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confused by diagnosis

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

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.

smokeyjoe
Posts: 1428
Joined: Feb 2011

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's picture
Helen321
Posts: 1409
Joined: May 2012

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's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

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.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

that is quite aggressive. For me, three months has been more than enough time for a tumor to grow from invisible to 2-3 cm in size. And there's a case over on the Colon Club, a man whose wife had something he referred to as "neuroendocrine colon cancer"...apparently that is also very fast growing. So I guess certain types of cc do fall into this pattern, although it's certainly not the norm. In my case, it didn't change the treatment plan in any way, but it does mean that I'll be getting scans on a more frequent basis than other people with the more "normal" form of cc, probably for a long time to come (if I'm lucky enough to be around for a long time!). I'm really sorry you're going through this, I know how terrifying it is, especially when it's hard to get clear answers. Hugs and strength coming your way-Ann
Edit: Just read your comment to Steve...looks like you've run into that neuroendocrine thing already, sorry for the repetition.

steved
Posts: 835
Joined: Apr 2004

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's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

repeat

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

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.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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 Dick 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

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

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.

janderson1964
Posts: 2215
Joined: Oct 2011

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's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

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
Posts: 1428
Joined: Feb 2011

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.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Thanks. So basically this is probably not new is the gist I'm getting. This was probably not on the Northshore scan.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

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!

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

I'll be checking my insurance Monday and this hierarchy thing is for the birds. I don't even care if the first doctor made an error. I have bigger problems, you know staying alive and all. I just want to move forward. Their egos are something else. And obviously all the lawsuits don't help.

son of hal
Posts: 117
Joined: Mar 2011

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

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

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".

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

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..

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

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.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Good luck with everything, dear.

*hugs*
Gail

smokeyjoe
Posts: 1428
Joined: Feb 2011

When they get to surgery they'll probably remove the lymph nodes....I think probably chemo. and radiation will do a number on those and hopefully kill off the cancerous nodes, and shrink your tumor. I know you want to move this along...I've seen many times people write on here that this isn't a race it's a marathon. Look at Craig and some others, they've been in the battle for many many years...there is a new normal that takes over your life with this disease. Keep us posted as to what you find out.

steved
Posts: 835
Joined: Apr 2004

I am concerned by the range of different advise given above- most of which has merit in its own right but all together can actuall add to the confusion you feel (and I iunclude my own advise amongst that). At risk of adding to the confusion can a I make afew clear suggestions-

Take all advise here as well intended but coming from lay people with lived experience of this. In this way it is hugely valuable but does not replace or override the expertise of your docs. They know more about you, your cancer and situation than any of us and ultimately you must trust them to make the right decisions.

Specific suggestions here are only suggestions- not definitive answers of what should happen eg biopsy advise (it is likely they don't need to put you through another biopsy which is unpleasant and carries risks- they may just need to look at the slides of the first biopsy. Also biopsying lymph nodes is very technical and risky and rarely indicated so may not be the right thing unless your team thinks its necessary).

Simply take a clear list of your questions that you need answered to feel confident and in control of your situation. Do not go with the intention of demanding test/ interventions you don't really know if you need. You need clarity and trust in your team and that comes from good communication on both sides- you communicating what you need to know and tehm providing sufficient answers to satisfy you.

I hope things go well

steve

omrhill
Posts: 125
Joined: May 2012

Steve - this is a very wise post, and your words are applicable to all of us as we handle our own illnesses and treatment plans. Thank you.
Robin

Coppercent
Posts: 158
Joined: Jan 2012

I think the one thing we all have to keep in mind that if "Joe", "Jonnie", and "Julie" have rectal cancer they may or may not all get the same treatment. I hear a lot on here that well if it is rectal cancer then the treatment should be this or that. But that is definitely not the case. There are so many factors in why our doctors choose our treatments. When my doctor and I were deciding on my last treatment plan he went over all the tiny details in my case that he looked at and honestly I was pretty amazed at the information he was presenting to me. I searched long and hard before choosing my oncologist and I feel I have chosen the best one for me. Now does that mean he is the best for everyone, probably not. We all require different things. But I am very confident in his ability to make the right decistion for my treatment plans. That being said, I still want the reasoning behind why he is making those decisions but with my oncologist he automatically tells me why he is doing what he is doing but in the end, he tells me it is my decision.
I know I was the most annoying person when I was trying to choose the right oncologist. I talked to several of his patients and talked with other medical professionals and asked if this was your Mom which doctor would you recommend. After many recommendations for the same doctor I thought well he must be doing something right. At my first appointment with him I interviewed him like I was interviewing someone I was hiring for job. It was just as important to him to give me quality of life as it was to cure the cancer.
If you are confident in your oncologist don't second guess his decision because of things you hear on the cancer blogs. Everyone is an individual and is different and requires individual treatment plans. I ask my oncologist about different things I hear on here and he always gives me his opinion then refers me to the studies on the things I have asked about. Because in his thinking, the final decision is always mine. There is nothing I have brought up that he has not heard about before.
Hope you do well with your first chemo.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

My oncologist came with my surgeon. I was just going in for surgery, had no idea I'd even need an oncologist. I don't even know exactly what stage I'm technically in now with the new lymph discovery, if they were there before or are new. If I am even diagnosed right because the surgeon day one said I think you've been misdiagnosed and just when they called me to tell me about the lymphs, the whole team went on vacation. So I'm in limbo until Monday and no one at the hospital will answer any of these questions, they only handle emergencies. I not only don't have faith in the team, I at this point don't have faith in the hospital. I'm going to get a patient advocate tomorrow. That is what I decided is the best course of helping myself. Have someone in the know help me maneuver this hospital.

First infusion had a reaction in my arm, we let the swelling go down and I got to finish. Getting a port. Pills I'm doing okay so far, just red face and immediate sensitivity to sun, a little discomfort in the mouth. I watered my plants after the sun went down and forgot and drank something cold. Won't do that again.

Thanks for the advice.

Minnesotagirl
Posts: 141
Joined: Sep 2011

Hi Helen,

Just wanted to say I am supporting you. I was diagnosed with Stage 3 rectal cancer in Sept., 2010. I had a port placed in October, started radiation and chemo in October. I did not have removal of my rectal cancer and lymph nodes until end of January, 2011. I had 3 lymph nodes involved out of the 29 that the surgeon took. Following surgery and 6 week healing period, I started up chemo again until end of June, 2011. The lesions on my liver are hemangioma's which is non-cancerous so yes, sometimes things look suspiscious but turn out to be o.k. I am considered a Stage III rectal cancer survivor now ( I have my next scan end of July, 2012.

Keep your head up. Breath deep and follow what your doctor's tell you. Rectal cancer is a tough one but so are you! Keep up your fight but keep your energy to fight the cancer not the Drs...I went to a national cancer center for my surgery and follow-up care. Mayo Hospital in Rochester, Minnesota. Be proactive in your own health but make sure you listen well...hard to take in all the information at once...

Prayers to you Helen and remember you can beat this beast!!!!

"Minnesotagirl"

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