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So upset

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

So looking for people to give me more positive stories ! My kidney cancer was T3a NO MO and I had a radical nephrectomy, just had a chest X-ray on a 4mm lung nodule to check for growth ! I had a private message yesterday from a lady saying basically with your pathology report you’ll be lucky if you get 2 years remission ! I’m not sure statistically if this is true but would love some positive stories x

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

My story is very positive, but it is a Stage 1 story so maybe not what you want to hear.

But you must understand that everyone here is afraid of recurrance, even lucky Stage 1s like me.  For that reason we tend to be cautious in our optimism.  Cautious optimism is not pessimism.

Everyone's story is different. Their future is not your future. You are living your own life and meeting your own destiny.

We can only do our best with the situation we find ourselves in.

That's all anyone can do.

Steve.

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

Hi thanks for the reply means a lot x

CRashster's picture
CRashster
Posts: 239
Joined: Mar 2017

She never should have said that. No one can tell you that.

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

Thanks it’s really upset me xx

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

who was this person

What qualifications have they got to tell you this

annie

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

It was a lady on a mcmillan forum ! I know my size and staging make it aggresive etc but to get a private message like that flawed me 

Shecka1121
Posts: 114
Joined: Apr 2015

That is not true.  There are several people with stage 3a with no recurrence.  The chances are greater than stage 1, but it all depends on the location, type, etc, your body.  Noone should ever say that and they are wrong.

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

Thanks for that !! I’m only just getting my head around it all and still getting over the radical nephrectomy its so nice to have some nice replies !!

lobbyist0724's picture
lobbyist0724
Posts: 436
Joined: Sep 2016

Hi Jobie, that is just horrible. The prognosis is not easy to determine as we are all different. Definitely not only by the T stage, which is why sometimes even the specialist doesn't want to tell you the percentage. Since it is based on the statisitcs with patients that are not having the same specifics. Perhaps you can paste the message from the other member here (without the username) and some with similar situation can comment on it.

Wish you a healthy and happy New Year.

P.S. please fill out your "My CSN Space" so we can see more of your experience and we can commet accordingly.

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

Thanks how do I fill in my CSN , sorry so new to this !! 

lobbyist0724's picture
lobbyist0724
Posts: 436
Joined: Sep 2016

There is link on top of the page right under the logo section

"Click here to create or update your member "About Me" page"

Srashedb
Posts: 482
Joined: Dec 2013

who ever felt compelled to send you a private message with a dismal (and unqualified) take on your cancer should be outed. Suspect that it is a hoax and a very sick person.

don’t blame you for being upset but please know that it is unlikely that it’s someone from this forum.

Sarah

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I guess that person hasn't heard about me and a ton of other survivors who view living with cancer as a treatable chronic disease. Maybe she has a miserable life. Maybe she has a chronic disease. Maybe she feels better about herself sending negative vibes. Misery loves company you know. Hang around here. Success loves company too.

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

Thanks for all the lovely messages feel so much better to be speaking to such lovely people x

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hi Jobie. Try not to even entertain that thought or message. The do not know your body and they def are not qualified to say even one word. Welcome!!!!!!!

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

Beware of negative vibes! Stick around.  You will find strong, caring, fun and positive people.  Wishing you a very good 2018

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 206
Joined: Oct 2017

My Dr was very positive about the results-clear margins-no lymphnodes-after a radical nephrectomy- grade 2 and he wants to see me in 6 months-I trust him I hope he's being cautious enough

Bellafelice
Posts: 57
Joined: Sep 2008

I just want to throw my two cents of info in here -I am in Total and Complete agreement with all the other members who told you not to event think about that "persons" comments.You just had a radical nephrectomy and the surgeons reportd  clear margins and no lymph node involvement, etc. All of that sounds super positive to me in terms of prognosis. No one has a crystal ball about what could potentially happen. I asked a top kidney cancer specialist for a prognosis, and he said "I dont give them-whenver I do I am always wrong"-so how  some massage tech could even come up with that is ridiculous in itself and very unprofessional in all ways. Some advice here-keep on moving forward. Follow your doctors advice for future check up and all will be fine. Start the new year wih all good thought and a clean slate! Enjoy every minute.

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

Thanks everyone I feel so much better after all these reads ! A happy and healthy 2018 to you all

Krissyd73's picture
Krissyd73
Posts: 9
Joined: Dec 2017

Kiss

Oh my gosh Jobie, shame on them!!!! I am so sorry they did that.  Everyone is unique and what one may have.... one may not.  I am pretty new to the group and have found everyone to be so kind and positive.   Welcome!!! 

APny's picture
APny
Posts: 1994
Joined: Mar 2014

Personally, I would block that woman. Listen to your doctors, not self-appointed seers of the future. I'm so mad just reading that; what an idiot she must be.

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

Hi APny thanks for your reply  I’ve just read your profil and picked up about lung nodules have you had any growths on them since the scan ?

APny's picture
APny
Posts: 1994
Joined: Mar 2014

Jobie, I just had it CT scanned in November so next follow up is in October, 2018. Hopefully there'll be no growth. Keeping fingers crossed that it's just "normal" nodules like many people get.

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Jobie, I hope this nodule is benign as many other non cancer survivors hav

I personally know someone who was diagnosed as rcc stage four patient 16-17 years ago. He has his ups and downs but he is alive. No one can say such cruel things as that lady said.

Stay positive

Forough

 

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