Shock and augh!
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OMG! Marion I am so glad you said that. I have been feeling the same way. I feel the same way about Rob’s Doctor. It has really been bothering me and perhaps others have not checked in on this afraid of upsetting something. I am wondering if Rob can change doctors within the VA he is at. I hate to say this but the VA Hospitals don’t know much about CC. I was also concerned because the Doctor seems to not be giving Robb meds he could use to make himself feel better. Rob….look at us writing like you may not see it. We just care Rob and when a case comes up where we feel injustice is being done we get very upset!
Rob….I had another thought. We have had patients treated at the VA Hospital In Bethesda. http://www.va.gov/
Are you eligible to acquire a second opinion at this hospital? Or, could you be treated there?
All my best wishes,
MarionRob……I don’t want to cause any problems, but am having a hard time holding back. Your primary care doctor made a huge mistake by not following up on the recommendations made by the radiologist. Is he still your doctor? If so then he should be bending over backwards for you.
Sorry, some things just get under my skin.
Hang in there.
All my best wishes,
MarionWell I am being seen at the Micheal E. DeBakey VA Regional Hospital in Denver. And as you may or may not know you have system you have to go through. The first doctor who noticed the liver function increase was a primary care physician. The Radiologist did recommend an MRI after I did the ultra sound a year ago but my Doctor decided it was un-necessary based on my age, general health, and no other indicators. It wasn’t until I presented about 8 weeks ago with pain and digestive issues that things started to get checked out. But by that time the tumor was too large and had spread to other sites and so now I am not a candidate for surgery.
I am a 42 year old male (be 43 in November). I really want to go somewhere else but I am trapped. As a Pastor for a very small church I am not finanically able to go anywhere else for treatment. I always had to suppliment income by doing side jobs remodles, furniture making etc. Thats a thing of the past at least for awhile.
I think I have some good Oncologists but it’s the VA Beuracracy that is going to be the death of me. I’ve been assured once treatment starts it will all be agressive but it’s the intermidable waiting.
Hi,Rob,
May I ask how old are you?
In general, ultrasound (US)result highly depend on the person’s experience and technique who performed the US; If something is not clear ,CT or MRI to follow is the recommendation.
Anyway,CC mostly is a slow growing cancer.For example ,in my situation,in 6month,base on CT report and MRI results,it grows from 0 to1.5cm biaxial in 6months and again from 1.5cm to 2.3cm biaxial in another 6 month.But of course,you have to considered the cut’s thickness of the CT scan or MRI slides too before you really can determine how long you did have the CC.
God bless.Rob, our first rule here is to get a 2nd and 3rd opinion if needed. Your concern is understandable. Where are you being treated? You have every right to gather all your test results and to send them to someplace like Mayo Clinic in Rochester, MN or MD Anderson in Houston and get another opinion. I was just re reading your posts here and want to add that because you do not have pain does not mean CC is not growing. That is why so many are not diagnosed until later, they just have no clue it is there. Has this doctor you are seeing had other CC patients? So important to be with someone who has experience with CC.
The reason that I question it is that I did have an ultrasound of the liver in August of 2010 after my liver panel came back elevated. At that time the report says nothing was visible though they could not confirm the deep tissue. They recommended an MRI but becuase of my age and overall health my Doctor decided against it. So in essance the tumor grew from unvisable to 13.3x9x12 in a year and a half.
I am asking because my Doc’s don’t seem to be moving fast at all. My latest scan shows two more lesions on my liver, 2 lymphnodes and multiple hot spots all in that 1 1/2 years to me that is agressive.
Hi Rob,
When my husband was diagnosed, the surgeon told him that CC is a very slow growing cancer; that’s why it’s usually in the late stages when you first show symptoms. John had no symptoms and was very healthy; he ran about 5 miles 3 or 4 times a week and had yearly physicals. He questioned why nothing showed up in his blood work but the doctors said it was because the blood work he was having done wouldn’t show this type of cancer. The surgeon told him that he could have had CC for 10 to l5 years. His right kidney was completely shriveled up and the surgeon said it had not functioned in a long time. To tell you the truth, I don’t think the doctors really know how long you’ve had it or what your prognosis will be. That’s why you’ve got to keep a positive attitude and fight with everything you’ve got. Oh, they did tell John that had he not been as healthy as he was and still relatively young, they probably would not have done anything. Yet, I see posts on this site where people in their 80’s are being treated. So, just hang in there and you’ll get a lot of support from the people on this site. PeggyP
Robert, the only safe assumption for doctors to make is that all cc instances are aggressive and fast growing. In my case, most of the resected lesions were not aggressive, but the final pathology report noted that some very aggressive tissue had been removed, and that was justification for the onc to recommend adjuvant chemo for six months right after the resection. From a treatment perspective the fast and aggressive assumption should always be made. I believe that some slow growing causes may transform into very aggressive ones with no warning and very little in the way of observable symptoms. My doctors at NY Presbyterian all assumed aggressive and fast growing cc.
Rob….when diagnosed my husband was told that his tumor had been there for approximately 2 years. His blood test had been normal until then. I am hoping for others to chime in also because; we have quite a few variations regarding diagnoses and time of disease progression.
Hang in there. Too much is still to be determined.
All my best wishes,
MarionDear Rob, we always hate to be evasive but just like we know not much about CC and the way it reacts on everyone, sometimes it is aggressive sometimes it it not! I am not sure but perhaps after the biopsy they can determine from the cells what kind of ‘attitude’ it has. Hang in, be strong! Best of luck on the bio.
Thanks Everyone! Susie I will give it a try. I talked to my Oncologist and he said if I did not have pain it would be ok until I come in to clinic. So I guess I will have to wait.
I was told that I am not in a surgical state at present the cancer has matastisized. My Biopsy (which I think should have been done along time ago) is scheduled for this Friday and then treatment after Pathology comes back.
Can I ask anyone who might know is CC normally this agressive? I mean 2 years ago there was no sign of anything in my blood. 1 1/2 years ago I had elevated liver functions and now I have a huge tumor, two small lessions on the liver, two infected lymphnodes, and hotspots throughout my abdomen. Im trying to figure out if the growth speed is being considered by my doctors adequately.
Susie….thanks so much for sharing your professional opinion. Now how did you get away with keeping your secret of being a liver transplant nurse? There is much for us to learn from you. Please, don’t hold back. We appreciate all you can share.
All my best wishes,
MarionRob,
I’m not sure that I’ve ever mentioned this on this borad, but I’m a nurse and I used to work on the liver tumor/transplant floor and then went to the transplant ICU. And, now ironically I have a liver tumor! Anyway, some of the patients would obviously get ascites if they have liver issues, but sometimes they would get edema in other parts of their body, commonly their legs but also their testicles. I don’t know if that is what is happening to you since it sounds like it’s only one side, but maybe a possibility?? Either way you should have someone look at it asap. If it is just swelling, then yes, washcloths under the testicles help. Best wishes!
Susie
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