New here, coming out finally

[Tishanne]

Hi all-
I'm a 51 year old. diagnosed on nov 22 with low rectal cancer. Ct was clear, blood work all normal range . Saw surgeon for ultrasound, he thought T-1, no chemo/rad, local excision and done (who wouldn't have wanted to hear that?) had excision, fast forward one week.
Well turns out he was VERY off. T-3, path show lymphatic/vascular features moderately differentiated.
I am lucky to be in SF and went to ucsf to see dr Alan venook for 2nd opinion who bluntly tells me the guy majorly screwed this up and likely put me at risk by attempting local excision and may have "seeded" the tumor. MRI was done and showed residual tumor left in the sphincter muscle,but nodes looked clear, but no way to know for sure until surgery. Iam being treated now at ucsf and I am about to start 6 rounds of 5 FU chemo followed by APR/permanent colostomy surgery and then more chemo/rad. Getting my port placed tomorrow.

Mourning my life...I am so overwhelmed and anxious. But am faking it for my kids and husband. Just looking for some words of encouragement...right now hard to see coming out the other side of this
Thanks
Tishanne

[stu]

Hi ,
And a big welcome to the forum. How very difficult for you to experience poor surgical care whilst adjusting to a cancer diagnosis. If I am reading this right once you have finished with chemo you will have more surgery then hopefully this current skilled team will enable you to put this behind you for ever. That seems a very real possibility with chemo getting to work then the surgery backing this up.
As you can see from my signature even when the odds are against you it is not always negative in terms of outcome. Your not there , there is a very real chance of this remaining that way.
However that does not deminish the next stage in your treatment which is a very real and difficult process for you to face.

Others will share and care here.
You take care,
Stu

[BeansMama]

Welcome, so sorry you have had to find us but I am so very glad you did. You will find a wealth of support and knowledge here from those of us that are further in our journey.

Getting a second opinion was the best thing you could have done. Make sure your second surgery is performed by a board certified colorectal surgeon. They have more knowledge of that area and will know exactly what to do if something goes the wrong way.

I will add you to my prayer list.

Feel free to reach out / post even if you need to vent and get something off your chest.

[Wonderfullymade]

I am sorry to hear of your ordeal, but glad to hear you are in better hands now! I will also add you to my prayer list!
Wonderfullymade

[fumaros]

Welcome, sadly, but this is a journey, and it is possible to win as you will find out in many of the stories on this forum. I am glad you are in better more capable hands now, it is a lot better than those who don't discover until it is too late that they weren't properly treated. I will be praying for you.

[turtle]

Welcome to the forum. Since I was diagnosed in September as stage IV, I have found that "faking it" and "laughing it off" are the best ways for me to handle my undesirable fate. There are some posts from someone named "Frenchie" on this forum that made me laugh and helped me emotionally. Of course, we can't always control our emotions. Hugs.

[MDK]

Welcome Tishanne. We have a similar story - diagnosed in November 2015 will a low rectal tumor. Referred to a colorectal surgeon - I was given the choice of a local excision or APR. My surgeon thought - after all the scans, pre-surgery radiation/chemo I could do either. Of course I chose the local excision. After that I developed a rectovaginal fistula which required two month healing time before they could then do the APR which was the only way to repair the fistula (that was in June) - fast forward to September 2016 - when my oncologist ordered baseline scans and found a tumor in my liver. No blame - I didn't want a colostomy but I believe my situation was also mishandled. Plus my surgeon although a great surgeon had the personality of a komodo dragon.

I am currently incurable but am responding well to my new Xeloda/Avastin treatment.

I too am mourning my life. And yes, I am faking it for my sons and my husband while the voice inside my head is screaming I DONT WANT TO DIE.

At this point nothing is for certain - my oncologist told me I may live two and a half years, but on the other hand she has had rectal cancer patients who live over ten years. Where do you go with that? I have been told to live one day at a time - I have always been a planner that this much easier said than done.

Prayers.

Take care, post when you feel like it.

Marianne

[Tishanne]

Thank you everyone. I've been flailing around looking for a tether and I feel like I found something to hold on to. Very grateful to have found you all.

Just had my port placed this morning, so onto practical matters...chemo tips anyone??
I find so much information on breast cancer chemo but very little on Crc.

Someone told me to suck on sour candy to save my tastebuds, put lotion gloves and socks on my feet, stay away from anything cold, get magic mouthwash?? and cut my hair before it falls out.
Acupuncture for neuropathy. Does any of that sound familiar? Doing 6 rounds every 2 weeks of 5 fu starting Friday or Monday.

Btw, oncologist is on the committee that sets standards for crc protocol and tells me that study results due out at the end of this month are recommending 6 instead of 12 rounds of chemo. Just in time for me, a small silver lining I guess

[DarknessEmbraced]

How awful that you went through a surgical error like that.*hugs* I hope that your chemo goes well!*hugs*

[DebZ]

Don't cut your hair yet! 5FU and Folfox usually don't effect hair, and I've been on Folfiri and still have hair (a lot less but enough so I'll take it). With so many other changes, still looking like yourself can help a lot emotionally. Candies really help me and peppermints have helped with nausea strangely.

[turtle]

Here's a link to Frenchie's thread that made me giggle and not feel so sad, with jokes posted by other people like Nik Colon and peanut_8: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50374&hilit=Frenchie+grim+reaper&start=120

[Stewsbetty]

If you are only having 5fu I don't think you have to worry about cold sensitivity. it is the oxaliplatin in the Folfox combo that makes you have cold sensitivity. the 5fu can make your hands red, dry and mine tend to feel swollen and pulse a lot. but those symptoms seemed to get stronger around round 7 so you might bypass that.

[hawkowl]

I was diagnosed with a T3N2MX very low rectal tumor 12/2014. Underwent 8 cycles of Neoadjuvant FOLFOX, 28 days of chemoradiation, and APR with permanent colostomy on 8/12/2015. Those first few weeks are the hardest, but this is something you can totally beat.

I am now two years out, retired, living on the beach, traveling the world, and expecting my first grandchild. I have neuropathy and pelvic radiation disease, but I am active and enjoy life. I don't know what awaits me tomorrow, but today is good.

Good luck!

[michelle c]

It is sooo hard at first. I remember being almost paralysed by fear. However, it does get better. Hang in there. This site is amazing, ask anything you like or come here to vent and share your feelings. There will always be someone who understands. Best wishes to you.