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Hi I guess...

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I hate that I am here. I'm a very superstitious (obessisive) person and feel like I am maybe jinxing my father by joining this site, but anyway here I go. 

My 50 year old father finally got in for his first colonoscopy (no symptoms just routine) and was supposedly told they found a small tumor. The reason I say supposedly is that he claims he doesnt remember being told that, and was therefore shocked when the doctor called him back and said it had "abnormal cells" and that he would need to have a CT scan and a foot of his colon removed. He had the CT and was told it looked ok... whatever that means. And now he is waiting for a sigmoidoscopy with the surgical oncologist on 12/21. 

Im beyond devastated and I'm sorry if I seem negative... but I am. I am also scared and worried and frustrated that we aren't getting clear answers... maybe the docs just dont have them yet, I dont know. 

Anyway, I just needed to put this out there. No one in my family wants to talk about it, and its all I want to talk about. 

Has anyone done functional profiling through Dr. Nagourney in California? I want my dad to ask the surgeon about it Monday as it would require a live sample be sent. Its so expensive though but I would do anything if it would help my dad. 

 

Thanks to anyone who managed to read this. 

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

Sorry I can't answer your question about functional profiling cause idk what it even is also sorry about your dad . I to am ocd and my dad has stage 3 maybe 4 we are waiting to find that out now if he might be on lifelong chemo and I know how you feel . Everyone in my family complains its all I talk about and they just want to forget about it even my dad . Also we never seem to get a straight answer from the doctor just yesterday it went from lifelong chemo to the doc changing and saying he might not even need chemo that just makes it harder and this is a second opinion. It's good your here those on this board have helped me so much cause there always willing to listen and talk about it . So welcome to the board and I wish your dad good luck and I will be praying his treatment works . 

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

Isn't it weird how people dont want to talk about it? I mean, I dont even need to talk about the cancer itself, but like, how are people feeling? what are people thinking? I want to just talk talk talk. 

I hate not getting straight answers and its so hard because of COVID , we cant go to the appointments with him. I hate that so much. Of course he doesnt know what questions to ask, hes shocked and scared and this is too much. 

thank you for replying, heres hoping our dads will be happy and healthy for a long time. 

Trubrit's picture
Trubrit
Posts: 5422
Joined: Jan 2013

If your dad is OK with it, and he definitely must make sure his Doctor/Doctor's know you are doing it, have him tape his Doctor's visits.  There is SO MUCH information, it is mind-boggling. 

You can get a nice little dictation tape recorder on Amazon, works like a dream 

Also, it is great to have a notebook, have him write down every single question and concern he has, you have, the guy down the street has. And make sure the Doctor answers every one of them.  It only took one visit with my Oncologist for him to know that there was going to be no in and out with this patient.  He can also write down answers, or just listen to the tape recording, if he goes that route. 

Tru

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

       So weird I am exact same I just like to know whats going on with my dad more information the better then I can try to help . But sometimes it feels like my family is saying i'm not allowed to worry which I know there not saying that just feels like it . Our doctors also tried to do that which really made me angry cause my dad is the same he doesn't know the questions to ask and is still freaked out almost two years later .

          My dad has a colstomy bag and neuropathy so he can't do it on his own so now finally docs realize they have to left one person in with him to help . As far as straight answers literally like my dad has had 3 teams of docs three different places and we still have trouble getting them . It makes me so angry to sometimes though I think the docs simply don't know the answers yet . 

Your welcome and that's the key hope they told my dad he would need lifelong chemo and I shifted right into hope . And asked the doc but if the chemo works amazingly maybe not though right and he smiled and said could happen . So don't lose hope even in those dark moments where it's all there is hope is so powerful . 

 

AnneO1965's picture
AnneO1965
Posts: 179
Joined: May 2019

Hi Mandie, sorry you are here but I'm glad you are fighting for your daddy... Here's an idea... Since you can't go to appts. with your dad, have him call you and put you on speakerphone right after the doctor comes in.  That way you  can hear everything that is said, and the doctor can answer your questions as well.

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

So he said he will call my mom so she can be on speaker for the appointmen. So maybe I'll see if I can be with her at the time. Thanks for the suggestion. And I wish you so much luck. 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Hi,  yes I had my live tumor tested at Nagourney after surgery.  

The one thing to keep in mind is if he has radiation first then surgery you only got a 50/50 shot of testing success on the live tumor due to radiation nuking it.

So if radiation is recommended first then he needs a biopsy of tumor (a certain adequate size) to send.  Call Nagourney and talk with him when you know more about the plan of attack.

A second option would be the Greece Test thru Lexington Natural Health.  Its a CTC blood test, they isolate the cancer cells, grow them and test different natural agents and chemo/chemo combos like FOLFOX / FOLFIRI / 5FU on the cells to tell you what might work best for cancer kill.

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

From what I understand, its surgery first. I dont have numbers but the doc who did the colonoscopy said it was "small".  And his CT looked ok, so im guessing that means to met anywhere. 

My main concern with Nagourney is if it will be worth it... its so expensive and my dads insurance is HMO, so no out network costs are covered. 

That being said, I would live in my car if it meant getting my dad better care. 

Ill have him ask the surgeon about it and then ill follow up with Nagourney. 

So glad to here somone has at least used him. 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

What is the clinical stage?  Do you know?

If surgery first, any talk of mop up chemo?  I would only consider Nagourney based on stage and if chemo after surgery.

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

At least it feels like we know nothing. I assume staging will happen after surgery when they (hopefully, I dont know, we will ask Monday) remove lymph nodes and test them, right? Isnt that how it normally works? 

I am pushing my dad for Nagourney because of the need for the live sample. Its got to be obtained during surgery and like, why try and wait until after the surgey if theres a chance he wont need it? because if he does need chemo, then we alredy missed our chance to get a good sample. 

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Yes, good thinking on your part!!!

Nagourney will send YOU the kit.  It is your responsibility to have appt with the surgeon to let him know what you are doing with the tumor, give THE SURGEON (no one else) the kit "right before" they take your dad back for surgery to send with live tumor to pathology and they will follow the instructions and send it overnight.

My surgeon had never heard of the testing and now offers it to patients who might be a good candidate for the testing.

If the kit goes in the hands of nurses or prep team it culd be lost in the shuffle and it was all for nothing.

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Yes, what Tru said is important.  Record all appts.  Some things he will forget or it will go over his head and could be very important now or later.

I forget half the time to record but getting better at remembering it :)  We live in a one party state so you don't have to have permission but I always ask if its OK to record.  My drs actually like that I am so involved with my treatment/survaillance. 

Trubrit's picture
Trubrit
Posts: 5422
Joined: Jan 2013

I do not believe you will or have jinxed anyhting, so put your mind at rest on that score. 

I have never heard of functional profiling, so I can't be of any help there. 

AS for talking about it, some people like to, some don't; it is there personal choice.  If you want to talk it though, go ahead. The only person's feeling you have to consider, are your father's. If he says no more, then no more it is. If someone else tells you to stop, then tell them you will when you get answers. 

I know Cancer is serious, and we all think we're going to die - some of us do - but sadly, things take time, and the Doctor's don't always have the answers you want, when you want them.  Take staging for instance. That will happen after his surgery, when they get in there and have a good old rummage around, and then send the offending colon parts, including tumour, off for tests.  So, patience is something you will learn, and don't always second guess the Doctor's, unless you feel like they are really being negligent. 

You have found the right place, for the support and information you can only get from folks going through this, either as patients or caregivers. 

Look forward to getting to know you here, on the forum

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

thank you for taking the time to reply. 

I worry that by talking to my dad about it, I'm hurting him, I wish I could make him forget it and just, take care of it for him. Of course if we are talking wishes, then I wish cancer wouldnt even exist so... I guess I better stop wishing. 

You're right about patience. Im gonna have to learn it. 

darcher's picture
darcher
Posts: 298
Joined: Jun 2017

 Of all the forums, chat rooms, etc, this is the last place anyone wants to go. It's great he's got a daughter who's concerned and wants to help and get answers. I know I would have been thrilled to have somone on my side when I was going through the process. 

 From what I know about functional profiling, it trys to isolate the right chemo regiment that will be most effective against the cancer cells. Like finger prints, everyone's cancer is a little different. It shows good promise and seems logical given the vast array of various chemo available to narrow the list to one if possible. There are a couple things I'd like to point out that may give you some releif. For one, if he wasn't displaying symptoms like passing blood, that's a big plus. His age is relatively young so that's also helpful. The fact everyone wants to be silent doesn't mean their uncaring. It's most likely they're afraid and do what a lot of people do which is not say anything. Speaking up shows courage. 

   

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

Can't tell you how sad it makes me to know you felt you didn't have anyone on your side. 

I also can't tell you how happy it makes me that youve given me some relief in terms of his situation. I know things can change but I've just read so much negative stuff that I'm convincing myself of the worst. 

i think my personality is just dialed up to 1000% now, and I'm just not capable of being silent where as everyone else is trying to stay level headed. As much as I'm sad to be here, it seems at least a safe place for me to be myself  

 

np22526
Posts: 6
Joined: Oct 2020

As you have experienced the "google search" results are full of negative news starting with stats. I too was just like you thinking of the worst , loosing sleep and always worried. But finding this forum was the best thing happened to me. So much positive and informed vibes. Caregiver's mental status is perhaps is very important, as it directly impact the person going through the treatment. 

Finally, I completely agree with darcher that people around you do care but to get out of the truma of word "cancer" takes a while. Fear of unknown is the worst and "temporarily" shadows  all the other emotions, snd is why people don't like to talk about it.

Good luck with your father.

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

One of my biggest concerns is stressing my dad out. I want to make sure he's ok... that he doesn't feel alone or scared or stressed. But I'm also afraid to bother him, my energy is just not great at the moment so I'm worried that by checking in with him I'll just make him worse. Such an odd position. 

Its so odd because I get how everyone is just, shocked and therefor silent, but to me it illicita the opposite response. I'm afraid of the unknow, so I'm trying to know about it, to gather info and formulate plans. Guess it takes all kinds to make the world turn...

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

That's what I been trying to do spent most of the night trying to gather info and formulate plans on my dad's situation . Making all those plans and info is good but I also get so obsessed doing it sometimes I feel like I am missing out on loving and supporting my dad and spending time with him . So be sure to find a balance which I really struggle with cause at the end of the day god is in control not us god will take care of both our dads . 

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I know. I feel we are in a worse position than what my dad realize so that's why I am trying to know what all the next steps could be... but I can't even share it with him because I don't want to worry him.

My mom just told me that they don't want me to spending the money to do the functional profiling and I'm so upset and devastated. I think they are underestimating the seriousness and my dad will suffer for that. 

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

It's so weird cause honestly my dad seems to be handling better then me I get what you mean . Even now he seems to just accepted lifelong chemo as if it's good or something . I want to get a 2nd opinion from a national cancer center but I don't even want to mention it to him cause he seems all most at peace with it which is very confusing to me . 

I have experienced this to not the exact same but like I feel everyday my family isn't taking things serious enough . I know my family loves my dad and I am sure your mom loves your dad . But it seems like some people are to scared to admit how bad cancer really is . So they downplay to keep that fear they feel under control it's a way to cope with it . A very different way then ours which is why it's frustrating to us . 

I'm not sure I'm even right about that it's been all most two years and I struggle with all this still I just wanted you to know your not alone . There are others out there like us who obsess over this and handle it different then the majority of people seem to . 

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

We do indeed have a lot in common. I think you summed up how we respond and why its frustrating us well. 

There is something to be said for, taking it one day at a time. I mean, we could get hit by a car tomorrow and gone. Happens all the time. So it makes sense that even if we get the worst prognosis to just, try and be in the moment you know? I mean, I am saying all that but its hard to FEEL it. Like you, I want to, find the answers, formulate a plan, have solutions for all possible outcomes, etc...

Im here for you if you want to message me or something. So many people here have such valuable insight, which I cant offer. But they do say that birds of a feather should flock together. Worried children must unite :)

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

        Your right I feel like being in the moment day by day is the biggest part of fighting cancer and it is easy to say hard to do . We'll get better at it for our dads we have to so we will at this moment I am struggling with it . My dad's having trouble leaking blood from his " man part " and he has a uristomy bag so I am freaking out like what is going on . I sure didn't have no plan for any of that but my dad needs me to be calm and strong so I called the doc and we wait .

Same to you message me anytime it's different kind of pain for us then the rest of the heroic survivors and unite we shall and one day this will be behind our dads and us . Worried children must unite that made me smile I needed that thank you :) 

MandiePandie's picture
MandiePandie
Posts: 76
Joined: Dec 2020

I appreciate any luck you may be wishing, so thank you. 

The last thing I want is to stress my dad out... I want to be close to him but I feel I am in like, attack mode now, so I am trying not to bother him. I just hope he knows how much I care. 

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