Adjuvant Chemotherapy

Hi Leigh, good news about your CT scan results. Sorry to hear that you are in conflict with your doctor regarding the chemo issues.

From reading your posts you are far from a lost cause! Please don't think like that. You come across as extremely capable and strong and have every right to express your concerns with your doctor.

Leigh, I wish you well and encourage you to remain positive and strong to get you through these difficult times. I sincerely hope you get the outcome you want.

Maria xx

Leigh, as I read your (admittedly disappointing) post, what struck me more than the words was the intelligence and integrity and courage behind them. I wish I had an answer worthy of your questions, but I'm sure someone more knowledgeable than I am will chime in soon. I really don't understand why you aren't being offered chemo or what the protocol is in Holland, but I'm going to assume that you are going to talk with other doctors about your situation.

What I do know, without a doubt, is that you are exactly the kind of person that can beat this thing. You are extremely bright, articulate, and have an extraordinary attitude. I tip my hat to you, sir.

I'm going to write some more on this tomorrow after I've given it some thought. In the meantime, you have my best wishes.

Zach

Hi Leigh,

Sorry the path was not better, but please do not think for a heartbeat that you are a lost cause! We all have purpose and value whether we have cancer or not.
I think you are being wise to insist on adjuvant chemo. My dx was not as tough as yours, but it came as a shock to me also. My treatment/RC has been at Mayo's in Minnesota - top notch hospital too- and they reccommended the 4 rounds of chemo for micromets possibility. Passing on the trial was what I would call another wise choice.
The path ahead may look rough and be a bit unclear at the moment, however, I am believing you will be guided down the right path for you even if you have to fight for it. We are here, lots of us pray, you are in my prayers, Holly

Dear Forum,

I had the results from my CT scans of my torso yesterday which were clear!!

The lead up to a result from a scan as you all know is a nightmare and I am so happy they could not see anything.

My happiness was short lived though when I asked more information regarding the pathology reports.

They removed 29 lymth nodes from the operative site and 14 of the nodes had cancer cells in them. Cancer cells were also found in my prostate which was also removed during surgery as part of the standard RC.

My staging is now confirmed as pT4 N2 MO G3

My oncologist would now prefer to watch and wait and have a CT scan every 3 months and offer treatment if any micro mets develop.

I had a pretty hard time with my oncologist as I insisted for adjuvant chemotheraphy. I was told that the benefit from this treatment in his view does not outweigh the risks.

I was however offered to take part in a trial which would involve two groups. Half the group would receive adjuvant chemo the other half watch and wait and it would be a lottery as to which group I would be placed. I decided not to take part in this trial.

I insisted that I wanted to be given the adjuvant chemo anyhow. My oncologist will now take my case to the weekly oncologist meeting next tuesday 18th to discuss with his peers. I will have the outcome the next day on the wednesday 19th.

I wish to have the best possible chance at long term survival just like any of us here. I strongly believe that chemo would be beneficial. It is such a shame that even when we are struggling with our dx in so many ways we also have to fight for the best treatments.

Adjuvant chemotheraphy is a recommended treatment for many cancers in Holland although for some reason it was not recommended. They are however conducting adjuvant chemo trials for bladder cancer as mentioned above which surely cannot be just for curiousity they must have the knowledge from other countries that it is beneficial for patients with probable micro mets and no known distant mets.

It just makes me wonder if I am already a lost cause and the reason they are not offering the adjuvant chemo is because I am a high risk for mets because of the 14 positive nodes which were cut out during surgery. Obviously prior to surgery they had a chance to do nasty work in my system.

I did however read some NKI (national cancer institute)documentation stating that 99% of cancer cells breaking off from the primary tumor or from regional mets getting into the system via lymth or blood die during this process. It still leaves the 1% that could lodge onto something else in my body and grow. How they come up with these percentages I do not know. I did however have 14 positive nodes and the risk for me is very high thus my reasoning to zap them now before I hear the words paliative from my oncologist.

Remaining positive is my prime wish although I struggle many times with my thoughts and the nightmare senarios are dramatically being made up in my mind. I seem to be living from one doctors appointment to the next and the lead up to a result from scans are very scary.

I wish I could learn to live a more positive and fulfilling life in the in between times. It must be really hard on my partner and family and friends during this uncertain time as they live it in their own way along with me. I am making myself feel emotional just writing this which I guess is a good thing.

Kind Regards
Leigh

Dear Wendy,

This will be my first appointment with my oncologist this wednesday with the results from my CT scan also.

My Urologist said he took the heart of the cancer away although two out of all the nodes taken during surgery also had cancer cells in them.

Even though they were cut away during surgery; Does that not mean that the cancer was systemic and this has a high risk of developing tumors at distant sites?

I have seen the ravages of cancer and death with my Mum whom sadly passed in 97 from breast cancer and my grandparents with throat and lung cancer 93 and 00. My best friend died of aids in 92. My partner of 10 years died suddenly in 2001 from an aneurism while on holiday in Florida.

Losing loved ones is very difficult with all the trauma and pain associated with it. These tragic events in my life have not made it any easier to deal with my own cancer. I am now experiencing many of the fears and emotions my dearly departed loved ones would have faced connected to a savage disease. Being a cancer patient now myself puts you into a totally different dimension of life.

It has however made me very appreciative of everything in my life and I try to enjoy everyday consiously. It is amazing how pleasurable the little things can be when I am more consious of my actions. I learned this in hospital in September recovering from my RC when I could not eat or drink and an ice cube was offered to sooth my throat. That ice cube was enjoyed so much until the very last ice crystal melted.

I am determined not to be a statistic and to fight to be a cancer survivor which is positive. I promised my sister that I will do all I can to fight this nasty silent killer.

Thank you so much for all your help and support it really is much appreciated. I am not a religious person although I am a spiritual person. I strongly feel that we are here for a reason and to serve a purpose. You have been an angel of support to me and so many people on this web site. I would like to thank you from my heart for the positivity and love you send out to each and everyone of us.

Kind Regards
Leigh

Dear Leigh,

In all aspects of cancer treatment, patient preference is paramount and is almost always respected. Of course a person must be informed about their actual options in order to make an educated decision along with their medical professional.

I went to the NKI/AVL in Amsterdam for treatment (breast ca.) and had the unique experience of participating in my choices, being a true partner in my care and I think it helped both me and my doctors find the best path. I'm still here, that's a good sign!

As Cynthia calls it, "informed medical consumerism" is the goal of this forum, and should be the goal of all support groups in my opinion.

I hope your consult with the oncologist brings you the best path for you.
Wendy