Not looking good for me

[Delinda2]

Home from the sigmoidoscopy & meeting the new certified colorectal surgeon. Wow. Very different than the conversation I had with my onc. (My original onc moved on & this one is very young, only seen her three times.) Onc NEVER MENTIONED "many small nodules in the rectouterine space" or "new nodularity in the presacral region." I think she's avoiding an uncomfortable conversation. Apparently it doesn't matter if this is a new primary or a metastasis because that whole area seems to be filling up with cancer. The surgeon talked about several different things that could happen & we didn't like any of them. At least she was honest in a positive way. The surgeon, onc, and radiological onc meet today at 1:00 to discuss a plan, then will call me. Definitely plan on telling onc that if we are going to continue working together, she is going to have to give me the real deal. Shook my confidence in her- and I swear she's 12 years old. (You know that old joke about doctors & cops looking like children the older you get. ) Feeling rather screwed right now. Hells bells, cancer sucks.

[DarknessEmbraced]

I'm so sorry!*hugs* I'm glad the surgeon was honest. I hope you don't have to wait long to find out their plan.

[dianetavegia]

I had to look up much of your terminology. Wow, this is not great news but maybe they can do a very aggressive surgery and get rid of much of this.

One thing I saw that you mentioned from the start was perineural invasion: Perineural invasion is an important mechanism for local spread in certain malignant cutaneous neoplasms and is associated with aggressive tumor growth, increased frequency of recurrence, and increased morbidity and mortality. Thus, perineural invasion is often used both as a marker of malignancy and an indicator of aggressive behavior.

I would think your original surgeon and onc should have warned you that this invasion was a strong indicator that you would have a recurrence and possibly watch you twice as often.

We're almost the same age. My heart hurts for you. I do hope you can find some type of treatment.

Diane

[midlifemom]

So sorry to hear your crappy news.
You're right, cancer sucks - big time!

[CRguy]

Sucknitude sista' ....
I agree ... set the Onc straight on the terms of engagement with you
and keep fightin' the good fight

Sending you MEGA HARMONY D2

With you in spirit my friend
CRguy

[Cowgirl918]

Honesty from your doctor is important but they are often trained to only respond to what is asked in the case of cancer. Some people are in shock and others don't want to know. Not saying this was the case at all, but am suggesting that you write down your questions before next visit and end each session with "Have you told me everything?" If you want the details you often have to push. I am so sorry for this news. Thinking of you with good thoughts for better days.

[lpas]

[Nik Colon]

Hugs

[ANDRETEXAS]

Prayers and good wishes to you....Hoping your team finds a successful plan to fight this damn disease. Stay strong and try to stay positive. Those are two things cancer is counting on you not having. Andre

[canadiandaughter]

Sorry to hear this Delinda. That is not fair that your doctor did not share info with you. You have a right to know everything that is going on. I pray that the team can put their heads together and come up with a positive plan for you!! Hugs!!!

[ktwmn]

I often find my onc often tunes me out because I am not a MD, even if I am citing valid things based on research in medical journals. He is expecting a battle with me and he has already made up his mind what should be done.

Also, one thing I have to remind myself is that a general oncologist pretty much follows protocol. I may be up on the latest immunotherapy trials for crc but he may not be and/or has dismissed them because they are considered experimental.

And yes, I suppose they have programmed ways of responding to patients. I have also seen my onc cry a few times when giving me bad news (which has made me feel worse about my situation. And ironically I am made to feel bad if I show disappointment "You must not give up blah blah blah" after being told all that can be done is palliative). That being said it must be very difficult to practice in the field of oncology because every day there is dismal news.

Like you, I want to hear the truth. I will need a few days to get over the shock and disappointment but then I will prepare for the next battle. Knowledge is power.

[Petit83]

Dear Delinda2,

I'm sorry for what you are going through. I also believe that many oncologist, especially general oncologists, follow a protocol and they have many programmed answers. We weren't always told everything so I tried to get the report before the consultation with and then have all my questions or I would email them later.

Regarding your confidence in your oncologist, maybe you can try this. When we didn't feel really confident about our oncologist, we asked him directly whom he wound recomend for us to get a second opinion. He sent us a more knowledgeable Doctor in my opinion. After that, both doctors worked on my mom's case. You might find pros and cons (especially when they disagree) but for us it was good to have them both.

[chrissyrice]

Hi Delinda,
Did your medical team get back to you yet with any plan for treatment?

Please know we are hoping and here for you.

Chrissy

[NZJay]

Thinking of you, Delinda. I'm gutted for your shitty news. Please let us know what treatment options are being tabled, when you get a chance

[mariane]

Delinda,I would push for surgery. There is always a chance for cure or at least adding time for a new treatment. It could be surgery in any combination : chemo to shrink tumors than surgery than chemo again or if surgery is possible now surgery and than chemo. Anyway if your oncologist suggest chemo for life I would try to find an aggressive one. Sending hugs and prayers,