Jump to content

Moms oncology follow-up today


mandycat

Recommended Posts

Hi all!

I accompanied my mom to her follow-up appt. today with the onc, first one since chemo completion in Feb. (she finished chemo and is now getting radiation). She has a cough presumably from radiation starting to irritate her throat(?) I asked about an MRI and his response to me was he prefers CTs (although she never had one of her head so far). Also his protocol doesn't include a head MRI and I quote "unless it's small cell because it likes to metastasize to the brain". I may be seeming paranoid but doesn't nsclc 'like to go there' too?

Well, he did blood work and white counts were a little low, assuming side effect of radiation. He sent out for CMP to check on kidneys too. I have a hard time relaxing about things so I obtained her path reports, chest x-rays and PET scan will try to get CT scans soon. PET scan showed "suspicious" activity in her right hilar and aorticopulmonary window as well as a focal area of bronchiectasis in the right upper lobe that were also seen on CT. First time I've heard of these particular findings :(

Thanks for letting me get that out,

Blessings to you,

Michele

Link to comment
Share on other sites

Dad's oncologist doesn't seem really concerned about doing the MRI of his brain either and I find it really troublesome because he has so many headaches. I have read so much about it being part of the evaluation for Avastin. I got his next appointment scheduled when my mom will be in town, so I am sure she will fully address the issue.

It is really terrifying the first time you read those scan reports. We found out dad has all sorts of issues that they found incidentally during the scans such as hernias, etc. Fortunately, none of those things necessarily need to be treated at this point. It mostly just added to the already lengthy report. I really wonder if knowing all the little details of the reports are entirely useful in some situations. It is a double edged sword in my opinion.

Link to comment
Share on other sites

Thank you for your reply,

It seems part of the work-up for later stage nsclc includes an MRI, especially when there are symptoms. The onc has his own agenda. Finding out all of the other health concerns worries me a little, but my focus is getting rid of her menace. Early detection seems to be of utmost importance for reigning in the beast before it takes over. Sometimes I am strong and other times I worry so much about my mom. I agree it is a double edged sword, knowing too little vs. knowing too much. I did voice my concern to the onc to no avail. Since her dx in Aug of '07 we haven't had any follow-up images in any form and I want reassurance, am I being proactive or a worry wart? I hope your dad gets his scan and it is o.k. The headaches concern me too.

Blessings to all,

Michele

Link to comment
Share on other sites

I am really confused. By your profile it appears your mom has only had two scans in the last eight months. Is that correct? I find that shocking becausee dad has had at least 5 followup scans sine treatment began and has one more next week. I think if that is the case then you certainly have a right to be troubled by the lack of information. How are they monitoring the effectiveness of treatment?

I wish that there was some measure by which we could define a good oncologist versus a bad oncologist. I don't want to feel like I should have to be questioning how an oncologist is doing his or her job, but it would be irresponsible not to I suppose.

Link to comment
Share on other sites

Thank you again for your reply,

We haven't had ANY tests to monitor progress. There have been no follow-up scans of any sort. The treatment planning CTs are nondiagnostic as I had asked, they are only used for marking the radiation field. PFT/VQ scans don't address lung Ca only lung capacity. This is what has been concerning me so much. I honestly like her oncologist he's a very nice man but when we discuss her situation, he says very little and answers only when I ask very specific questions. I am clueless on her progress, if any :? . She finished four rounds of chemo in Feb. and on to radiation after a six week "rest". No x-rays, scans etc. have been taken, just blood work assessing the usual RBC/WBC counts, CMP(kidney & liver function).

I came to this site because I was becoming depressed. I have been by my mom's side since she was diagnosed, the rest of my family has gone on with life as usual. It has been difficult. My mom doesn't like to talk about her cancer, certainly wants no sympathy, just does what the doctors say, no questions. All of this puts me in a weird position as her advocate. I have not been able to understand why she hasn't had any follow-up scans so I asked. Unfortunately the onc. told me he will be doing a CT a few months after she finishes radiation, that means her first scan will be in August--her one year anniversary (what??). After reading so many profiles here, I am even more concerned. I have hope knowing there are so many survivors, but I somehow feel she is being neglected without work-ups. There are stones left unturned and I am uncomfortable with that. When I am in the onc's office asking questions I feel like a kid in the principals office or something. It's almost as if we are not talking about a life or death issue, just the flu and I am over-reacting. Not sure where to go from here...

I'm glad you understand, thanks

Michele :)

Link to comment
Share on other sites

Thank you again for your reply,

We haven't had ANY tests to monitor progress. There have been no follow-up scans of any sort. The treatment planning CTs are nondiagnostic as I had asked, they are only used for marking the radiation field. PFT/VQ scans don't address lung Ca only lung capacity. This is what has been concerning me so much. I honestly like her oncologist he's a very nice man but when we discuss her situation, he says very little and answers only when I ask very specific questions. I am clueless on her progress, if any :? . She finished four rounds of chemo in Feb. and on to radiation after a six week "rest". No x-rays, scans etc. have been taken, just blood work assessing the usual RBC/WBC counts, CMP(kidney & liver function).

I came to this site because I was becoming depressed. I have been by my mom's side since she was diagnosed, the rest of my family has gone on with life as usual. It has been difficult. My mom doesn't like to talk about her cancer, certainly wants no sympathy, just does what the doctors say, no questions. All of this puts me in a weird position as her advocate. I have not been able to understand why she hasn't had any follow-up scans so I asked. Unfortunately the onc. told me he will be doing a CT a few months after she finishes radiation, that means her first scan will be in August--her one year anniversary (what??). After reading so many profiles here, I am even more concerned. I have hope knowing there are so many survivors, but I somehow feel she is being neglected without work-ups. There are stones left unturned and I am uncomfortable with that. When I am in the onc's office asking questions I feel like a kid in the principals office or something. It's almost as if we are not talking about a life or death issue, just the flu and I am over-reacting. Not sure where to go from here...

I'm glad you understand, thanks

Michele :)

Link to comment
Share on other sites

Mandycat-

Just want to put my two cents in here. No scans in a year???? I have one every 3 chemos and I have since the beginning. I would definitely wonder my your doc is allowing so much time to go by without doing scans.

Just a thought - I know you say you like this doc but if you have the LEAST doubt about whats going on - get another opinion!!!!

Good luck - please continue to be your moms advocate!!!

Hugs - Patti B

Link to comment
Share on other sites

Hi,

I can see why all of this is very concerning for you and my heart breaks at your frustration.

This wasn't our experience at all. Our oncologist went to the other extreme with PET scans every three months like clockwork, but he only did a head scan two times because there were no symptoms and my husband's cancer liked his chest. I pushed for the second head-scan because I had the same worries as you.

Maybe a second opinion is in order. I have no clue what your mother's overall health is, but is she continuing to see the lung specialist? Weaning herself off of the oxygen isn't a good thing without medical supervision and assessment. A 94% blood/oxygen level is on the low side and she needs enough oxygen to not starve her organs. My husband tried that trick too, but was seriously advised against not using his oxygen. What are they saying about this 94% level?

If she is having radiation done, she must have had another scan or an x-ray to determine where to radiate. I'm sure they aren't going to do that blind.

Sometimes the whole cancer issue is dealt with in a more benign way at the oncologist's office, because it is unnerving enough to have the diagnosis and they don't want their patients worrying so much that it makes them crazy. Other times, it is a lack of bedside manner. I don't know what the case is for your mother's doc. The nurses are often a great source of information.

Is your Dad in the picture? I hate to think you are dealing with this all on your own. We are here for you and I'm glad you found us. You need support to get through the questions and rough times. You are doing a fine job of learning Cancer 101. Oftentimes the caregiver IS the one with the knowledge and the patient doesn't always want to hear every little detail. That could be the case with your Mom.

Warm regards,

Welthy

Link to comment
Share on other sites

Thanks for replying,

My mom had radiation planning CTs, I asked the technician if any evaluation of the Ca is done, she said no-the CT is limited and used for mapping the field. No other scans after chemo to present day. Could someone please help me with second opinion initiation? Do I call another oncologist and ask for a consult appt? How do I address this to the present oncologist? If I can get my mom to agree, I believe this is the appropriate course.

She is no longer seeing the pulmonologist. No one (including the nurses or doc at time of port removal) said anything about her 94% ox saturation. Supposedly (according to online sources) this is "normal" for someone with emphysema :( I personally have felt this is too low, have encouraged her to resume oxygen but she insists she is o.k. My stepdad is there with her but having lost his previous wife to lung cancer, he prefers to stay off the side (he is convinced she is going to die). Other than that, I have found support and hope here with all of you along with guidance. Maybe a second opinion will bring answers and maybe some sleep at night for me.

Thanks always,

Michele

Link to comment
Share on other sites

Mandy,

That was another thing I found highly unusual -- the port removal. Usually those aren't yanked until further down the road. Hmmm...

You've outlined the right way to go about getting a second opinion. Find another onc, and ask that copies of everything be sent or hand carry them to the 2nd onc for review prior to her appointment. If anyone has other suggestions -- jump in. I think that's what you do.

Your poor step-father! I see where this is a very complicated issue for you. I'm so sorry, but I think your headed in the right direction. Too many concerning issues.

Welthy

Link to comment
Share on other sites

Mandy-

As Welthy said, call up another onc and set up an appointment. And please don't feel embarassed around your present doc about it - mine actually would always urge people to get a second opinion - he knew how important all this was and wanted to make sure that patients felt 100% comfortable with his decisions.

Good luck - let us know how it all goes.

Hugs - Patti B.

Link to comment
Share on other sites

Hi Mandy,

I am relatively new to all of this, but from what I have learned/read, lung cancer can spread to the brain regardless if it is sclc or nsclc. My mom is nsclc and she had 3 mets to the brain at diagnosis.

I have read of other nsclc patients who have brain mets so I really don't know if your onc has that 'fact' correct or not.

I have read of other patients whose oncologist ordered brain mri as a tool to confirm whether or not there is mets to the brain as part of the diagnostic process. And in case there is mets to the brain, at least in the case of my mom, the plan is to do this every few months.

In just these past four months, my mom has had at least two brain mri, a PET scan, bloodwork (it seems every week), I can't remember all of the tests right now, but my family and I are at a point where we expect a test of some sort a week or every other week.

I echo everyone's sentiments here, get a second opinion, better yet just get a new doctor and always get a copy of every medical record you can.

Hugs to you and your family.

Link to comment
Share on other sites

I wanted to say thanks, I agree a second opinion seems in order. You have just given me the courage to move forward. My gut has been saying the lack of any follow-up to check for progress is making me uneasy (keeping in mind I have her PET scan that showed questionable findings in the right lung as well). This is a situation where I don't think too many tests would be considered unwarranted. I have just been doubting myself and haven't wanted to "rock the boat" too much. Aw baloney! I will be talking to my mom about this tonight.

Thank you again!!!!

Michele

Link to comment
Share on other sites

Mandycat,

I fully agree with Patti B. Get another opinion, or you must change her Oncologist.

You like him, but he only gives you short answers when you ask. No, no, no, I would not allow them to do radiation without a Scan. Hurry up and be assertive. It just sounds bad to me, what they are doing to your Mom.

Renate

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...