My husband has been seeking a second opinion for his terminal diagnosis of bile duct cancer from a new specialist in Leicester. Our first visit to see him was at the beginning of September to discuss the latest CT scan. There was no change from previous CT scans in the past 14 months. He sent him for an MRI scan and blood tests and said that it might not be cancer.
Hubby and I went to see the new specialist on Thursday to get the results of the MRI scan and blood tests. He says that the scan shows not much of anything! It certainly shows no change since his last MRI scan 14 months or so ago. Nor have the CT scans he has had over the past year shown any changes. The blood tests show no tumour activity either. Nor have they in the past (we were not aware of that).
The doctor is now scheduling a laparoscopy procedure in a few weeks to go in and look around and get a tissue sample for biopsy. Which, his original doctors have never been done before! We didn’t know that they had never done a biopsy! They had gone in to to other procedures when he was first diagnosed and we just assumed that they had done a biopsy.
The new specialist said that if it is cancer it is very unusual for this type of cancer to have no change or spread after this long. But, he also said that it is possible that they could go in and see something that was not showing up on the scans.
How can doctors tell someone that they are going to die in 3-9 months and put them through months of chemo without doing all of the tests necessary, or possible to diagnose? Even the new specialist said that he would not tell someone that they had a terminal illness and put them through chemo without a tissue sample first.
The only thing they did do was take ‘brushings’ (a sample of a few cells) at the site when they did the initial endoscopy approximately 14 months ago and they were negative for cancer. We didn’t know that either! Also, the new doctor said that if the cancer diagnosis IS wrong he could be limited in treating my husband’s condition because of the stents they put in his bile ducts. He said that there are many other conditions that present with the same symptoms that are treatable and not terminal. Why didn’t they test for these other things or at least do a biopsy to be sure it was cancer?
Hubby is up and down and all over the place (we both are) as you can image. He just says keep your feet on the ground. They really don’t know for sure if the cancer diagnosis is wrong. They could go in and find that it is cancer. We just don’t know for sure. We have to wait and see. He also keeps asking me what I think is going to happen. I tell him that I am hoping for the best and I will be right by his side no matter what.
The waiting is really hard.
I know they may do the laparoscopy and say that the original diagnosis of cancer is correct. But, I still can’t stop myself from hoping and feeling like my husband is not going to leave me. I also feel very angry at the doctors that have possibly misdiagnosed the cancer or, should I say, didn’t bother to do all they could to correctly diagnose his illness. I can’t help it.
This last 14 months or so have been extremely hard. I have been feeling physically ill myself and my brain is like mush. I have just started taking some time off of work for stress related illness and exhaustion.
The only positive thing that has come out of this so far is that we have had the chance to say how much we love each other and how much we mean to each other. We have become closer and appreciate each other more. That is something lots of people don’t think about until it is too late or you take it for granted.
Also, it shows you who your real friends are. Who is really there for you and who isn’t. I have some lovely neighbours and a few friends who offer more support than some family members.
I feel guilty for even moaning about this. There are many people on this site who are dealing with so much more and some who don’t have the hope of a second chance like we do.
I am praying for that second chance and I am praying for the lovely, caring and supportive people on this website. Your kindness, humour and courage are amazing and inspiring. Thanks.
Rant over.
Love,
Becky xxx
