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Second, third or tenth opinions

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

OK, I understand why I didn't get any hardy "welcome to the board" or "glad you found us" greetings when I posted here back in January. I'm OK with that after all, I was questioning the very make-up of the community here. Like Greg said no one forgoes treatment. I basically got the answers I expected. I only meant conventional treatment. I have taken every measure in my power to become healthy in mind and body omiting everything from my life and diet even remotely considered unhealthy. I've lost fifteen pounds in two months, have more energy and feel better than I have in MANY years. I don't get headaches or other aches and pains anymore and my vitals are perfect. So, moving on, after another month of tests I have another question that someone might have an opinion on. To update, I was diagnosed back in November with stage2 T3 rectal cancer 1 cm from dentate line. In the following months I have been through the ringer with tests and here is the bottom line. They thought I had an issue on my liver. That was negative. I had a PET scan to check "swolen" lymph nodes. The PET scan showed no (new)organ involvement but my entire lymphatic system lit up like a christmas tree. They thought it might be a dual malignancy (lymphoma seperate from RC). Surgery and biopsy of removed node in groin showed no signs of cancer.(Dr. says we'll just have to keep an eye on them). So 3 months later I'm still stage 2 T3. Here's the question. I am involved with the local cancer treatment center here in Ohio and they are very well known. Everyone involved with my case agrees on the same course. Chemo and radiation for six weeks, six weeks off followed by surgery followed by more chemo for undetermined duration. They really gave me no other options. When I asked about other treatment options they say I can chose any treatment I want but this is the preffered course. They even presented my case at a "tumor board" for consideration and the consensus was the same. Why then do I hear about similar cancers, on discussion forums, all being treated differently. Is this the most recent trend in early stage cancers? Also, the Chemo they recomend is Xeloda-800mg.twice daily with radiation 7 days a week. The only info I have found on Xeloda is treatment of breast cancer and metastic colon cancer. Neither of which I have... Any input is appreciated.

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

My oncs encourage me to get 2nd opinions. they suggested an option that the cancer panel thought was good, I went to the recommended radiologist and he couldn't convince me that what they suggested was valid. while my treating hospital for colon surgery, ileostomy and chemo has been fine, I am underwhelmed at their approach to my case. I've had to shake the trees myself, and so will you.

On to a new hospital, lots of meet and greets, no substantial "plan" or recommended course of action.

I think you should set your expectation that it will be a maze and a frustrating venture to get opinions. But do it. Now, I'm not clear on the differences between colon and rectal cancer, as far as the different chemo cocktails. I would reach out here and maybe other boards to find out the top cancer centers/oncs in your geography or the geography you are willing to travel to, then research them and pick one or 2 to get consults/opinions.

I was hoping that my 2nd opinions would validate the 1sts, they didn't. But I am in a good place right now and am getting a liver resection next week at Sloan Kettering, a premier cancer hospital.

I probably didn't answer your questions directly but Yes, opinions vary greatlyf rom dr. to dr./team to team. They know what they know or are comfortable with. So when you get on a mb like this one, we all have different treatments and chemo combos ans surgeries.

Don't give up, just put your detective hat on...it's tiring and frustrating but learning all you can, being practical, and networking with anyone that may have a connection is what has helped me get to my next life-extending steps.

Best of Luck

Peggy

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm sorry if you felt you weren't properly welcomed when you first came on the board. Where were our manners?

I can't tell you what to do, but I personally would do what is being recommended. Good luck with your decision making.

*hugs*
Gail

lcarper2
Posts: 638
Joined: Dec 2009

I had cc 34 nodes removed 19 cancerous been on 3000 mg Xeloda 14 days on and off 7 since July end march 25th. I have had min. side effects nothing like infusion I to would do what the doctors are recommending they know more that we do and have your best intrest at heart , they want you to beat this...

Jaylo969
Posts: 827
Joined: Jan 2010

Just wanted to say welcome. I am new here too..joined up the end of January. I wouldn't want to speculate too much on what your doctors are looking at because truthfully I still have a lot to learn. I am stage II colon cancer. Had 16 1/2 inches of ascending colon removed and a resection. The first regimen my oncologist chose for me was Folfox and I made it through 5 treatments and she stopped it. I was becoming crippled...hands, legs, & feet. So, she then took me off of that treatment and put me on Xeloda....3,3000 mgs day.I am in my first cycle of the Xeloda and it is a piece of cake compared to Folfox....in particular the oxi which I couldn't seem to tolerate.So, I have no mets or breast cancer, and I am taking Xeloda.

My oncologist told me from the beginning that there is a grey area with stage II.They aren't sure how much chemo might help or benefit us.She gave me a choice..to have chemo or not and she said she'd be ok with either way I chose. I chose to do the chemo because I have 2 good friends who have been RN's for over 30 yrs each. They both related to me how they had seen stage II with no chemo come back with a vengeance.I trusted those 2 enough to take their words to heart.

A second opinion on treatment choices might be a very good idea as the other poster mentioned. If nothing else they should explain to you in better detail why they want to do what they are suggesting be done....for your own peace of mind. I know each case is different and each patient is different and a lot of things are taken into consideration.

Anyway, I hope you do well with whatever treatment you decide on.I've done so much better than I thought I would.

And again welcome! I'm glad you are here.

Best wishes,
-Pat

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Welcome! I know nothing about your "welcome" to this board, but as in anything internet related, my belief is that you have to remember it is the internet and it can seem impersonal. But I do believe the members of this board are caring, encouraging and all fighting this beast. I do not try to analyze why some posts are well responded and others are not.

I do know, a "standard" of care for this cancer does not exist. Everyone has their own protocol and I do believe other cancer centers are more aggressive than others and have more treatment "options" than others. Here on the west coast, for example, HIPEC is only done by a small handful of doctors. Whereas, it seems this procedure is more widely used in the east coast.

I would certainly get as many opinions as you can and pick the team you feel is best for you.

Good luck on your journey and I think you will find this board to be a big support (at least it is for me).

Marie

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I'm sorry for a lukewarm welcome to the board. I still wasn't 'back' from a rough time, but I'm sure everyone here wants you to feel welcome to post.

I really believe in opinions. I understand you are probably at a major cancer center and that is really important. But, if you aren't getting answers you are comfort with and a radiation onc can't convince you that the treatment recommended is valid, it sounds like it's time for a second opinion. Like you said, second, third or tenth.

I am also in Ohio but I go to U of Mich for treatment. I'm stage IV and my team gave me the right answers (for me) and have continued to. When there weren't any more treatment options for me, they made some up!

You need to be confident with your team and your treatment. Go somewhere else. You took your time to get healthy before treatment, now choose well. You won't regret it. (Yes, it’s a pita)

Good luck to you.

Outwit. Outplay. Outlast.

Kimby

Lovekitties's picture
Lovekitties
Posts: 3343
Joined: Jan 2010

I like you am new member of the group and too early in the process to offer any medical advice, but do believe you will find this a warm, caring, and informative place to learn.

I am a firm beleiver that if you aren't comfortable with the options/opinions/plans of your medical team you need to search for another. There is no right answer on how to beat Cancer, regardless of type, but you must have confidence in the med team and feel you have a good working relationship with them.

Remember that doctors of the same team or group will most likely have the same opinion regarding options or treatments. After all that is what makes them a team. You will need to search another hospital or cancer center to potentially hear about other plans.

There is no 'sure thing' in Cancer treatment, but whatever you do select you have to have the upmost faith that it is right for you personally.

Best of luck and keep posting to let us know how things go for you.

Marie

Mchapp's picture
Mchapp
Posts: 96
Joined: Jul 2009

I am not sure where you are located in Ohio - but there are some great hospitals - Ohio U, Clevland Clinic are top rated. I am near the Ohio boarder - I go to Allegheny in Pittsburgh - and have an incredible team! I would be happy to give you my team! I am a stage ll colon cancer patient - and only have 1 more treatment to go! My case has been presented at many tumor boards in the state of PA...my case was very weird from the get go...negitive labs, negitive colonoscopy, negitive Pet CT...thought it was diverticulitis...NOT! It was a stage 4 turmor - 93 lymph nodes - all negitive, no other mets!
I did Xeloda with radiation - and have tolerated all 11 treatments - as best I can. Oxilaplitin was obmitted after treatment #9...
Good luck with your plan and we are here for you!
Michelle

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hi. I don't remember your post from Jan, and I'm truly sorry about that. I was new in Jan as well, and my brain was in full chemo meltdown. I searched for it but still can't find your Jan post. I'm very curious about your "questioning the very make-up of the community here."

It's inspiring to hear of the general success you have had with your nutritional plan. It's only logical to think that you are also putting your body in a better state to fight whatever form of cancer you have. It's different for each of us. I am also equally inspired by folks who are in the process of fighting the beast with positive thoughts, humor, prayer or whatever it is that works for them. As my friend Kerry said a while back, you've got to believe in your plan.

I'm wondering why your onc doesn't have you on FOLFOX? Oxi side effects sucks, but it typically sucks worse for cancer cells. Is it because you are Stage 2?

One thing I have learned is that there is no one way to treat this disease. There are standard treatments but the reality is that each of us has a different biology and therefor will have a different biological reaction to treatment - both in terms of how the cancer reacts and side effects. The key, again, is to believe in your plan. That's why 2nd, 3rd and 10th opinion are so important. They either lead us to another path that we believe in, or they give us the assurance that we already have the right plan. My onc encouraged me to get 2nd opinions both at the beginning and recently after I completed 12 FOLFOX treatments. My visit to Duke at the beginning of treatment, and last week at Sloan both confirmed for me that I was in the right place with the right doctors. My case went before the tumor board here at Wake Forest. The consensus was more chemo. However the surgeon did not concur with the board and we are considering surgery. You said that everyone involved with your case is in agreement. I'd want confirmation on that.

I think that no matter what stage you are, you want to be as aggressive as possible. It doesn't sound like you believe in your plan yet. Get more opinions. I've seen Ohio plates in the parking deck at the Wake cancer center.

Take care. Let us know what you decide and how you are doing.

Roger

mom_2_3
Posts: 965
Joined: Nov 2008

Here is the link to the original post in case anyone wanted more background...

http://csn.cancer.org/node/184128

To my knowledge most people I have met online that have rectal cancer and are staged at Stage 2 or Stage 3 typically have Xeloda/Radiation prior to surgery. I believe it is the standard of care.

All the best to you,
Amy

dasspears
Posts: 233
Joined: Feb 2009

I was diagnosed with Stage I and a resectable tumor but did not get clear margins. Based upon that, my surgeon recommended following a protocol called the Nigro protocol (for anal cancer) or I could forgo treatment. Due to the unclear margins and the fact there could be rogue cancer cells, I chose the recommended treatment. It consisted of 1 week of 5Fu and cisplatin, 6 weeks of radiation with the final week combined with 5 Fu and cisplatin again. I chose the traditional treatment - I was comfortable with the risks and the outcome. I read the statistics and while I think untraditional medicine has many benefits, I felt most comfortable with what had been proven to work. I really didn't feel like taking chances. So that's my story.

This is an awesome group - I'm not an active poster - I tend to read and lurk. It is very unusual that anyone would disregard your post but if so, please know that they will all welcome you with open arms. This is the best group of people I could possibly recommend.

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Well, I didn't mean to imply I was treated unfairly or the response was uncaring, I was just making an observation. I know the subject of voluntarily postponing treatment must have seemed like a crazy, if not down right stupid, concept to many who only wished their treatment could have started earlier. I was just curious how people might reflect on the begining of their own treatments. As it would happen that choice was made for me when more tests turned into another six weeks. I must admit, I sometimes find it hard reading these posts where conventional treatment has failed someones expectations and when I posted here (back in Jan.) it was a bad (and sad) week for the board and for me to start reading here. Anyway, I really appreciate the feedback AND advise and I will try to contribute where I can.
Best wishes to all...

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