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Misunderstanding about scans

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

I was a bit hasty when I posted the scans were fine. I had not spoken to the oncologist, my husband spoke with her and gave me the news when I got home that my scans were fine but I needed to follow up with my Pulmonologist about the spot on the bottom of my right lung. I didn't mention that part to you because I have been in his care for years and have an appointment on Monday already made.

MSK has a new patient portal where you can look at your scan reports so instead of calling my Oncologist myself, taking more of her time, I waited for the report to be posted. I found the spot had more than doubled in size (1.2 centimeters to 3.8)  and there were other things that they say in the report were "unchanged" that are there in this report, but these things were in none of the other reports. My first scan in June of 2011 said "Paramediastinal consolidation in the right lower lobe. Differential includes atelectasis, pneumonia and tumor." But said nothing about Thoracic Nodes like this one or anything about the left lung which says: "1 cm right hiliar node is unchanged." and "Unchanged 0.5 cm let upper lobe peri fissural ground glass nodule."  How can it be unchanged when it was never cited as even being there before?

I will see the doctor tomorrow but naturally with my "say whah?. . . . " nature have been researching once again the correlation between deafness and metastisis and guess what. I found something called Paraneoplastic syndrome which they say is consistent with an autoimmune etiology that is one of the causes of the sudden hearing loss with extreme vertigo like I suffered. They gave as an example a woman with an oat cell carcinoma of the lung who had SSNHL like me and said lung cancer is often the cause.

My Pulmonologist had no idea I was getting a CT scan. He also reviewed the other scans so I am looking forward to seeing what he saw on the disc they provided him.

We have to advocate for ourselves, my dear friends. I resent how my health seems to be devouring my mind but I want my health back! So practically all I am doing is eating, sleeping and researching again. There is still no hope of getting my hearing back from any research available other than a few "healers" on the internet.

I also saw a new Psychologist at MSK who referred me to a Psychiatrist. She has diagnosed me with depression. I would say this is very true.

Sorry for my pity pot stuff, but it was another up and down. For a few days I believed everything was fine.

Fondly,

sandy

lp1964's picture
lp1964
Posts: 856
Joined: Jun 2013

One of the wonderful things about being connected like this that we can share and feel each other's frustrations, fear, confusion, pain and happiness, hope, relief and gratitude. This is how I feel for you right now. I'm there with you trying to share the burden. As hard as it is take your time until you can talk to your doctors and clear things up. Get busy with something and try to get your mind off of this problem. At the same time do some research and prepare for that  consultation. We saw it here many times that you have to consider other patients' experiences and tips to come to the right decision. This is just reality of life. In many other country they don't share any information with you and won't allow you to take part in the decision making process. Here in this amazing country at least you have the rights to these, but that comes with responsibility, work, risk and communication with others. We have to do our share.

I keep you in my heart and thoughts until next time and wish you the best possible outcome.

Laz

mp327's picture
mp327
Posts: 2973
Joined: Jan 2010

I'm sorry that perhaps things don't seem as rosy as they first did, but the things noted on your recent scan may not be sinister, so I hope you'll remain hopeful and positive.  As for the things mentioned this time that weren't mentioned at all on previous scans, I have found that also in my own experience.  What generally happens is the reading radiologist may not always dictate all findings (which I think is wrong, but they do it sometimes nonetheless) on an earlier scan.  Then the patient has a scan a few months later that is read by a different doctor who may be the type to dictate about everything he/she sees on the film.  They will compare the new film with the old film and that's how the most current reading doctor knows about the things that were there the last time and are not new.  The radiologists look at the films, not the previously dictated reports.  It is their job to compare film to film.  This is how it has been explained to me.  Sometimes I get upset with the particular wording used to describe NED, leaving just a bit of doubt in my mind.  Each doctor has their own style and since we can't pick and choose who reads our scans, this is what we deal with.

Do not apologize for being down today.  I understand and so does everyone else.  I still think you are going to get through this.  I know how strong you are!  Hugs!

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

It means so much to me that only a short while after this post you two were there. Thank you. I can't talk to my husband about this stuff. He is just not interested enough except when he thought they were going to give me a colostomy and I have to say at that point he jumped in and became very resourceful. Things might have gone quite differently for me had he not found that advice from two trusted doctors to be unacceptable.

Martha, what you say makes perfectly good sense. Some of them say "no evidence of metastasis" but of course, this one does not say that and that bothers me too. It just says follow up required. I guess also I wasn't ready for any surprises, just curious to see a good scan when I went on to the portal. This was worse than the scan I had when I had Pertussis.

And yes you are so right about the freedom of information we as patients have now.

What happened to me with the vertigo and profound hearing loss was traumatic with lasting effects. I believe there is a connection. There are so many good papers written by doctors posted on these subjects. Problem is I have to look up every other word, but the computer helps with that too.

I have a few more appointments to go before I can earn my NED badge. Once again, patience is called for and courage.

I love this board. I need to get myself together so I can ask the doctor sensible questions.

You both helped me so much. I started to talk with my husband but I know he is just not there for me like I need. Only another survivor knows how we feel and why we behave sometimes the ways we do. I am very glad I don't have any tumors in my behind, at least!

Fondly,

Sandy

 

 

 

 

mp327's picture
mp327
Posts: 2973
Joined: Jan 2010

You are such a dear!  I have to totally agree with you in that this board (and others like it) are sometimes the only place where we can go to get real about all of this stuff.  My husband is great and all, but he just doesn't get some of this stuff that I deal with. 

As for the wording of radiologists' impressions of scans, I looked at a few of my scan reports and found the following:

6/3/13  "No evidence for metastatic disease in the chest, abdomen and pelvis."

8/13/12  "Stable CT of the chest, abdomen, and pelvis with no definite findings to suggest recurrent or metastatic disease."    I find the wording in this impression a little weaker than I'd like.  I wish it said "definitely no findings" instead of "no definite findings."

8/4/11  "No evidence of residual or recurrent disease in the chest, abdomen or pelvis from the patient's previously described squamous cell cancer of the anal verge is present."  This one sounds better to me!

My point is that each time a person gets a scan, even if it's the same type of scan, a different radiologist is likely to read it, especially in the larger facilities.  These doctors all have their own way of phrasing these impressions.

We are here for you, Sandy!  I would like to be able to take this all away for you, but since I can't, I will send up some prayers.

Yay for no tumors in your behind!  :)  I love that!  Hugs! 

eihtak
Posts: 857
Joined: Oct 2011

You are so right, after my last scan I went back and looked at the past several and saw such a varience in wording that I called and asked if there was a way to get the same radiologist to read my future scans. they said probably not. I understand that would be a scheduling nightmare but seems like the consistancy may be beneficial. Then, my daughter pointed out that different sets of eyes may see something that may be missed by having the same one all the time and that too could be beneficial. My scans go back and forth between stable and NED ....... as for spouses, try as they may, if they have not been there they are like others just incapable of truely understanding. A man at my church recently lost a foot in a farm accident. He is only 52, married, kids, active in the community.....he looks like he's doing great, seems cheerful, and moving on, but sometimes I just gaze at him in quiet prayer during mass and wonder???? I, other people, even his family, we can't know how he really feels.

As always all in my prayers as we move forward in health!

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

Thanks for this reminder that all we have to do is look around to know we are not alone in our struggles. I think with accidents it's hard not to want to do a replay of sorts to make things unhappen.  When I was struggling for balance and at church I watched one of our parishioners struggle to take the collection plate from the alter, knowing he had most of his toes, including a big toe removed as a result of Type 1 Diabetes. He almost always has a smile too. I think he has learned how to mask his pain.

The sermon this morning was on "you and you and me" or we, us, etc. The priest cautioned us on I, I, I. It is so true. That's why this board is so wonderful. Struggling with scans alone it's all me, me, me. But when I log on and talk to y'all I get a feeling of community and the strength that comes from that. It really is like the love of Christ speaking. (I don't mean to sound evangelical). It's just that I believe God works through people and this is one of the ways I am finding Spiritual help as well as comfort, guidance and friendship.

All of you are an answer to prayers in my heart.

Thank you.

Sandy

qv62
Posts: 296
Joined: Nov 2012

Sandy, just read this when I got in from work, I am sure you have been quite taken back and invititing yourself to the pity party is very understandable, I hope tomorrow brings you better news ! You are such a brave and strong person, keep your strength, keep your faith and know we are all here for you. You have been such a comfort to so many, try and feel all the good vibes coming your way, I am sending them as I type with lots of hugs !!!! Hope to check in tomorrow to see better news.

Marynb
Posts: 1134
Joined: Aug 2012

Sandy,

I am sorry to say that I have something similar worrying me right now. I also have nodules in my lungs that were not there before and one that has grown. The word terror describes how I feel. I have yet another scan with pulmonologist coming in 2 weeks. Let's think very positive thoughts. I refuse to research anything at this point. I cannot go there yet. I have been praying and I will also pray for you. I am numb, really. This is a roller coaster ride from hell. I simply cannot leave my daughter yet.

Sending you big hugs and promising to pray for you!

Mary

fourbeaner's picture
fourbeaner
Posts: 6
Joined: Aug 2013

This is only the second post I've made.  I'm a newb!  Don't plan on leaving your daughter!  I'm on a similar ride from hell!  And if you're not up to researching yet, don't!  You just do what you can do when you can do it.  Try not to fret too much while waiting for your scan.  Yeah, right, don't fret!  Let's say try not to let it consume your thoughts.  Medicine is so advanced these days!  Hang in there!

Marynb
Posts: 1134
Joined: Aug 2012

Thank you for your kind words! I am sorry to hear that you are on this roller coaster ride from hell too! Hang in there. Some fine day, they will find a cure for cancer! Until then, we can support each other and know that we are not alone. Sending you best wishes, hugs, and prayers!

qv62
Posts: 296
Joined: Nov 2012

I am storming Heaven for both you and Sandy, so sorry you are both going through the unknown, I know the feeling of comsuming your thoughts with this everyday are both frustrating and exhausting, I hope the next 2 weeks go quickly and end with good news, hugs and prayer your way !

 

Lisa

 

Marynb
Posts: 1134
Joined: Aug 2012

Thanks! I hope you are doing well too! I had a great visit with my beautiful daughter, the best medicine ever! It is a huge relief to know she is doing well and is happy. I hope you are having a good summer and that you have some answers, for now.

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

You have been on my mind a great deal, Mary. Thank God we have each other.

Fondly,

Sandy

Marynb
Posts: 1134
Joined: Aug 2012

I am flattered to be called your sister. I hope to have half the strength and dignity you have shown! Together, we will beat this thing. Hang in there! When do you see the doctors again?

lp1964's picture
lp1964
Posts: 856
Joined: Jun 2013

...lol. Interestingly I found this forum through a story of an anal cancer patient. Since that was my very first impression of this forum and our initial treatment is the same I feel very comfortable with you guys, my sisters.

Laz

mp327's picture
mp327
Posts: 2973
Joined: Jan 2010

Yes, you are a brother to us!  I particularly like having male participation on this site because sometimes men have a perspective on things that women just don't think about.  I think that works in visa versa too. 

Marynb
Posts: 1134
Joined: Aug 2012

I love it.....Sisters and brothers! We will all get through this together!

sephie's picture
sephie
Posts: 536
Joined: Apr 2009

i love your smile ,,,it makes me smile     .... we are all here together and prayers for us all.....  sephie

jcruz
Posts: 242
Joined: Jan 2013

I can't add anything to what the others here have offered in support and understanding.  Just wanted to say that I'll be thinking of you as you go through this new round of doctors and questions.  

Janet

pializ
Posts: 275
Joined: Nov 2012

Wishing you good news today. I will be thinking of you.

Sending you lots of cwtches xxxx

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

I am good, thanks. My doctor visit went well. He didn't believe from the report there was anything to worry about. He got quite a few chuckles from my questions and circles and pointing to all the reports standing over him pointing to all these paragraphs on this page and that, like I was in charge. I have never been so assertive with him before and have been his patient for many yearsr.

He needs to look at the disc, though before he gives an absolute assurance there is no chance of a metastasis but I am grateful he feels so optimistic there isn't a problem with it being cancer. He caught a good friend of mine's cancer in a very early stage, so I have confidence if it looks like cancer, he will know it.

Thanks for all your support.

I am so glad to have already had this appointment scheduled. He was following up on the inflammation I had just before they did the scans that happened coincidentally right after the vertigo/hearing loss. It was a terrific coincidence the scans were done and he could see what the inflammation had done. The information is helpful in helping him treat this chronic condition.

All the best to everyone. Hang in there!

Sincerely,

Sandy

 

 

Marynb
Posts: 1134
Joined: Aug 2012

You must be so relieved! Hoping you get better and better every day!

pializ
Posts: 275
Joined: Nov 2012

So glad all is good! All this stuff & the individual way it is reported....... I don't automatically get a copy of my reports & in fact, only incidentally saw my report on the last mri scan whilst I was waiting for my tvs. It was on the computer screen and I was awaiting radiographer to come bacj in. I'm not sure what is best, because without someone being present to interrogate ( I kid you not lol), then we are left with our imaginiation & catastrophic interpretations. As a mental health therapist practitioner I am well aware of thinking errors, but hey! This is my life e are talking about, & cancer is a big one to contend with. I sometimes (most time possibly) I forget the enormity of such a diagnosis & just plod along day by day. But then the tests, reports & appointments and I go full circle. I'm sure you all get what I mean!

Liz

mp327's picture
mp327
Posts: 2973
Joined: Jan 2010

Fantastic news!  I am so happy for you, my friend!

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

He said there isn't any way to predict if I will have an apparently autoimmune related attack on my other ear. Everything points to an autoiimmune issue, as yet undiagnosed. I decided to take Lip Reading Classes online, just in case I wind up suddenly in a silent world. It's interesting anyway. It is the only control I have. It's harder to take lip reading if you are already totally deaf.

By the way, I went to Zumba today and had a ball! I feel like the material I found on the internet about 6-8 weeks to recover from the vertigo was exactly right. Cleveland Clinic is in the forefront of research on the subject of SSNHL. Isn't it interesting that they are also strong in the Anal cancer area? Wonder what their reputation is in diverticulosis??? (lol)

The second anniversary of my last treatment is the 15th and things are starting to look good again.

Sandy

mp327's picture
mp327
Posts: 2973
Joined: Jan 2010

I love your last sentence!   I'm glad you are enjoying the Zumba!  I would like to learn how to read lips, primarily because I don't hear well in environments with a lot of background noise, such as a loud restaurant. 

pializ
Posts: 275
Joined: Nov 2012

Our daughters name

Anal cancer

SSNHL

Lung problems (I have asthma)

Hmmmm! Wonder what it could mean.........

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

I think it means God is everywhere and we are here for each other because of that.

Or maybe I have a twin????? lol.

Fondly,

Sandy

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