confused by diagnosis

Helen321
Helen321 Member Posts: 1,459 Member
I'm wondering if the first doc missed something or if it is just spreading as fast as Sloan says it is because I went from one possible spot on my lymphs that was discounted to lots of rectal lymphs involved with yesterdays MRI and one pelvic lymph already involved in just a month. Now the growth has broken through the wall further than thought. Spot on the ovary is still there, doc thinks it's a cyst, wants to wait until surgery to check out. Surgery is now January. That seems illogical. Finally at least a doctor as concerned about the bleeding as I am is moving things along very quickly. She did exam and she saw blood instantly, didn't like the growth rate (she said she could actually feel the growth) and blood combo. Start chemo Monday but today it went from Xeloda x5 to Xeloda x7 with an IV treatment every other Monday. I just feel like someone is not telling the truth. Maybe the first doctor totally missed something or just diagnosed wrong. I was told no by Sloan, it's just moving very fast but somehow I just don't believe them. I know the two doctors know each other. I'm now going to Montefiore for a third opinion since I just don't know what to believe anymore. I don't want to find out the hard way they're misdiagnosing me and this is aggressive or it's in more places than expected. I would be willing to do a surgery to check my ovary. I'd rather just remove it then wait. I am not having any more kids. Head swimming. So tired. Definitely sleeping tonight.
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Comments

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    Getting a second opinion is
    Getting a second opinion is always a good thing. I don't really have an answer for you as to why your surgery seems so far away, except that the plan is to shrink and kill the cancer with chemo. prior to doing the surgery. Others who have been in this situation will let you know the reasons.
  • Helen321
    Helen321 Member Posts: 1,459 Member
    smokeyjoe said:

    Getting a second opinion is
    Getting a second opinion is always a good thing. I don't really have an answer for you as to why your surgery seems so far away, except that the plan is to shrink and kill the cancer with chemo. prior to doing the surgery. Others who have been in this situation will let you know the reasons.

    This will be my third
    This will be my third opinion because things are just not adding up. Why would I go from one possible lymph spot last month which didn't pan out to so many in just a month? I only got the results over the phone today and the words were "most of you rectal lymphs and one pelvic lymph have spots". I actually wanted to say WHAT???? But I just said how is that possible so quickly. The response was it's just not following normal patterns. I know the tumor is growing very quickly but how can it spread so quickly if it's not aggressive cancer? I know why the surgery is so far away. . . Four months chemo (xaloda and oxiplatin). Six weeks chemo/rad. but I don't see the logic in ignorning the spot on my ovary because it "might be a cyst" (thanks to you, I am very pushy now to get explanations!). Personally, cut that crap right out of my body, I don't need my ovary. I'm going for my oxi Monday and I will have a list of questions ready like can we do a new colonoscopy/biopsy and not use the one from the old hospital as a diagnosis. I just don't trust those slides now. It turns out my old surgeon and new surgeon know each other. I don't think my new surgeon would tell me if my old surgeon screwed up and I just want a fresh new overall workup with this new diagnosis. Let's make sure this is not aggressive cancer. I hear that is the most misdiagnosed and therefore disastrous 5 year result cancer. One month is just way too fast for my comfort levels. I know there is no such thing as normal but this is wayyyy outside the norm.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Helen321 said:

    This will be my third
    This will be my third opinion because things are just not adding up. Why would I go from one possible lymph spot last month which didn't pan out to so many in just a month? I only got the results over the phone today and the words were "most of you rectal lymphs and one pelvic lymph have spots". I actually wanted to say WHAT???? But I just said how is that possible so quickly. The response was it's just not following normal patterns. I know the tumor is growing very quickly but how can it spread so quickly if it's not aggressive cancer? I know why the surgery is so far away. . . Four months chemo (xaloda and oxiplatin). Six weeks chemo/rad. but I don't see the logic in ignorning the spot on my ovary because it "might be a cyst" (thanks to you, I am very pushy now to get explanations!). Personally, cut that crap right out of my body, I don't need my ovary. I'm going for my oxi Monday and I will have a list of questions ready like can we do a new colonoscopy/biopsy and not use the one from the old hospital as a diagnosis. I just don't trust those slides now. It turns out my old surgeon and new surgeon know each other. I don't think my new surgeon would tell me if my old surgeon screwed up and I just want a fresh new overall workup with this new diagnosis. Let's make sure this is not aggressive cancer. I hear that is the most misdiagnosed and therefore disastrous 5 year result cancer. One month is just way too fast for my comfort levels. I know there is no such thing as normal but this is wayyyy outside the norm.

    Are they comparing the same type of scans?
    Is the recent MRI being compared to an earlier MRI? I ask because I have found in my own experience that different scans have different results, so comparing, say, a PET to a CT scan (this was my experience) may yield very different results. I had cancer that showed up clearly on a PET and MRI, but not on a CT scan at all. Have you had a PET scan to see if all of these things (including the ovary) light up, indicating greater cellular activity? Getting a third opinion seems reasonable, if you have any concerns about the accuracy of your diagnosis. Wishing you the best-Ann
  • steved
    steved Member Posts: 834 Member
    'aggressive cancer'
    I am not sure what you basing your statement that the cancer is 'not aggressive'- I assume it was the histology report from your original biopsy. If so that simply shows how undifferentiated (abnormal) the cancer cells are which does approximate to aggressiveness- the more abnormal the cells under the microscope appear the more likely they are to pregress aggresively. However, this is an approximation and each tumour does its own thing. Mine has been very stubborn and unresponsive to a huge range of treatments over 8 years but it hasn't spread beyond the pelvis- very rarte picture but just represents what my individual tumour does, for reasons we don't really understand.

    If your tumour has gone from being seen on an MRI in one lymph node to several in a month then its behaviour is aggressive. It was probably present in those lymph nodes at the time of teh first scan but at a size too small to show up. The above poster is also right about the different types of scans- are they all MRIs or are you comparing MRI to PET scans. Also even different MRIs ar variable in quality and definition- the newer ones found at larger cenntres can sometimes have better definition (not always but could explain why you are seeing more on one than another).

    Bottom line- you feel confused and that is not acceptable. Take your questions and get answers that satisfy your confusion (though don't expect them all to be answers you like). The ovary issue obviously scares you but in truth if it is the canncer it simply represents another area of spread and is treated teh same as the othr sites.

    Hope things turn out as good as possible- my thoughts are with you.

    steve
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Helen
    Helen,
    I am so sorry that things seem to be moving fast and not making much sense. I think what others have mentioned about comparing different scans has a lot of merit. Also, I have learned that scans are not exact pictures of what is going on in the body. They give an indication and even just the reading of them by another person can give a different outcome. I have found that unnerving but after reading reports on over 15 scans for **** I can see that the scans are kind of good estimates with considerable margin of error. I wish I could be more reassuring. It is good that you are pursuing another opinion since you are not comfortable with the information you have thus far.
    One thing to keep in mind is that Sloan is highly regarded in the CC/RC world. That does not mean you shouldn't look for someone you are more comfortable with, it just means they have seen a lot and many people go to them because they consider them to be among the best.
    My prayers go with you.

    Aloha,
    Kathleen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    steved said:

    'aggressive cancer'
    I am not sure what you basing your statement that the cancer is 'not aggressive'- I assume it was the histology report from your original biopsy. If so that simply shows how undifferentiated (abnormal) the cancer cells are which does approximate to aggressiveness- the more abnormal the cells under the microscope appear the more likely they are to pregress aggresively. However, this is an approximation and each tumour does its own thing. Mine has been very stubborn and unresponsive to a huge range of treatments over 8 years but it hasn't spread beyond the pelvis- very rarte picture but just represents what my individual tumour does, for reasons we don't really understand.

    If your tumour has gone from being seen on an MRI in one lymph node to several in a month then its behaviour is aggressive. It was probably present in those lymph nodes at the time of teh first scan but at a size too small to show up. The above poster is also right about the different types of scans- are they all MRIs or are you comparing MRI to PET scans. Also even different MRIs ar variable in quality and definition- the newer ones found at larger cenntres can sometimes have better definition (not always but could explain why you are seeing more on one than another).

    Bottom line- you feel confused and that is not acceptable. Take your questions and get answers that satisfy your confusion (though don't expect them all to be answers you like). The ovary issue obviously scares you but in truth if it is the canncer it simply represents another area of spread and is treated teh same as the othr sites.

    Hope things turn out as good as possible- my thoughts are with you.

    steve

    repeat
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    I reall dont understand the
    I reall dont understand the long wait for surgery. Especially if it is moving at a fast rate. I have had 4 major surgeries and never waited more than 6 weeks.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    scan discrepancies
    Occasionally others at CSN have cited substantial discrepancies between their MRI and CT scans, like even one totally negative and the other clearly not.

    In my wife's case, there was an apparent discrepancy between the CT scans and the seemingly doubled physical volume at her 2nd surgery, scans done 7 wk (CT) - 4 wks (PET/CT) earlier, and read by at least four radiologists. Post op, the surgeon was staining his britches over the size (and large number of nodes) difference, that (might) imply rapid growth, both pre and post-op. I was less worried because CA19-9 had declined 65% and CEA was flat in the month running up to surgery with improved chemo, with an aggressive antimetastasis plan in place all along.

    It's been important to keep our head. Discrepancies often reign and it takes extra effort to get in front of them. We frequently take a breath, read, and Think. In a tissue biomarker version of Russian roulette, my wife has at least 4-5 live cartridges. Although we do more, the LEF protocol with cimetidine, COX2 inhibitors and several others have been an extremely important adjunct to continuous every day chemo, right through surgery. I am fairly optimistic that we will remove the last old CRC nodules when they show their true faces.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    tanstaafl said:

    scan discrepancies
    Occasionally others at CSN have cited substantial discrepancies between their MRI and CT scans, like even one totally negative and the other clearly not.

    In my wife's case, there was an apparent discrepancy between the CT scans and the seemingly doubled physical volume at her 2nd surgery, scans done 7 wk (CT) - 4 wks (PET/CT) earlier, and read by at least four radiologists. Post op, the surgeon was staining his britches over the size (and large number of nodes) difference, that (might) imply rapid growth, both pre and post-op. I was less worried because CA19-9 had declined 65% and CEA was flat in the month running up to surgery with improved chemo, with an aggressive antimetastasis plan in place all along.

    It's been important to keep our head. Discrepancies often reign and it takes extra effort to get in front of them. We frequently take a breath, read, and Think. In a tissue biomarker version of Russian roulette, my wife has at least 4-5 live cartridges. Although we do more, the LEF protocol with cimetidine, COX2 inhibitors and several others have been an extremely important adjunct to continuous every day chemo, right through surgery. I am fairly optimistic that we will remove the last old CRC nodules when they show their true faces.

    Helen, you're saying
    Helen, you're saying they're seeing spots on lymph nodes?? I'm not understanding this. I think (someone is gonna correct me if I am wrong) when they're talking about lymph nodes I think typically what they see is the whole lymph node enlarged. I don't think scans are detailed enough to see spots on lymph nodes. I think CT scans only pick up something over a certain size. Did the scan report mention something like "there are several lymph nodes measuring so many mm. in size. On my scans they mention the actual size of the lymph nodes they are watching. They compare them from the size on the previous scan to the size on the recent scan....and comment if they see any difference in size.
  • tommycat
    tommycat Member Posts: 790 Member
    It couldn't hurt to get a
    It couldn't hurt to get a FRESH pair of eyes to look at you and your scans, and it sounds like it would give you some clarity and peace of mind.
    I too had to go into another system to get something checked out and, voila!, the new doctor saw the problem, without the unsaid hierarchy/territorial problems attached to the first hospital doctors.
    If your insurance will pay for it, do it.
    Take care~and big hugs!
  • son of hal
    son of hal Member Posts: 117
    Hi Helen, there are some
    Hi Helen, there are some confusing statements here and I know you are feeling alot of pressure right now but as crazy as it may seem, you have to relax and take a breath. First, I agree with Steve in that the histology report from the tumor biopsy will give them and you the best indication whether it is agressive or not. Second, I agree with Smokey in that scans are missleading and lack details so they use measurements to track things leading to my question, have they mentioned doing a biopsy of the lymph nodes to confirm what the scans indicate? I had two sepperate lymph node biopsies (one in the groin and one in the axilla) several months apart because they were enlarged on scans. They were both negative and remain a mystery why they were enlarged. Everyone is giving good advise and you should mention any of this to your docs (it lets them know your on top of things). That being said, depending on how agressive it really is they will usually choose to shrink any tumor before removing it (unless it's size is a threat for obstruction). I personally waited over a year for surgery for my stage two rectal tumor that also bled everyday. Also, you should realize that most specialists know each other in the same area and as professionals they are not likely to bad mouth one another or say one made a mistake (short of obvious malpractice) regardless of their true feelings.
    It seems you are making good decisions and are staying proactive and that alone will boost your chances of long term survival over someone that just floats along. Keep up the good fight.
    Take care, CJ
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    tanstaafl said:

    scan discrepancies
    Occasionally others at CSN have cited substantial discrepancies between their MRI and CT scans, like even one totally negative and the other clearly not.

    In my wife's case, there was an apparent discrepancy between the CT scans and the seemingly doubled physical volume at her 2nd surgery, scans done 7 wk (CT) - 4 wks (PET/CT) earlier, and read by at least four radiologists. Post op, the surgeon was staining his britches over the size (and large number of nodes) difference, that (might) imply rapid growth, both pre and post-op. I was less worried because CA19-9 had declined 65% and CEA was flat in the month running up to surgery with improved chemo, with an aggressive antimetastasis plan in place all along.

    It's been important to keep our head. Discrepancies often reign and it takes extra effort to get in front of them. We frequently take a breath, read, and Think. In a tissue biomarker version of Russian roulette, my wife has at least 4-5 live cartridges. Although we do more, the LEF protocol with cimetidine, COX2 inhibitors and several others have been an extremely important adjunct to continuous every day chemo, right through surgery. I am fairly optimistic that we will remove the last old CRC nodules when they show their true faces.

    Just wanted to mention
    that one of the "big guns" in CRC research here in Seattle (Dr. Edward Lin) is using Celebrex (a cox2 inhibitor) along with Xeloda and getting good results. He also now uses CA19-9 on a regular basis. After reading your posts quite a while back about these things, I asked my oncologist, who is also something of a big gun here, and he had never heard of them. You've been ahead of the pack, Tanstaafl, so congratulations! Ann
  • dmj101
    dmj101 Member Posts: 527 Member
    WOW
    I am so sorry Helen, I am glad you are getting another opinion.. I wish we had the answers... but I guess all of our journey's are different but similar is some ways.
    I would have to say what you are experiencing sounds like it should be labeled agressive. I never had any bleeding or lymph node action so I can only imagine where your mind must be traveling I know where my own would be going..
    It is very unnerving when you feel you aren't getting a clear picture of what is going on. I had that feeliing when these mets I am fighting now were found. I am sure the chemo and waiting is see if they can stabalize what is occurring prior to opening you up and finding unknowns.. I will be praying and sending you prayers and positive energy to get thru this successfully... Stick to your guns girl - get the answers you need and don't stop till you are satisfied..
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Hope it goes well
    Good luck with everything, dear.

    *hugs*
    Gail
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Are they comparing the same type of scans?
    Is the recent MRI being compared to an earlier MRI? I ask because I have found in my own experience that different scans have different results, so comparing, say, a PET to a CT scan (this was my experience) may yield very different results. I had cancer that showed up clearly on a PET and MRI, but not on a CT scan at all. Have you had a PET scan to see if all of these things (including the ovary) light up, indicating greater cellular activity? Getting a third opinion seems reasonable, if you have any concerns about the accuracy of your diagnosis. Wishing you the best-Ann

    Hi Ann, At Northshore I had
    Hi Ann, At Northshore I had CT, MRI, PET. PET showed one spot on my ovary suspected to be ovulation (not yet confirmed either way, have to wait for surgery), otherwise clear except the original site. Colonoscopy saw possible spot on my lymph, cleared. MRI was completely clear. Everything was just completely clear. Now only 6 weeks (literally) later and MRI at Sloan shows my lymphs are full of spots? The original tumor grew back in just 9 weeks and is still growing. Then in 6 weeks I developed all these spots on my rectal lymphs and one pelvice. So in 15 weeks I went from possilby cured to what? I'm not even sure. I don't know what to make of any of this, I can't seem to find a precedent. Most cancers take 3 months to come back and even then it's usually not visible to the eye. Generally they take two years. I get the whole there is no norm thing but what if this thing keeps going at this rate? I just hope it responds to the treatment and what if the minute we stop treatment it comes back. This is all so confusing. I don't want to be one of those people that gets diagnosed and dies within a year. It just seems to be moving so fast. I wish I could find a precedent so I could find relief from the confusion.
  • Helen321
    Helen321 Member Posts: 1,459 Member
    steved said:

    'aggressive cancer'
    I am not sure what you basing your statement that the cancer is 'not aggressive'- I assume it was the histology report from your original biopsy. If so that simply shows how undifferentiated (abnormal) the cancer cells are which does approximate to aggressiveness- the more abnormal the cells under the microscope appear the more likely they are to pregress aggresively. However, this is an approximation and each tumour does its own thing. Mine has been very stubborn and unresponsive to a huge range of treatments over 8 years but it hasn't spread beyond the pelvis- very rarte picture but just represents what my individual tumour does, for reasons we don't really understand.

    If your tumour has gone from being seen on an MRI in one lymph node to several in a month then its behaviour is aggressive. It was probably present in those lymph nodes at the time of teh first scan but at a size too small to show up. The above poster is also right about the different types of scans- are they all MRIs or are you comparing MRI to PET scans. Also even different MRIs ar variable in quality and definition- the newer ones found at larger cenntres can sometimes have better definition (not always but could explain why you are seeing more on one than another).

    Bottom line- you feel confused and that is not acceptable. Take your questions and get answers that satisfy your confusion (though don't expect them all to be answers you like). The ovary issue obviously scares you but in truth if it is the canncer it simply represents another area of spread and is treated teh same as the othr sites.

    Hope things turn out as good as possible- my thoughts are with you.

    steve

    Hi Steve, Do you think that
    Hi Steve, Do you think that the MRI machine that was being used simply couldn't pick up the spots? That would be a relief. That's exactly what I want to know, did someone screw up or should I be worried about the rate of spread. Let's put this on the table and be frank. I don't care if the other doctor missed something. I do care if this is spreading quickly. I was referring to "type" of cancer. My understanding is that there are three types of rectal cancer. Most are andenocarcinomas, which is what I have been told this is. This is generally considered a slow growing cancer. According to the original diagnosis which has not changed, I have adenocarcinoma and we've tacked on that it is acting very aggressively. My concern is that this could be something like a neuroendocrine tumor (I don't actually know if it is a possibility, I've just started researching) that was misdiagnosed and is still being misdiagnosed. If the MRI at the first hospital missed a whole bunch of spots on my lymphs, how do I know that the slides were not misread? Did Sloan look at the slides? No one has said, I looked at your slides. Each doctor has said, I read the reports. I want Sloan to do their own slides, let's get this moving because in 15 weeks it has grown back, grown larger and moved into a whole bunch of lymph nodes and is now going to the pelvic lymph nodes. I'm going Monday for chemo so I'm going to say enough, none of this send in a resident to take my stats (two of them have already missed very important steps in relaying the stats to the doctor, luckily Leena was nice enough to email me that I need to say something and I caught on that I have to do the legwork, not wait for them to do it) and enough of this doctor calling, that doctor calling. I've had 4 doctors call me in one week and I ended up more confused. I want all 4 doctors to discuss and assign one doctor to do the talking.
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Helen
    Helen,
    I am so sorry that things seem to be moving fast and not making much sense. I think what others have mentioned about comparing different scans has a lot of merit. Also, I have learned that scans are not exact pictures of what is going on in the body. They give an indication and even just the reading of them by another person can give a different outcome. I have found that unnerving but after reading reports on over 15 scans for **** I can see that the scans are kind of good estimates with considerable margin of error. I wish I could be more reassuring. It is good that you are pursuing another opinion since you are not comfortable with the information you have thus far.
    One thing to keep in mind is that Sloan is highly regarded in the CC/RC world. That does not mean you shouldn't look for someone you are more comfortable with, it just means they have seen a lot and many people go to them because they consider them to be among the best.
    My prayers go with you.

    Aloha,
    Kathleen

    Great, that's what I needed
    Great, that's what I needed to know. This tells me that I need to ask for a new biopsy done by Sloan. If one person can misread a scan, one can misread a slide. We're using old reports from Northshore. I'm going to request that all tests/slides be done over including the PET scan.
  • Helen321
    Helen321 Member Posts: 1,459 Member
    tanstaafl said:

    scan discrepancies
    Occasionally others at CSN have cited substantial discrepancies between their MRI and CT scans, like even one totally negative and the other clearly not.

    In my wife's case, there was an apparent discrepancy between the CT scans and the seemingly doubled physical volume at her 2nd surgery, scans done 7 wk (CT) - 4 wks (PET/CT) earlier, and read by at least four radiologists. Post op, the surgeon was staining his britches over the size (and large number of nodes) difference, that (might) imply rapid growth, both pre and post-op. I was less worried because CA19-9 had declined 65% and CEA was flat in the month running up to surgery with improved chemo, with an aggressive antimetastasis plan in place all along.

    It's been important to keep our head. Discrepancies often reign and it takes extra effort to get in front of them. We frequently take a breath, read, and Think. In a tissue biomarker version of Russian roulette, my wife has at least 4-5 live cartridges. Although we do more, the LEF protocol with cimetidine, COX2 inhibitors and several others have been an extremely important adjunct to continuous every day chemo, right through surgery. I am fairly optimistic that we will remove the last old CRC nodules when they show their true faces.

    Thanks. So basically this
    Thanks. So basically this is probably not new is the gist I'm getting. This was probably not on the Northshore scan.
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Hi Helen, there are some
    Hi Helen, there are some confusing statements here and I know you are feeling alot of pressure right now but as crazy as it may seem, you have to relax and take a breath. First, I agree with Steve in that the histology report from the tumor biopsy will give them and you the best indication whether it is agressive or not. Second, I agree with Smokey in that scans are missleading and lack details so they use measurements to track things leading to my question, have they mentioned doing a biopsy of the lymph nodes to confirm what the scans indicate? I had two sepperate lymph node biopsies (one in the groin and one in the axilla) several months apart because they were enlarged on scans. They were both negative and remain a mystery why they were enlarged. Everyone is giving good advise and you should mention any of this to your docs (it lets them know your on top of things). That being said, depending on how agressive it really is they will usually choose to shrink any tumor before removing it (unless it's size is a threat for obstruction). I personally waited over a year for surgery for my stage two rectal tumor that also bled everyday. Also, you should realize that most specialists know each other in the same area and as professionals they are not likely to bad mouth one another or say one made a mistake (short of obvious malpractice) regardless of their true feelings.
    It seems you are making good decisions and are staying proactive and that alone will boost your chances of long term survival over someone that just floats along. Keep up the good fight.
    Take care, CJ

    Hi CJ no to the biopsy.
    Hi CJ no to the biopsy. Thank you for that suggestion! That is what I will now be requesting Monday. Let's do all slides over and biopsy the lymph nodes which apparently is pretty much all of them in my rectal area according to the last phone call. I will get the report on Monday. Okay so scans don't necessarily have merit (well isn't that just peachy) and biopsy is the way to go. This is exactly what I need to know! I wish they would tell you this stuff when they call. Why aren't the doctors suggesting a biopsy? I mean if I didn't have this board and the personality I was born with to ask questions, then I would pretty much not live through this if I had to depend on these doctors. If you know I should get a biopsy, why don't the doctors ecommend it immediately! We just changed my chemo to something else in one phone call, without even as much as a physical exam. I'm also going to ask exactly who has looked at my slides. Have any of them even checked the slides? They all keep saying "I read the reports".
  • Helen321
    Helen321 Member Posts: 1,459 Member
    dmj101 said:

    WOW
    I am so sorry Helen, I am glad you are getting another opinion.. I wish we had the answers... but I guess all of our journey's are different but similar is some ways.
    I would have to say what you are experiencing sounds like it should be labeled agressive. I never had any bleeding or lymph node action so I can only imagine where your mind must be traveling I know where my own would be going..
    It is very unnerving when you feel you aren't getting a clear picture of what is going on. I had that feeliing when these mets I am fighting now were found. I am sure the chemo and waiting is see if they can stabalize what is occurring prior to opening you up and finding unknowns.. I will be praying and sending you prayers and positive energy to get thru this successfully... Stick to your guns girl - get the answers you need and don't stop till you are satisfied..

    Thanks, it's very
    Thanks, it's very frustrating. You can't just call someone on a Friday afternoon and say oh yeah hey these scans were suddenly awful, we'll just change your chemo. And then when I ask well why, not have an answer and not suggest a solution. I'm going with CJs, ask for a biopsy. Bingo! Excellent suggestion, I really have to start to think like that. Thanks for the prayers and the good ju ju. I could sure use it. I went out and sort of had a good time tonight at my brother in laws 50th birthday but not really because I kept thinking okay move this along, I need Monday to be here already so I can get answers.