Good Morning Ladies,
I have started working with a cancer naturopath that works directly with my team no matter where I am at with this disease. I was deemed NED in Jan but was experiencing some symptoms and contacted my team last month which then moved my 3 mos appt up by a couple of weeks. Met with a new Oncologist on the team who seemed a bit dismissive but I took it in stride. I had bloodwork done and initially everything was good except potassium was a bit low. CA 125 levels were not back yet and was advised I would be contacted. I left it for a few days and then called back to get them. I had gone from a 32 in Aug of last year to a 40 currently. Not a huge jump but a rise and definitely over the normal level. I then asked for my CT Scan that was done in Jan 2022 and picked it up yesterday. It is showing mild anterior mediastinal soft tissue stranding as well as low density focal masses on the liver (3 of them) that have all changed in diameter since the last scan. I contacted my team and asked about what next steps would be going forward as I was not sure. Would it be a wait and see? Change in frequency of check ups? Automatic meds? They decided to perform another CT scan which I will receive in a couple of weeks. Has anyone else experienced any of this in similarity of presence? I am aware that the recurrence rate is high and for now have not told my family at all until I have more concrete answers for myself. I feel I need to process this all myself before I approach it with them. Any thoughts on this?
Wondering if you've now had that follow up scan and what it showed. Your description sounds much like my first recurrence I'm afraid to say. For me that was about a year and half after finishing primary treatment. CA125 was mildly up and not enough to warrant anything more than watch and see but since I was also experiencing some changes in bowel habits they scheduled a second CA draw for a month out. That one also showed another rise..not huge but enough to say a scan was warranted. That's when they discovered the recurrence in the form of stranding in my upper left and right mid sections which they now track religiously. That was in late 2018. The stranding means the recurrence can't be surgically removed and the odds on destroying all those cancer cells with chemo is nil. But we have been able to control progression so that so far, with one clinical trial that worked for almost two years and successive chemo cycles as needed I'm still kicking and able to live with this disease fairly well six years later.
My family is small, just really my husband and my 34 year old son and we had made a pact at the outset of complete transparency so I didn't hold back with my concerns and we worked through them together. That said, I respect your need to have more definitive information before sharing. You know what your family can and can not digest and it is often easier on them to have the facts but also know there is a plan in place moving forward. And, you do need your own processing time if, in fact, a recurrence is in place. So take communicating at a pace that is comfortable for you.
I do hope this is not the case. But if it is, there is so much new in treatment and approaches that there is hope. Maybe not for cure but to be able to live with this disease longer term than the statistics show....they, by the way, are very old and really don't reflect the reality of this disease in today's world.
If you haven't already, OCC also produce a follow up book to By Your Side called Still By Your Side which specifically addresses recurrence. While, like By Your Side, it deals with the subject generically it's quite helpful in planning for your oncology meetings and questions you might need answered.
I hope this has been helpful, or at least somewhat reassuring. Please keep us posted and do reach out as new questions arise or you just need a place to 'talk".
Thank you for taking the time to reply. Time can get away from us all and then there is the brain fog aspect as well.
I had my CT scan last week on Thurs evening so I am waiting to hear from them now.
I decided to talk to my husband on the weekend and asked him what he did or did not want to hear or know throughout this. He decided he wanted to know everything I knew, so I updated him. It hit him like a ton of bricks but am glad he knows now. We are not telling our children yet as I had difficulty even telling my husband that I did not have all the answers yet.
I feel that I am experiencing a recurrence and am not in denial about it. My appetite is decreasing again even though I am hungry. My sleep was not great last night but I think part of that is the "not knowing".
I am doing my best to carry forward but I would like to have some answers and know what my options may be. I will give my team until the end of day tomorrow and then I will be calling to find out what is going on.
I do know she put down that it was a reseeding and wanted to know staging as well on the CT Scan.
I will let you know once I know more. The waiting is brutal!
Sometimes I think one of the worst parts of this disease is the waiting...so many answers needed to be able to put the entire picture together and the wait seem interminable to get all those answers in hand. Stay strong. You'll have what you need in no time and then you can start to think realistically about your future. We're all here if yoyo need us and do let us know when you get your results.
A big virtual hug from all of us for now,
Thank you and I agree the waiting.....the waiting....
I have a 4mm calcified granuloma noted on the left lower lobe. There is no mediastinal masses noted. The few well circumcised low attenuation lesions are compatible with with hepatic cysts (benign I have been told).
That is it. The report itself was very short compared to the last one.
I spoke to Oncologist about the inconsistency of my reports (CT scans) as 2nd one refers to comparisons of the first with the first one being clear throughout. Then reporting things in 2nd and now in 3rd all gone. She asked if I wanted radiology to have a look at it again and I said yes. She was to notify me if anything came up but I am also hesitant not hearing from her as she did not notify me when my CA 125 was elevated. End result, I am to continue on with my life and we will redo the CA 125 levels in 3 months time and office visit a week later. I was informed that my increase of size since Jan to Feb by 3 inches everywhere is surgically induced menopause. My surgery was a year ago on St. Patty's Day and I finished chemo on Aug 13th of last year. I was queried as to whether I could basically "up my game" to overcome this. I did inform her, I am very active, work full time and some days go to the gym twice a day, work with a naturopath and have been told my diet is good. Then she didn't know what to say.
It is all frustrating.
All I can hope for is finding out this month what is or is not occurring in genetic testing as I have an initial meeting coming up after Easter. I am very curious to find out what they may or may not know based on family history etc.
It is not that I actually want anything to be present and should be overjoyed with the news but it is the inconsistency that is concerning to me. As many of you have also reported, I was basically asymptomatic until I had a GI bleed and at that point had a slightly elevated CA 125 level but not in the thousands and had a biopsy not been performed at time of colonoscopy, I am positive I would have remained undiagnosed for awhile after that. At time of surgery, I was a Stage 3C. Like many of you as well this disease progresses and is detected late.
I also go for a bone density test this month (at my request) to see if we can come up with a baseline post chemo.
That is it.....trying to remain positive but still hesitant in my head.
I understand your concerns and frustrations. I have six years of scans and when I compare the reports there is little to no consistency in content. It seems to depend on who reads it and how they express their view of what they see. I've even had one who did a comparison to the wrong previous scan throwing us for a loop one day until we realized what had happened and had the report redone. Add to that, not everything shows up on the scans. My abdominal area is riddled with adhesions, to which many of them have cancer cell attachments. None of this has ever shown up on my scans and only discovered two years ago when they tried to do a hernia repair and couldn't get through the mass to get to the hernia. And then I've noticed of late that the scan process has changed for me. I no longer have to drink the contrast fluid or anything before the scan. Just in, get the IV inserted, dye gets injected and scan done. In and out in 20 minutes instead of the usual hour and half. Why? Still haven't gotten a reason other than it's radiology that decides what process they'll use.
At the end of the day though the scans are all we have to go on and generally they are reliable. Be careful of trying to read your interpretation into them though. If there is cause for concern your oncologist, assuming you have an gynecological oncologist, will pick it up. But do read the reports and use them as a basis to ask questions against each item until you're comfortable with the answers.