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a few questions and thoughts...

lisa42
lisa42 Member Posts: 3,625
edited March 2014 in Colorectal Cancer #1
Hi,

A few different thoughts and questions...

I just found out I have more in my lungs than I thought I did. Two scans ago prior to starting chemo end of August, the radiologist report showed just a 8 mm tumor, a 1 cm hilar node, and "several tiny subcentimeter nodes around the 8 mm tumor". Next scan, just last week a different radiologist reported that my 8 mm shrunk down to 5 mm, the tiny subcentimeter stuff was not visible on this scan, the 1 cm hilar node remained stable, BUT it talked about two more tumors that I never knew I had, which must have been visible on my prior scan but that particular radiologist didn't mention it in the report- this time the report also read, "also compared to the last scan, the 1 cm tumor in the lower right lobe remained stable and the 5 mm tumor in the lower left lobe shrunk slightly. I never even knew I had these! The last report never even mentioned them. My oncologist said some radiologists only report things over 1 cm. So how do we ever rely on these reports?! All of my stuff (thank goodness) is under 1 cm- does that mean, according to this logic, that none of it should be reported?! Do some of your oncologists look the scans over themselves, or do they just rely on the report they receive as mine apparently does? I'm realizing that I can't base my progress just on what these CT and/or PET scan reports read!

I'm in the process of getting insurance approval to see another oncologist for another opinion based on this and a few other concerns (one being that he never sought out kras testing for me before putting me on Erbitux- I'm now awaiting results of it because a surgeon of mine requested the testing for me)- I wonder what most oncologists do about reading and interpreting scans & how they find out how their patients have been responding to treatment.

Another question- have any of you had lung surgery (or cyberknife) for removal of mets- possibly any including lymph nodes (a hilar node, specifically- I have a 1 cm hilar node affected in my upper right lung lobe). My oncologist said if, after another 6 week round of chemo, if everything isn't gone, then we can do cyberknife (an exact radiation w/ gold beads directing the beam). He had recommended cyberknife for my liver mets back before I decided on surgery- I'm glad I had the surgery even though it was obviously more invasive (three additional tumors were discovered during surgery that had never been seen on scans before- they would have been missed had I gone w/ cyberknife). I'm wondering now if surgery would be the better route for the lungs or if cyberknife would be best. I'm afraid of having my ribs cracked open for lung surgery- not sure if it could be done without the ribs being spread open or not.

Any input on any of these thoughts or questions of mine would be appreciated!
Lisa

Comments

  • pamness
    pamness Member Posts: 515
    What my oncologist does.
    My oncologist gets my scan results from the radiologists that read them. He then has my radiation oncologist look at them. Then my oncologist looks at them himself. The results that he gives to me are the results that they have all looked at and agreed to. During chemo, I was my oncologist every two weeks or more if necessary. He or his nurse practictioner were always available for questions. Now that I am done with treatment I see him every three months. Again, questions are always answered.

    I am being treated at Mass General.

    Hope this helps,

    Pam
  • jenjerandkatesmom
    jenjerandkatesmom Member Posts: 37
    Scans and Lung surgery
    I have had a similar experience regarding scan results. It seems that what is reported to me is by the discretion of the radiologists and/or oncologist. I've received such confusing information this way and when I asked the oncologist why he didn't tell me about particular findings, he says they were not found to be significant or conclusive. (Until there is a change..then all of a sudden they are significant). At that point I'm angry that I wasn't told. I don't think that doctors realize that what this does is undermine the trust that we place in them to be honest with us. It is important to let your doctor know how you feel about this or things won't change, but do it kindly. If you otherwise have a great physician, then you want to protect that good relationship.
    Regarding the lung surgery, I just had 2 nodules, 5 and 7 mm in size removed from my left lower lobe about a month ago. The surgeon did this via thoracoscopy. I had 3 small incisions and one of the nodules needed needle localization so that the surgeon could find it with the scope. I had to stay in the hospital overnight but went back to work in a week. I needed pain pills for 1 day and then switched to Tylenol. My surgeon also does Cyberknife but he said he could get to the nodules with the scope. I think it has to do with the location that determines how they are able to get to them. Might be a good idea to get a second opinion just for your own peace of mind. Good luck with your decision!
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Hi Lisa
    Well, in answer to your question about the oncologist and the information from the scans... I know my oncologist gets a report from the radiologist who did the scan(s), as well, she goes over them herself and has her own opinions and since I have a lung surgeon involved on the team as well, he goes over them and the three of them get together to see if they all agree or should they be looking at other possibilities.

    It's like this recent CAT and PET scans of mine. I have a 14mm tumour (which is the largest) and 6 under 6mm spots that they aren't exactly sure what they are. 2 of them they think are just scarring from when I had pneumonia some years back. 2 of them have grown slightly in 6 months. 1 has shown no change and 1 is new since the scans 6 months ago.

    The surgeon recommended 6 rounds of chemo, but my oncologist (who is also a chemotherapist) said that she would like to get another opinion... so she is sending my CAT and PET scans to a radiologist at another hospital who is a specialist in "ablation" in the lungs to see if he thinks I would benefit from this and if it is something that would work in my case. (Ablation is where the radiologist goes into the lung with a needle, with the guidance of a CAT scan, and burns out these very small nodules, whether they are cancer or not... they'll just eliminate them). If he doesn't think this would work on me, then they will discuss the chemo route.

    So I feel very good that they all have opinions of what they think will work, but they then get together and work out the opinions and come up with a plan they all agree would be in my best interests.

    I haven't had lung surgery yet, so I can't help you with that question. I know that I will be having it at some point to surgically remove the 14mm tumour. But, I'll cross that bridge when we get to it. I know when that time comes, my oncologist, surgeon and myself will go over the pros/cons or if there are any other options.

    Hugggggs,

    Cheryl
  • lisa42
    lisa42 Member Posts: 3,625
    Thanks
    Thanks so much for your input. It greatly helps me to decide what I've been thinking all along- I really need to change oncologists to one who will work together with my surgeons and specialists- my current one has been resistant to even talking to them.
    I just found out today two things- 1)My insurance gave approval for me to go see this other oncologist for a 2nd opinion/consultation, and 2) I just got back positive results for the kras genetic mutation which means the treatment my current oncologist has had me on for the past 7 weeks (Erbitux) has been absolutely pointless. Wow- lots to digest today- I will be anxiously looking for more answers. Unfortunately, the quickest I can get an appt w/ the new oncologist will be Nov. 13. I will definitely be speaking to my current oncologist in the meantime!
    Lisa
  • taraHK
    taraHK Member Posts: 1,952
    lung surgery
    I have had lung surgery three times (I wish it weren't so!). Each time to remove a solitary met. It ain't sooo bad. If it is possible to have laporoscopy, that is good -- it is less invasive and recovery is a little easier. Also, if they can do a wedge resection (i.e. remove a small portion of lung) then that is better than removal of a whole lobe. (But I have done all these things! Conventional and laporoscopy, wedge and lobe....). It sounds scarier than it is. Every time, I was up and walking within 24 hours, and home and walking around the track within a week. The ribs are a little ouchy for a while. But, with decent pain control it is OK. I haven't had a lymph (hilar) node affected, so cannot comment on that.

    Last time, I looked into the possibility of cyberknife. My understanding, from the research I did and from the docs I talked to (4) was that if the lesions are amenable to surgery (and the patient is amenable too!), that surgery is the first choice. But there may be different opinions on this....

    Re: scans -- my oncologist always looks at the scans himself -- in front of me (i.e. with me)

    Best wishes,
    Tara