I was diagnosed two days ago. Confused and scared.

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How did you survive the diagnosis?

  • Welcome Marigol...you're safe here with us. Very friendly group. The fear is really the unknown. Mine was found by accident, my profile gives the story. Once u get more knowledge from your medical team you settle into a routine of maybe surveillance or treatment. We all still have good and bad days but know we have people on here going through similar journeys. Support is always here for u.

    Ask any questions, rant laugh, cry..what ever ..

    Hugs

  • Hi Fleabane,

    thank you. It is a little better now since I got used to the thought. 
    I would like to know what is the easiest solution: to have operation or not. I am 71+ and can't imagine myself to recover with a major cut on my side. 
    Still waiting for consultation, who knows what are they recommend to start with.

    Anyway, it is good to know that you guys are here to help and support!

    Wish you all the best and thank you!!Slight smileArrow up down️

  • Marigol, the incision isn't necessarily a huge cut on your side. Unless of course they've already indicated that. But often it is keyhole, so several small holes and one 4-6 cm one which isn't huge. It very much depends on all kind of variables, such as size of lesion, location of lesion, plus other variables. 

    You will have a much clearer idea of your options and the paths they can offer you, once you have that consultation.Hugging

  • Hiya Marigol.. I actually had the op...it was done by robot and apart from a few days of controllable pain. My scar is only 5cm long and healed quickly.

    My main problem was getting tired easily, but I prepped well and have learned to take things steady.

    You will hear tales from others who took longer to heal, but remember your body is totally different than anyone else so font become frightened

    Trust your medical team, ask the questions u need. What ever decision u make your team will support u . I have 3 phone numbers of my team who are there if I have concern 

    Let me know how u go on and always here if u need support

    Hugest hugs

  • I'm waiting for my consultation in another town.finally have a date.ill let u know how it goes.

    Mine was found after having a double mastectomy at different times.this so and so was found 8 years ago and was monitored.

    I think they wanted to biopsy it to see what sort it was and if from breast cancer.turns out it was a kidney so and so.

    Anyway do excuse my terminology because I deal with it this way.unwelcome visitors I'd quite happily want them to do one.

    Kind regards to u and everyone on here on their journeys.

  • You are very strong and wonderful, honestly.

    Words are not enough here.

    All the best, I'll let you know if I have my consultation and the information I get.

    Innocent

  • Wow! Op by robot? 
    Anyway, you are lucky with your medical team, I do not have any at the moment.

    But called yesterday the general Mac line and had a nice chat with a lady.

    You see, I still have no symptoms, feel more or less well, my question is how long could l

    survive this diagnosis , if nothing happens. No op, no chemo, no nothing.

    And how long would I survive, if the procedure of get rid of the lesion stars, op, heavy drugs, and the lot.

    If the answer is let say 6 months = 6 months, what would be the right way.

    I hope, you understand this confused hesitation.

    Thanks for your time, all the best!Sweat

    hug, Marigold

  • The confusion is u are getting ahead of yourself sweety.

    My path,

    no symptoms found by scan after heart attack

    Later renal consultant said we need to operate

    3 months later op

    Immunotherapy offered, but I couldn't have

    6 months later found elsewhere but so very tiny they are just scanning every 3 months to see growth rate

    Ordinary kidney cancer is very slow growing and my secondaries are KIDNEY CANCER CELLS...but in other parts of my body. So slow growing 

    The main thing here is to take each day, each appointment as it comes. Don't read all the rubbish on line. We are individuals, each body works differently.

    Let ur medical team form a plan, they will do their tests and give u a way forward. 

    No one can give u a time limit. My consultant told me it could be decades of prolonged life. So basically all I can say is stop getting confused, stop reading statistics of life expectancy. 

    Trust me..wait for your medical people to give u the information and u can make a devision then

    I do hope this helps a little, we were all where ur are now, floundering and frightening ourselves.

    A day at a time sweetie

    Hugs  

  • This robotic thing seems to be the modern way. They say recovery is even quicker than with laparoscopic (though as it's so similar in theory, I don't really understand that bit). My neighbour who had a traditional hysterectomy 40 years ago, when I told her that my kidney surgery was robotic, pulled a face and said implied she wouldn't fancy that!!! but my gynae surgeon told me at a follow up that he too had started doing almost all his surgeries robotically about 6 months after I had my laparoscopic surgery.

    It's very safe though. The surgeon sits at a console, you have all the nurses, anaesthetists etc close around you for the normal parts, and the "hands" of the robot are much smaller than the big fingers of the surgeon! so can undertake very intricate movements much easier. 

    I can't remember without checking older posts, if yours is a kidney lesion or if there are other issues too? If it's a lesion, they tend to be slow growing. I think it's an average of 2.4cms a year (which actually isn't a lot) but can be as little as 6mm per year. Mine was monitored for two years with absolutely no variances on the scans, although when it came out it was 6mm bigger than all the scans had shown. 

    The surgery is actually the easy bit in a way, because once it's out, it's out. I totally get how you feel, because I have been through this with two surgeries now - the first, no question, my womb had to come out. With my kidney, discovered when scanning for my womb, it was deemed advisable to wait until fully healed from one before having my kidney done. And the longer it went on, the more reasons/excuses I found to postpone it, especially as every six-month scan was showing no change. I am 64. I could have left it another five years and then had to have all my kidney out instead of just an inch or so of it. Or I could have waited ten years, started to get bleeding, pain in my side, other symptoms, and found that it had gone so far that it would have spread into other areas and I would be facing in my early 70s a lot of chemo and potentially a terminal diagnosis. Obviously everyone is different, but it seemed that this was the risk and I had to make my own decision over how much and how long I wanted to continue to hang around. The other complication was that my surgeon didn't want to do a biopsy. So there was a 10-15% chance that mine could have been non-malignant. But having already had one cancer, I decided there was a high chance it would come in the 85-90% chance of being malignant - which it was in the end.

    I can honestly say that having this done finally (partial nephrectomy) was the best thing  I could have done! The sheer relief I felt and feel, once it was out, is indescribable. I had it hanging over me for two years, knowing in my heart it would eventually have to be done, and wondering constantly how much more I could afford to kick the can down the road without risking severe outcomes in the middle to long term. It was in the back of my mind every time I went on holiday, every Christmas, every fun thing I did, that there was something inside me that shouldn't be and I was effectively gambling with that Something...plus the more scans you have, the more radiation is going into you, although 3 or 4 scans isn't a drastic increase but I knew I couldn't continue having twice-yearly scans for years. 

    Mine was a very early stage and I don't apparently need any chemo or further treatment of any kind, so I have been very, very fortunate. I found out by sheer chance, early, so again have been very fortunate. I had no symptoms. 

    It has to be your own decision of course. Even the medics won't push you, but can only advise, giving you the full picture as far as they can see it. 

    So try not to second-guess too much until you actually speak with a consultant, medical team, whoever is assigned to you. I completely understand your fears, believe me. I am only looking at this now from the angle of someone who has come out the other side. I was very much in the same quandary as you, for most of the two years since I was told what was on my scan! 

    Sending you hugs HuggingHugging

  • Thank you Maite,

    my lesion by the first CT with contrast is " very large irregular mass of lesion".

    Does not sound good at all. I honestly hope, they do not want to operate, only the other  methods.

    I still don't have symptoms, very little wondering pain on my left side.

    Anyway, I decided to help my immune system, will do again Nutri juices, force my appetite, and move a bit more. You can smile how naive I am, but I believe if " big pharma" would go after to boost people immune system, instead to go after the 800 different cancer with heavy chemicals we would have much more success.

    Have a lovely day Maite and take care!

    hugs, Marigold