Trials, Targeted, Immuno, Sirtex, Ablation and Surgery, genetic – MIstakes

Discussion Forum Discussion Forum Introductions Trials, Targeted, Immuno, Sirtex, Ablation and Surgery, genetic – MIstakes

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    Dear All, Sharing my story in case someone can benefit from what I’ve done and learnt since April 2019. There is also a group on FAcebook initiated by AMMF – strongly recommend you join to talk people with CC or if you are a family member. it’s Rare cancer, lots of doctors and hospitals are VERY limited, knowing what is available, what to ask for etc. is very very important to avoid losing on opportunities and the people in the group got experience, knowledge and share whatever they know with each other. The group is closed as not everyone feels comfortable to talk openly, so you need to register to join.  I have decided to post my story on forum as well because I feel responsible for sharing what I’ve learned with everyone who is looking for information and it is not possible if I share my story with a closed group only.

    My name is Aga Koletsis and my husband got CC. The reason I’m writing is mostly to share my experience for others not to do the same mistakes as we have done as it may cost my husband his life, we have lost lots of time unnecessary and I’m very frustrated but also full of hope. My husband was diagnosed on his 59 birthdays, got jaundice out of nowhere, hasn’t been to the doctor for over 20 years, healthy, zero health issues until then. WE are lucky we are living in London, he was referred nearly asap to prof Brian Davidson, amazing surgeon, who diagnosed cholangiocarcinoma and offered whipple surgery nearly asap, even without biopsy which was very unusual. Our mistake number 1 – my husband didn’t believe he had cancer and insisted on biopsy first. It delayed the surgery by a month and half and the cancer kept growing inside, additionally he got pancreatitis after biospsy and spent a week in hospital in pain with infection. In retrospective if he had the chance he would have pushed for the surgery without biopsy. His surgery took place end of May, was uneventful (which is our favourite world I think), but unfortunately his tumour was larger than expected and he had 8 out of 24 lymph nodes affected by the cancer, which put him into stage 3. He was offered oncology treatment in the same hospital. I was originally going to transfer him to another hospital/ to a very good oncology professor whom I approached directly online and he offered to take my husband asap/ but I was told by our nurse that all hospitals offered the same treatment so there was no point. I believed her. Mistake number 2 – I believed in what she was saying and it’s not true, not all hospitals offer the same treatments and not all doctors got the same knowledge, experience and attitude, and your life is in their hands so always aim to find the best doctor you can and always get second opinion, even if it’s not welcomed by your doctors. We stayed in our hospital and In June last year my husband started 6 months chemo, at that time you had a choice between gem/cis as part of the trial or Capecitabine as standard. He went for the trial and had 6 months gem/cis which unfortunately hasn’t worked for him. He had scans Jan 2020 and March 2020, both clear, but in June this year the scan showed lesions in his liver. We were told not to panic as it might have been something else and wait for another scan (wasting time again) but I think we both knew it was metastatic cancer. My husband got now 3 tumours in liver and changes in his pancreas, he is losing energy and is in pain. Since June he hasn’t had any treatment as lots of time has been wasted waiting for various tests. And here I’m coming to the mistake number 3. I didn’t push something I believed was important from the start. My husband had cancer in his family, his niece and 3 cousins (first line) have had aggressive breast cancer with a rare mutation BRCA1 and BRCA2. His niece insisted I told our doctors about it so I told about it in our hospital a year ago, it was ignored, I mean I was told the tumour was going to be tested for mutations and if there was something important it was going to be discovered after the operation. I’ve assumed it has been done. I’ve assumed it has been taken into consideration/ put on file. It was a big mistake. Never assume. This year when the cancer returned our main focus was on finding alternative options instead of another chemotherapy as we know it’s working for a short time (our oncologist was happy to discuss with us how my husband wanted to die.. literally.. it felt like they old gave up on him already ) – I’ve contacted professors in Germany, Italy, Poland, and 2 independent opinions in the UK – got a mix of very different recommendations: immediate surgery (Germany/ Heidelberg/ at cost 70,000 euro/ it looked like a very serious procedure with no guarantee), immediate radio ablation (Poland/ seemed like a very good option, with minimum risk, and available in the UK if recommended by MDT), sirtex (UK/ Hammersmith hospital/ expensive and with mixed opinions, may even make it worse according to some doctors) and targeted therapy if available or trials (UCHL/ London) subject to testing the tumour for various mutations. I took all the opinions back to our oncologist asking her to push the genetic testing and radio ablation as it was something looking very promising but it was refused by 2 MDT (cancer came back too soon to qualify). Sirtex and surgery have been refused by MDT as well. It all took us until end of July. After all the ‘no’ answers we decided to go to Italy to do the ablation privately, but my husband had another scan and it unfortunately showed that the cancer spread further and it was too late, we had to admit that we waited too long and missed the opportunity. The only options left to my husband were standard chemotherapy either the same as in the first line or Folfox or targeted therapy, only available for specific type of mutations. My husband decided to wait for the results of the genetic testing before deciding for standard chemo. The tests were requested early August and came back end September – unfortunately my husband didn’t qualify for the targeted treatment, it was a blow as it meant the standard ‘general’ Chemotherapy either Gem/Cis again or Folfox was the only option. I’ve nearly given up on trying to find alternative when something surprising happened. In August I decided to send a copy of my husband’s niece file to our hospital again, just running out of ideas, to make sure they were taking it into consideration, and to my surprise they decided to refer my husband for additional genetic tests, I was sure it had been done already! Second surprise was that our oncologist decided to refer us to one of the professors I contacted for second opinion a year before saying he could probably help my husband more than her, prof John Bridgewater. AS soon she officially referred us to him, we met him (again), he offered my husband new trials and sent my husbands’ tumour for additional tests in the USA as priority. After the meeting I decided to send him the same document from my husbands’ niece showing her mutation and he emailed me back immediately saying that he was convinced that it’s exactly the mutation my husband got and he is requesting additional testing immediately as the tests are not done as standard. 4 days ago he emailed me on Sunday to confirm – my husband got BRCA mutation, inherited probably from his grandmother, which means there may be targeted therapy available to him. We are full of hope. WE are now waiting for the approval for my husband to start the treatment with Olaparib, which is an inhibitor repairing the genetic code (my understanding, so please do your own research to understand it better), hopefully withing a week or two, and we hope it’s going to work but it’s 6 months his cancer kept growing in his body making him weaker. If not I’m sure we are in the best hands right now with access to all the trials and options available.

    What was my mistake no 3? If I pushed for the change of hospital/ doctor and for genetic testing a year ago when I felt there was a better option available, we would have had the results last year and in June this year my husband could have received targeted therapy probably some months ago instead of losing 6 months and having the cancer spread in his body. Always look for the best doctor and always get second opinion and always keep searching for options as there are new treatments available all the time so never stop exploring. it’s the lesson I’ve learnt. And if the doctors don’t like the fact you are getting independent opinions change the doctors if you can for someone open minded.

    I’ve learnt a lot of lessons and I keep learning, just regret there is no second chance to do it better. I just hope that my husband lives long enough to get cure, or get the tumours reduced to a size we can do the ablation or surgery which we believe is the future together with targeted treatment, also for metastatic cancer.

    I’m not sure if any of the above is helping any of you but if you need second opinion get a copy of your file from the hospital (you have right to ask for a copy of all scans, blood tests etc) and approach the best specialist in UK and outside UK directly, I’ve found their contacts online by reading articles about trials and most promising treatments and sending emails to the authors, finding them mostly by searching the contact pages on the hospital websites. ALL of them replied and have been very helpful. Only one offered private consultation charging for his time, all others simply shared their opinion via email and offered taking my husband as their patient subject to GP referral which I did in two cases to get their full opinion. The worst scenario is that they don’t reply but it hasn’t happened to me, I was impressed that world class specialists found time to read my email, check files and reply with basic opinion. There is also a free service ‘mytomorrows’ which searches all trials around the world for you, very helpful as well.

    Wishing you all the best hope that my mistakes may help you not to make mistakes and give you some helpful information you can use for yourself. Aga

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