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Tips/advice 4 chemo please :-)

Dellsbells
Posts: 6
Joined: Jul 2012

Hi all, finally have full diagnosis. Mass in lower lobe of left lung cancerous, confirmed by thorasic biopsy. Told nodule in uterus had been confirmed as large agressive carcinoma tumour, review of my file and recent gyny history, plus the fact that they had confirmed lung cancer they (oncology, lung & gyny specialists, plus laboratory analysis team confirmed kung is not primary/primitave source) gave us confirmed diagnosis of uterine cancer. Immediate date set for surgery allowing for all possibilities, starting with full internal biopsy, followed by visual assessment, then followed by 'best option' surgery. The normal method of biopsy had been deemed impossible due to location and size of tumour, so this was accepted by us as well as the most immediate and effective way of moving forward and I fully prepared myself for all outcomes, what has to be has to be and I will deal with whatever I wake up to.

We had to then tell all my family/close friends about the imminent surgery and announce the fact that I had been told that I had two "seperate" cancerx. I wrote everything down in b&w for family (leaving out certain not nice details) so that they could read, absorb, go back to it, ask questions etc. I had to give all 3 options for surgery for the 9th August, but, having discussed it with my husband I put in a 4th option which was, nothing is ever 100% cancer until it has been analysed under a microscope and cancer cells have been identified, therefore, it may be a bloody miracle, but they could just do all the investigative part and decide it is not cancerous after all and just close me up and leave all my bits in place !

The hardest part for me so far was this, breaking the news to my family, especially knowing that my nieces & nephews were going to be told, heartbreaking (we have no children so they are all my World from 27 down to 12 :-)) we have already had su h horrendous tragedy & pain & loss in the immediate family since 2010 so I just did not know how everyone was going to cope. Of course, they were all fab, though my mum keeps getting confused about details, my brothers keep her on track. The best words of love and encouragement came from the nephs & nieces, they helped me dig deep to that incredible srength that I know I was born with.

So, imagine my complete and utter ecstasy, shock & jubilation when coming round from surgery I asked one of the team hovering & sorting, "do I have all my bits?" they saide yes, now I know I was under the influence of drugs and was planning on walking back to my room !!! So ok I was doolally, but I remember him saying that. When the head surgeon and his team appeared at the end of my bed at 4pm and announced that they had as much as is possible confirmed that they (there was a second nodule) were NOT CANCEROUS, so they did not do any of the planned options ! Obviously they adivsed that they had biopsied every square inch of my entire reproductive system while they were there and those results would be confirmed next week. My husband & sister-in-law couldnt get out of the room quick enough to make those phonecalls. Call it whatever you like, common sense, one of those things, whatever, to me it is a little miracle being created by those I love up above :-):-):-):-)

So, back to today. It is now one week on, bruises and stitches and internal pain (boy did they move things about in there & not sure there isnt a surface they didnt scrape =-O) but I am doing brilliantly, in excellent form since the day they let me come home, the only discomfort and continued pain is the port they put in and the stitches/pain in the vein in my neck, but I understand this could take another week. We had no idea they were installing a Port (might as well while I am out of it) and had no idea what it was or for, so that caused a little bit of shock, having researched it when I got home, I am thrilled they have done it, I also have very thin, difficult veins, so yes thank you :-)

My rendez vous with the Oncologist is 9.30am Friday (am being given another week to recoup) then wewll be told the treatment plan for my lung.

After that long winded post, this is what I am looking for, before I start chemo, any/all personal experiences, tips, advice, warnings etc would be hugely appreciated. Food wise I am generally well informed, have adapted specifically since being told about the cancer cells, but would still appreciate any advice. I live in SW France so don't have the same access as UK or US to organic foods, vits & supplements, but what I need I find a way to get so tell me all, PLEASE?

Apologies for such a long post, but there has been a big gap since my first post.

Thank you in advance, Edel :-)

Samsungtech1
Posts: 350
Joined: Jan 2011

Edel,
Am so happy for your great news. I have been visiting here lately because my prostate cancer spread to lungs. I have said this before, but not sure if this is available in France. A doctor in Switzerland developed a procedure called Radiosurgery. It should be available in France. It might have another name over there. I had five nodules on lungs and underwent 12 treatments. This is very high radiation. My nodules have disappeared. None were bigger than 14mm. They can treat up to. 1.5cm. Not sure about all side effects yet. I have lost a little short term memory. Might be other effects, but because of treatments for prostate cancer, I can not say exactly what I am suffering from and what caused it.

Good luck to you.

Mike

Dellsbells
Posts: 6
Joined: Jul 2012

Thank you Mike. This is only my 2nd rdv with the oncologist, the first was all about the confirmation of the lung diagnosis, but, that it was being put behind the urgency of dealing with what the believed was going to be proved the 'danger' the large uterine nodule hyperfixated on the PET scan, they had also carried out specific tests to rule out ovarian primary cancer, so to be honest we were assured that the lung was very treatable, but don't worry about it for the moment. So we didn't. Now that has been 'dealt with' its onto the lung battle.
I will have a very long list of questions for Friday re all available possibilities of treatements, that's where peoples real life experience and advice can really help me prepare. The Oncologist is my kinda Dr, full, direct, open conversations, listenening, replying and all directly with me irregardless of all others in the room. I am a 'big picture' person, I research, review, question, review, leave it, go back to it, then make clear decisions. But I know already from my dealings with the medical culture in France that (in general) it is still very much 'the God complex' they decide on your behalf, all discussions are held about you behind your back, judgements are made (rightly or wrongly) and as a result things happen/don't happen outside of the patients control/agreement. The Oncologist has made it clear to me that he has been briefed by the head of the pain clinic at the hospital (I have fibromyalgia, spinal damage & osteoarthritis) that I am a participant, that I am intelligent & demanding (I only expect people to do their job!) My belief is that my health issues are my responsibility to live with and manage with their help. They have previously turned down my requests for full body scans to gain an uptodate assexsment of what is going on, because I know I have been 'sick' since 2009, but I have been dismissed, patronised and ignored et voila, they had the opportunity in Feb 2011 to have diagnosed this, but didnt due to their 'attitude' towards me.

Anyway, I digress (repressed frustrations). I am absolutely not going to allow anyone to treat me like this in the medical service from now on. They may find me demanding, but hey it's me that has to fight this, go through it all and do my best to survive. In my career I worked my but off to make sure I did my job to the best of my ability and to make sure the Client trusted me and was happy, so I don't think its too much to ask of someone who's career is about life and death.

So, back to your treatment advice, when they talk about treatments used in other countries, do they expect you to go there for treatment or do they adopt the treatment into their protocol and carry out the treatment ? Apologies if this seems a silly question, but I have already been advised about fabulous cancer treatments carried out in Germany, but that I would have to do it at my own expense outside the French system.
My lung mass is 34mm x 28mm, apparently anything above 20mm is deemed to be in the Large Category, so I don't know if that would be a deciding factor in terms of what they can/cannot do. When you see the print off of the scans in b&w it is about a 5th of my left lung, apparently attached at the back of the lung which is problematic in terms of surgery. The lung specialist said surgery nit an option, but, the oncologist reviewec the MRI/PET scan disc and said he believed that it may be an option, something to do with seeing scar tissue in the mass. We really like this guy and his attitude and way of going about things so I hope I am not disappointed on Friday.
I am assuming the fact that they installed a port on the 5th that I am going to be starting chemo pretty pronto. I have no idea how long chemo sessions take and what state you are in while it is happening, but my plan is to read, read, read all about survivors, their stories, their experiences, their advice, to me that is as important (if not more) than the 'Professionals'.

Thanks for your reply Mike, much appreciated, Edel :-)

romania
Posts: 1
Joined: Sep 2012

I AM FIGHTING LUNG CANCER TOO FROM LAST YEAR AUGUST2011 .IT IS NOT AN EASY ROAD BUT YOU HAVE TO STAY STRONG AND POZITIV THRU ALL THE TREATMENTS AND CHIMO.I WISH YOU ALL THE BEST AND HOPE TO KEEP IN TOUCH.REGARDS CRISTI

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