New to posting and freaked out, need advice!

[Jenjb]

Hello! I have been visiting this site for advice since I was diagnosed in January, 2014 with Rectal Cancer. I need some support and advice for others. My background is I am a 45 yo female, with a 10'year old daughter, who went to GI doc with bloody stools early January, no other symptoms. I had a colonoscopy and he biopsied and found I did have cancer in my low rectum. It was staged at IIb at the time. Did the usual 28 daily radiation treatments with a 24x7 5FU pump. I also am enrolled in a clinical study for stage 2 and 3 patients to get Zaltrap to see if effects prognosis. I had bad side effects with the 5FU and Zaltrap, super high blood pressure, abdominal infection, and mouth sires so they took me off of the 5FU about 2 weeks earlier than anticipated. Zaltrap was completed as per study.

My surgeon, who I love performed my lower anterior with j pouch on May 14th, 9 lymph nodes removed and 2 tested positive, so I was moved to stage IIIb, which really was a mental blow to me....my tumor was really close to the sphincter so it was a game day decision if I would have a temp or perm ileostomy.....and I got the temp. When the path came back it said the lower donut (sure I am getting terms wrong) had trace cancer...but my surgeon felt comfortable he got it all.

Yesterday, I had my reversal surgery and it went great...so far recovery has been easy. But now I am totally freaked out, surgeon said he felt a small bump near my staple and is having it biopsied to make sure it is not cancer. It has only been 6 weeks since my surgery.....could cancer be back that quickly?.. Is it scar tissue? I am working myself into a frenzy...has anyone else had this? And if it is cancer what does that mean?? Any help or advice is greatly appreciated!

Jenjbracey

[Rheaeliza]

Jen,

Before my reversal surgery a scan showed I had narrowing near the anastomosis. So the gastroenterologist went to do a balloon dilation proceedure to widen the area so I wouldn't get a blockage when reversed. I woke up from the proceedure with my gastro doc looking very worried. She said she had found a lot if "abnormal" tissue that looked like cancer. I was devistated. She took a bunch of biopsies. Meanwhile my surgeon talked me out of a panic saying reccurence usually doesn't happen like that, and to try to relax and wait for biopsy results. Well he was right! All samples came back benign! I just have some tissue/mucosa there probably due to prior infections, trauma, who knows.

So while recurrence can happen quickly and locally, it USUALLY doesn't. Try to relax, breath, take some Ativan!

Here I am 5 months post reversal and doing great. Pretty normal bowel function, I eat what I want, and remain NED (though my next scans are in 2 weeks so I'm a bit nervous)

[justin case]

After surgery, my GI detected a small bump and sent it to his beloved diagnostic team. It was benign, but the bill from that was extensive. You probably had some staples and scars from the radiation, and I hope that is the case. Only time will tell, but we all suffer from lack of information sometimes. Freaking out does absolutely no good, and may be pointless at this time.
Regards,
Michael

[exaussie]

Freaking out is pointless.. We have learned if it's cancer you have deal with it and if it's not no worries... Sounds simple but easily said than done for sure.

[Jenjb]

Well it came back positive for cancer. I am kind of shell shocked! It has only been 6 weeks. He said it was the size of his fingertip. He is going to talk to my radiologist about whether or not radiology would help with chemo, or do I have to get everything removed with a perm colostomy. He will give me options next week. Part of me just wants to get it removed and gone from my body! Not sure what right path is. Also do I get a second opinion?

[justin case]

second opinion, I would not put trust in this surgeon, without it.
Michael

[Bev G]

First, welcome to the Board, which of course no one wants a reason to join.

Second, the size of a fingertip? That seems extraordinary. I would run, not walk, for a second opinion at a major cancer facility if at all possible. I am wondering if that was left from the original surgery. Besides being major sucknitude, something seems very wrong (ie illogical) about this.

We're here for you. Please keep us posted.

In the meantime, remember to B-R-E-A-T-H-E, and repeat often and slowly.

Hugs to you,

Bev

[Val*pal]

Welcome to the board. I'm so sorry you are going through this. You are in my thoughts. This group can be a wonderful support system for you, so please make use of it.

I would second (or third) the suggestion to get a second opinion. And as Bev mentioned, get it at a major cancer treatment center. There are always new ideas and treatments out there that don't filter down to the general oncologists for a while, so make sure your case is being looked at by teams of experts.

Many ((hugs)).

Val

[Jenjb]

Thanks for the support and advice.....I do think it was left from the original surgery....I think he was trying to save my sphincter and he got as close as he could....and it wasn't enough. So now I feel like I went through two surgeries and am going to end up basically starting over in such a short period. How do you tell your doctor you are getting a second opinion! How do you choose who to go too? I am usually very positive and upbeat..but this threw me for a loop! Thanks again for support! So appreciated!

[Peabody5422]

Hang in there. This is such a journey. Take the advice and go for a 2nd opinion even thou it may be the same that you received at 1st. There is always hope.

Hugs for you and your daughter.

[teacher49]

Jen, So sorry to hear of recent complication. My situation was very similar to yours. Very low rectal lesion. My surgeon had a serious talk with me. He said he had 1-2 cm to work with but if those 2 cm included cutting into the levator ani muscle then the outcome might not be very good......as far as control of sphincter and I might need diapers the rest of my life.

He looked at me and asked me what my choice was.......and I just said that I'd like to still be here in 5 years. So he then said, he would make the decision once he began the surgery.

Well I had APR and perm colostomy. If that is the next step for you.....it is not the end of the world. Yes, your plumbing is rearranged BUTT so what. My best friend really gave me hell when I cried over the possibility of colostomy. She said, Most people don't wake up every morning and think "boy I sure am glad I still have my XXXhole" Her mother died of breast cancer so she told me to get over it. I did. I work full time teaching, standing in front of students,and sometimes I have to sit in long meetings with administration....and If I didn't have a colostomy, I'd be running for a bathroom all the time.

Take care, I know what you are going through.

[sailbd]

Hey Jen:
You inquired how to pick another surgeon, and Bev nailed it. You should seek a second opinion from a major/nci cancer center. Reading this board over the years, you'll note some familiar names - Hopkins, Sloan, MD Anderson, etc. - for a reason. Your current surgeon will not care that you seek a second opinion, and if he does, you shouldn't continue treating with him - it's pretty common practice and we're talking about life and death. Dr. Jonathan Efron is a well known and highly respected surgical oncologist specializing in rectal surgery at Hopkins. If you search his name on this board, you'll probably find some positive feed back and experiences. I wish you luck - please remember that you have to be your own best advocate - don't be shy or worry about hurting peoples feelings in demanding the best care from any provider or medical facility. Bob

[lauragb]

I don't know where you are located but Cleveland Clinic is also tops in colorectal surgery. They are known for fixing other's mistakes.
Don't worry about how to tell your surgeon you're getting a second opinion, you can ask office staff to send records or go to medical records yourself and get them. Many places you can do this online but I also like to carry mine with you.
Something isn't right about this.

Keep us posted.

[Rotorhead]

Doctors get asked for second opinions all the time; they expect it and they don't take it personally. If they do (mine did not, I don't know of any that did either) then they are suck-a$$ doctors anyway. Really, second opinions are part and parcel of oncology, not unusual at all.

Like other folks said - do your homework, get in with a well-known onc/clinic, bring all your records...and breathe. Do not be afraid to ask your GP for some anti-anxiety meds if you find yourself really struggling.

Good luck
-RH

[Jenjb]

Thank you all for the support and advise. We contacted John Hopkins today to get a second opinion. It will either confirm the plan or give me more options!

Still in hospital since Wednesday's reversal. Had to get a blood transfusion today because of all the blood I was losing out of my bottom...so that means I probably won't go home tomorrow either! No bm yet.....just blood!