panic attacks in my sleep. For no good reason. 

 

Well, now my brain is agitated in the daytime, too, so I'm sure I'll need all the extra help, medicinally and therapeutically. 

suzycruise76's picture
suzycruise76
Posts: 79
Joined: Mar 2019

Hi Alice,I had been diagnosed with colorectal cancer on January 22,2019,and I had just finished my third week of treatment. I think that your and my treatments would be probably similar to each other. My doctors's team made this plan for me: 5 weeks of chemoradiation,after some rest a surgery,and follow-up chemo. Suggested time for getting rid of this cancer is 1 year,if no new bad news.My tumour is low-grade,3rd stage with no metastasis.

You could be interested in the chemoradiation,so mine looks like this: Monday-Friday I go to the hospital for radiation,and eat my chemo-pills at home. It is Xeloda dose of 1650 mg,twice a day. Weekends are with no treatments,which helps me with the side effects and a level of my energy.

 

My energy level had been low even before I got my diagnosis,so I am not sure if this treatment is getting it worse...but probably it does,because I definitely cannot do my activities I used to do before.

 

One side effect of the radiation is your skin in rectum area is getting sensitive to the point of feeling burnt. I read that some people had it worse than I (but I still have 2 weeks of this ahead of me,so....who knows). I purchased a SITZ Bath,which is VERY  helpful,and I use a cream given to me at the Nurse Clinic in my hospital. With this hepl I have no pain,just occasional discomfort.

As for your question about working while doing chemoradiation: I am sure I could NOT be working,mostly because of daily travel to the hospital for radiation,and in my case for lack of energy (I am 76 years old).

Hope you'll get a good info from your doctors,and most importantly a good care.

This was my first post on this website,I had been a lurker for a while,but I think it is great place to discuss our experiences and giving support to each other.

By the way,English is my second language,so bear with me! And I live in Canada.

Suzy

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

What a wonderful first post. Such good info for our new member, Alice. 

I'm glad you came out of lurker mode and hope to see you post more wonderful info for everyone. 

Tru

suzycruise76's picture
suzycruise76
Posts: 79
Joined: Mar 2019

Thank you wery much Tru for such a wonderful greating! As Jan said,there is nobody wanting to be here,but the group is very helpful to each other,especially new and young members. I'll be here often looking for answers,some advice and just plain camaraderie. 

Alice514
Posts: 21
Joined: Mar 2019

Hello Suzy,

Yes, my surgeon said the same thing about a year. That it would be a marathon. Thank you for the recommendation for the SITZ bath. I will look into it. Seems like it would be best to be as prepared as possible before I even begin treatment. You sound like you are doing well so far.

 

And your English is perfect. 

suzycruise76's picture
suzycruise76
Posts: 79
Joined: Mar 2019

Thanks Alice ;-). Yes,be prepared,and be happy,if some of your worries and preparations won't be needed. I shouldn't be saying that I am doing well,because I am not at the end yet (and I mean the end just of the 5 weeks of chemoradiation),but I can say it is managable and I wish you the same!Laughing

Suzy

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

I love my bidet seat on my toilet - warm water wash that has saved me many times!  That's another possibility.

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

My bidet is cold. Certainly wakes me up of a morning Panicking animated emoticon . I've never had the expereince of a warm one, I bet its nice.  I'm used to cold, and I am loath to be without one when I am away from home.  

The Sitz bath was perfect during treatment, because it was vrey soothing to sit with my burned rear in the warm water, but the bidet is definitely the better option afterwards. 

Tru

Alice514
Posts: 21
Joined: Mar 2019

I just installed mine yesterday. It is just a simple model I got on Amazon, but the reviews were good so I decided to take the pluge (pun intended). Unfortunately, my hot water nozzle is across the room from the toilet, so warm warter won't be an option. Yes, the cold water is a little bracing, but not too bad. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Welcome Alice and Suzy! I live in Canada also, Suzy. In Alberta. There is no easy way to get through the beginnings of this disease and after the diagnosis. It's a process and getting to acceptance takes time and there will always be days of bitterness, anger and resentment, that's just being human. But please do come on here as often as you'd like. There are many positive stories of hope and healing. And for some of us we will never get rid of the cancer but are able to live with it. The end goal is not necessarily to be cancer free but to have a good life that's as long as possible.

I so wish we never had new members. That's nothing personal, it's great to have new people, but it would mean they're getting on top of this cancer. But more and more young people are being diagnosed and many are diagnosed at a later stage because doctors don't expect it to be this. So we'll likely see an increase in younger people soon.

Both of you take care,

Jan 

suzycruise76's picture
suzycruise76
Posts: 79
Joined: Mar 2019

Thank you Jan for such a nice welcome to the group. I am glad to see a Canadian here as some medical terms,procedures and ways of treatment can be a bit different in the USA and in Canada. Are there members from other countries as well? I just wonder...

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Most people on here are from the states but we have several members from other countries. You're right, what we have available here in Canada is a bit limited to what they have in the states. Our process of approving meds and treatments takes so long. Also, meds have slightly different names here than in the states. But at the same time we have access to unlimited treatments without concern for coverage or limitations so it's a trade off. I can't imagine making a treatment decision based on what we could afford.

Jan

Butt's picture
Butt
Posts: 299
Joined: May 2018

When I got diagnosed I suddenly lost appetite. It was shock. Eventually I started eating.

Alice514
Posts: 21
Joined: Mar 2019

My stomach seems willing, but my brain is getting in the way. Last night I jumped off the wagon and got q drive thru fried chicken  sandwich after work. I had been eating very cleanly the past month. But I figured a fast food chicken sandwich was better than not eating and could help jump start things a bit.

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

One of the things that made chemo easier to deal with is to only eat things that sounded good. If the thought of eating certain things made you nauseous, then dont eat it, no matter what it is. One of my chemo nurses gave me that advice about halfway through and it definitely made things a little easier. 

suzycruise76's picture
suzycruise76
Posts: 79
Joined: Mar 2019

I just realized that I forgot mention my lost appetite,especially in the first week of my treatment. I wouldn't eat at all,and a look or a smell of coffee had been repulsive to me,even though I used to be a big coffee drinker. But I eat anyway,just making good choices and avoiding spices. I am lucky that I am not nauseaus at all.

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

I'm sorry that you have to find this site, but welcome to the best wealth of information out there.  First, please don't look on the internet for information as it is outdated and inaccurate in a lot of instances, don't go on YouTube to see peoples videos about surgery and don't read statistics as every one is individual and not a number.  You are you and your situation and your doctors will decide what is best for you.

Mine was rectal cancer and went through all the steps to rid me of cancer, it would be good if you read my "About Me" page above my name if you wanted to learn more or just send me a private message and I'll be more detailed.

I'm here 10 years later so it's possible for great success and they have even improved treatment since then.  Wishing you well.

Kim

suzycruise76's picture
suzycruise76
Posts: 79
Joined: Mar 2019

Kim,I believe your welcome is addressed to the both of us-Alice and Suzy ;-) Thank you for that,and I will read your story as you suggested. There is a lot to learn about this kind of cancer and the ways of fighting and beating it.

Suzy

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I think I've mentioned this on the forum before but just in case I'll mention it again. My friend has a daughter that had cancer at 9 years old. She's now 26, by the way. Anyway, she said that their pediatric oncologist told them to give her Slurpees for nausea. She suggested ti to me but I hadn't had one since I was a teenager and thught it would be too sweet. A couple of weeks later a chemo nurse said the same thing. So I tried it. They helped so much! The experts think it's the ice when I've asked about it. I get orange, grape, or peach. Supposedly root beer helps, too, but yuck.

Jan

Lan53
Posts: 13
Joined: Apr 2019

Hi, I was recently diagnosed with rectal cancer and have been reading the posts, this sounds the same as what I am facing. I receive my treatment plan this week and am very nervous to say the least of what the future holds. I hope some of you may respond as I think this is very informative so far. I have been reading different sites and came upon this one.

Thoughts and prayers for everyone,

Lan

Princey
Posts: 17
Joined: Sep 2018

About working:  My husband was diagnosed in June 2018.  Stage iii.  Rectal cancer.  He has done the chemo, and all the radiation.  He has a CAT scan today to see how things are going and then to schedule surgery.  He is a truck driver.  Local only.  Not over the road.  He hasn't missed a day of work yet through any of the treatments, and as you can imagine, driving a truck is a pretty physical job.  Sitting, bouncing, getting in and out of the truck all day long.  I will say, he doesn't feel fantastic by any stretch of the imagination, but he's slogging through, day after day.  Hope this helps

 

Lan53
Posts: 13
Joined: Apr 2019

Thank you for the info, I was told I could continue my daily work load and have a very good end result. I hope and pray for good results, prayers for your husband.

 

Thank you!

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