Somethings up???

eihtak

Hi all...

So I've always been a really optimistic person and really good at "passing the buck" of worry to God when its just out of my hands. But.....for the next few days my usually patient mind is busy with wonder.

I had a follow-up CT scan today (3 years post anal cancer mets to lung treated with lobectomy and chemo)

A bit over a year ago I started having shortness of breath and wheezing especially upon exertion. My doc ordered all the necessary tests including scan, xrays, echo, and stress to no avail. Over the year it seemed to largely correct itself and only presents occasionally now????

Well, I got a call to come in this afternoon to go over the scan which I wasn't scheduled to do until Friday. There is something (though at this point don't know what) in the area of the hilum (the small part thats like an entrance to the lung that is a complicated mess of veins and arteries) so hard to distinguish exact location I imagine.

I am now sceduled for a PET scan on Wednesday and meet with the doctor on Thursday. I suppose it could be another met, new cancer, scar tissue, or clot...all in need of some kind of treatment and all with some degree of risk. To be honest, I think a clot scares me the most right now! And...I'm angry that while scans have been a hugely necessary part of my follow-up they are a "catch 22" in that they can along with radiation when so over the max recommended safe amount also be the cause of my issues!

Anyhow...thats that! Wish luck in once again acknowleding that this truly is out of my hands. I'll keep you all posted after I learn more.

katheryn

ACinNC

Hi Kathryn,

Hi Kathryn,

Does your doctor at all suspect a clot?  There is a simple blood test that can help determine that.  It's  called D dimer.  A funny name for sure.

My husband has had symptoms like yours with the shortness of breath upon bursts of exertion. He was fully worked up as you were and was told he had a very mild case of pulmonary hypertension and it didn't  need treatment. He is 71 and the doctor said many people develop very mild  PH as they age. He also has chronic anemia due to a blood disorder and this also causes some shortness of breath.  I mention his situation because of the similarities because his also comes and goes.

Having had lung met and the latest scan report it must be nerve wracking to think of the possibilities.  I hope the PET scan comes back negative. At least you don't  have long to wait for the scan.  I have to relate what my doctor said about my PET scan last month.  Oddly, the scan showed an avid node in the hilum and that really had me concerned until I talked with my rad onc. He said that the PET scanner he uses has this show up more often than not and that it is not cancer. I do have a lung nodule that seems to be growing and will have a CT scan in Oct to see if it continues to grow.

I'll  be thinking of you.

eihtak

ACinNC said:

Hi Kathryn,

Hi Kathryn,

Does your doctor at all suspect a clot?  There is a simple blood test that can help determine that.  It's  called D dimer.  A funny name for sure.

My husband has had symptoms like yours with the shortness of breath upon bursts of exertion. He was fully worked up as you were and was told he had a very mild case of pulmonary hypertension and it didn't  need treatment. He is 71 and the doctor said many people develop very mild  PH as they age. He also has chronic anemia due to a blood disorder and this also causes some shortness of breath.  I mention his situation because of the similarities because his also comes and goes.

Having had lung met and the latest scan report it must be nerve wracking to think of the possibilities.  I hope the PET scan comes back negative. At least you don't  have long to wait for the scan.  I have to relate what my doctor said about my PET scan last month.  Oddly, the scan showed an avid node in the hilum and that really had me concerned until I talked with my rad onc. He said that the PET scanner he uses has this show up more often than not and that it is not cancer. I do have a lung nodule that seems to be growing and will have a CT scan in Oct to see if it continues to grow.

I'll  be thinking of you.

ACinNc...

Wow,

Thank you for the almost immediate and very reassuring response!

This is exactly why I love this forum so much!

My doctor did in fact mention the possibility of all I posted including the clot, and while that scares me a lot, I am on a blood thinner for a previous clot that occured after the lobectomy so he did not seem too convinced on that one. My blood work was all great and that has usually been a good first indicator of cancer leaving scar tissue as a likely candidate. The thing that he said was that hes seen that (scar tissue) occur in cases like mine but concerned about the fact that it seems to be growing 3 years post treatment. 

Maybe I'm too healthy now and even that is growing strong, lol!!   I do have to remind myself how lucky I am because my doctor is super thorough and once sent me in a panic for an immediate kidney ultrasound after finding a suspicious spot on my kidney during a pelvic scan. All was good and it turnrd out to be a small cyst.

I'll keep you in my thoughts that that nodule of concern on your lung stops where its at!

Thanks again for the helpful response...I feel better already!

katheryn

mp327

Katheryn

I'm so sorry you have this worry to deal with, Katheryn.  I understand your concern and I hope the CT scan will provide some answers for you and your doctor and that it is nothing of concern.  I will certainly be keeping you in my thoughts and hope you'll let us know what you find out. 

eihtak

Thank you...

Thank you all for your support and concern.

I had my PET scan yesterday and met with my doctor today. The area of concern did not miraculously disappear. Fortunately it is small and caught early. My doctor feels it is not needed to biopsy it as that can sometimes depending on location, add further issues. He says it needs to be treated whether cancerous or benign but is quite sure it is of the same origin as my last mets which was anal cancer. The difficulty is in the location as it is in the part of the hilum that is where the intricate veiny structures attach to the lung. 

The plan is still fairly simple and will be radiation for 5 to 10 days. At first he had thought even less but the rad onc decided that less damage to surrounding area (like arteries, veins, valves, heart tissue, etc) would be easier to acheive with more doses at lesser strength. After a couple months I'll be scanned once again and evaluate the need for chemo. Surgery to this intricate area is a bit risky, (especially since I've already had that 3 years ago) so very relieved to have this plan. The rad onc said the difficulty is in setting up the radiation as they are aiming at a small target that moves with each breath, so it will be important to try not to yawn, cough, etc. during radiation. They will make a video of my breathing (internally) to aim the beam more precisely and coordinate with my breathing.

I have so much confidence in my doctor as he has experience, is heavily involved with research, on a couple advisery boards, and a respected professor/consultant at UW-Madison as well as a long list of oncology related credentials. Some people complain of his "over the top" attention to every little detail, but I for one feel lucky to have landed in his office almost 8 years ago!

So, while this not a ride I am excited to take, I feel pretty positive that I can hang on through out once again.

katheryn

Ouch_Ouch_Ouch

eihtak said:

Thank you...

Thank you all for your support and concern.

I had my PET scan yesterday and met with my doctor today. The area of concern did not miraculously disappear. Fortunately it is small and caught early. My doctor feels it is not needed to biopsy it as that can sometimes depending on location, add further issues. He says it needs to be treated whether cancerous or benign but is quite sure it is of the same origin as my last mets which was anal cancer. The difficulty is in the location as it is in the part of the hilum that is where the intricate veiny structures attach to the lung. 

The plan is still fairly simple and will be radiation for 5 to 10 days. At first he had thought even less but the rad onc decided that less damage to surrounding area (like arteries, veins, valves, heart tissue, etc) would be easier to acheive with more doses at lesser strength. After a couple months I'll be scanned once again and evaluate the need for chemo. Surgery to this intricate area is a bit risky, (especially since I've already had that 3 years ago) so very relieved to have this plan. The rad onc said the difficulty is in setting up the radiation as they are aiming at a small target that moves with each breath, so it will be important to try not to yawn, cough, etc. during radiation. They will make a video of my breathing (internally) to aim the beam more precisely and coordinate with my breathing.

I have so much confidence in my doctor as he has experience, is heavily involved with research, on a couple advisery boards, and a respected professor/consultant at UW-Madison as well as a long list of oncology related credentials. Some people complain of his "over the top" attention to every little detail, but I for one feel lucky to have landed in his office almost 8 years ago!

So, while this not a ride I am excited to take, I feel pretty positive that I can hang on through out once again.

katheryn

Again, again.

eihtak,

You have been so supportive of the others on this forum that I hope you will take support from us whenever you need it. (This from someone who drops by only intermittently. >_< ) 

I hope that the targeting is as finely tuned as the team needs it to be. Can you breathe shallowly for the time the exposure takes or would that stimulate coughing? If only you had gills.

eihtak

Ouch_Ouch_Ouch said:

Again, again.

eihtak,

You have been so supportive of the others on this forum that I hope you will take support from us whenever you need it. (This from someone who drops by only intermittently. >_< ) 

I hope that the targeting is as finely tuned as the team needs it to be. Can you breathe shallowly for the time the exposure takes or would that stimulate coughing? If only you had gills.

Ouch...

Thank you,

Yes, I have learned the value in graciously accepting support from others and I feel so lucky to have that here!

They will have some kind of heavy belt on my abdomen that is supposed to help keep breathing slow and steady. The problem is that because of this growth it is sometimes hard to lie flat and not to cough but I will learn more on Monday. I am spending the next couple weeks brushing up on some meditation and breathing exercises I used to do but have kind of let slide. I feel like I'll be able to do it for the (hopefully) short exposure time needed.

Gills would work, lol!

Thanks again...

katheryn

tanda

eihtak said:

Thank you...

Thank you all for your support and concern.

I had my PET scan yesterday and met with my doctor today. The area of concern did not miraculously disappear. Fortunately it is small and caught early. My doctor feels it is not needed to biopsy it as that can sometimes depending on location, add further issues. He says it needs to be treated whether cancerous or benign but is quite sure it is of the same origin as my last mets which was anal cancer. The difficulty is in the location as it is in the part of the hilum that is where the intricate veiny structures attach to the lung. 

The plan is still fairly simple and will be radiation for 5 to 10 days. At first he had thought even less but the rad onc decided that less damage to surrounding area (like arteries, veins, valves, heart tissue, etc) would be easier to acheive with more doses at lesser strength. After a couple months I'll be scanned once again and evaluate the need for chemo. Surgery to this intricate area is a bit risky, (especially since I've already had that 3 years ago) so very relieved to have this plan. The rad onc said the difficulty is in setting up the radiation as they are aiming at a small target that moves with each breath, so it will be important to try not to yawn, cough, etc. during radiation. They will make a video of my breathing (internally) to aim the beam more precisely and coordinate with my breathing.

I have so much confidence in my doctor as he has experience, is heavily involved with research, on a couple advisery boards, and a respected professor/consultant at UW-Madison as well as a long list of oncology related credentials. Some people complain of his "over the top" attention to every little detail, but I for one feel lucky to have landed in his office almost 8 years ago!

So, while this not a ride I am excited to take, I feel pretty positive that I can hang on through out once again.

katheryn

eihtak

sorry to hear your latest news...however you are most fortunate to have an ongoing relationship with this excellent, compassionate physician.

Would pencil beam scanning proton radiation be an option?  it is very precise and, theoretically, does less damage to surrounding areas..

You are a trouper and seem to handle everything with confidence and calm

eihtak

tanda said:

eihtak

sorry to hear your latest news...however you are most fortunate to have an ongoing relationship with this excellent, compassionate physician.

Would pencil beam scanning proton radiation be an option?  it is very precise and, theoretically, does less damage to surrounding areas..

You are a trouper and seem to handle everything with confidence and calm

tanda...

I was given a lot of info in the different forms of radiation that I don't recall receiving with my initial dx. The clinic in my area has a new center so maybe some advances in technique. Stereotactic radiation is what I believe to be the plan (Ill ask questions on Monday). It is most often used on lung and spine and the info says it allows the beam to account for organ motion during treatment. I often find this info so interesting and wish I was 18 again wondering what to be when I grow up...I may consider something in the medical field. My major when starting college so many years ago was ...dance, haha!

mp327

eihtak said:

Thank you...

Thank you all for your support and concern.

I had my PET scan yesterday and met with my doctor today. The area of concern did not miraculously disappear. Fortunately it is small and caught early. My doctor feels it is not needed to biopsy it as that can sometimes depending on location, add further issues. He says it needs to be treated whether cancerous or benign but is quite sure it is of the same origin as my last mets which was anal cancer. The difficulty is in the location as it is in the part of the hilum that is where the intricate veiny structures attach to the lung. 

The plan is still fairly simple and will be radiation for 5 to 10 days. At first he had thought even less but the rad onc decided that less damage to surrounding area (like arteries, veins, valves, heart tissue, etc) would be easier to acheive with more doses at lesser strength. After a couple months I'll be scanned once again and evaluate the need for chemo. Surgery to this intricate area is a bit risky, (especially since I've already had that 3 years ago) so very relieved to have this plan. The rad onc said the difficulty is in setting up the radiation as they are aiming at a small target that moves with each breath, so it will be important to try not to yawn, cough, etc. during radiation. They will make a video of my breathing (internally) to aim the beam more precisely and coordinate with my breathing.

I have so much confidence in my doctor as he has experience, is heavily involved with research, on a couple advisery boards, and a respected professor/consultant at UW-Madison as well as a long list of oncology related credentials. Some people complain of his "over the top" attention to every little detail, but I for one feel lucky to have landed in his office almost 8 years ago!

So, while this not a ride I am excited to take, I feel pretty positive that I can hang on through out once again.

katheryn

katheryn

Your attitude is wonderful and it sounds like you have complete confidence in your doctor, who I must say, has some quite impressive credentials, per your post.  I'm glad that you are in such good hands.  Wow, I can't imagine the difficulty in delivering radiation to such a small area, especially where there is movement.  It's too bad you are not one of those pearl divers who can hold their breath for several minutes!    I'm sure you will do just fine.  As long as I've known you through this forum, I know that if anyone can get through this, it's you.  The first 3 letters of your name are "k-a-t."  That's close enough to "cat," and we know those have 9 lives!  May God bless you as you take on this next challenge.  Please keep us posted as much as you are able.  You are in my thoughts and prayers.

eihtak

mp327 said:

katheryn

Your attitude is wonderful and it sounds like you have complete confidence in your doctor, who I must say, has some quite impressive credentials, per your post.  I'm glad that you are in such good hands.  Wow, I can't imagine the difficulty in delivering radiation to such a small area, especially where there is movement.  It's too bad you are not one of those pearl divers who can hold their breath for several minutes!    I'm sure you will do just fine.  As long as I've known you through this forum, I know that if anyone can get through this, it's you.  The first 3 letters of your name are "k-a-t."  That's close enough to "cat," and we know those have 9 lives!  May God bless you as you take on this next challenge.  Please keep us posted as much as you are able.  You are in my thoughts and prayers.

Martha...

Thank you for the encouraging words and prayers. While this is a frustrating spot to be in, it is the reality of my situation and I have no choice (In my mind) but to tackle it head on with an optimistic attitude, (and prayer).

I often picture these challenges on a scale of plus and minus and if the scale is long enough enabling one to see all the much bigger, worse situations in the world that we could be facing, I still fall well into the plus side.

K-a-t....this makes me smile so much! My dad used to call me Kat, actually and I really don't know why, but when I was young he called me "kat babe kid"... Thank you

katheryn

Ottawamarc1234

Me Too Shortness Of Breath and Body Parts Falling Asleep...

Assumed it was my smoking or the Extreme Summer Heat. Hurts now walking up small hills..grabbing at me chest nipple area. Am a guy. Docs think nothing. Also body parts falling asleep frequently. Post 23 Days Chemoradiation. .oh and the stupud new 'Anal Fissure' thats keeping me awake at night...not healing too good. No idea what the hells gping on with me 57 Aug 14th.

eihtak

Ottawamarc1234 said:

Me Too Shortness Of Breath and Body Parts Falling Asleep...

Assumed it was my smoking or the Extreme Summer Heat. Hurts now walking up small hills..grabbing at me chest nipple area. Am a guy. Docs think nothing. Also body parts falling asleep frequently. Post 23 Days Chemoradiation. .oh and the stupud new 'Anal Fissure' thats keeping me awake at night...not healing too good. No idea what the hells gping on with me 57 Aug 14th.

Ottawamarc1234....

Hi,

You've had a tough time of this I am so sorry. I was initially treated over 7 years ago but at the time I was very very low on iron and thus dealt with some shortness of breath as well. Once I started taking an iron supplement, I take Ferrus sulfate, within days it was much improved. I wonder if that may help in your situation????

katheryn

annie4145

katheryn -good luck

Good luck with the radiation treatment.  I hope that takes care of it and that chemo is not needed.

Wisteria83

Katherine

I'm so sorry to hear that this is going on...you've been through enough already!  You'll be in my thoughts....sending all positive energy your way to get through this.  Hugs.~Wis

 

eihtak

Thank you...

Thank you all for the positive well wishes. 

I met with my radiation oncologist today to set up the simulation for rads but she decided to redo because she wanted a scan with contrast (initially thought she could do with out) and I am allergic to the contrast so need to have a couple days to pre medicate. In the mean time though, we had time to discuss other things related and while she is very confident that this growth is an anal met (same as last one 3 years ago) when I talked about my childrens and some of my concerns she has also ordered a biopsy to confirm. They can not get me in for that till the 8th of August but she reassured me that though this can't be put off for months, a week will be fine. Also, after discussing second opinions she very willingly agreed to contact Dr. Eng at MD Anderson and said while she has not worked with her she is well aware of her. This made me so happy!

My radiation onc is military trained and has a great deal of military medical experience working on some level of radiation in Iraq. When I told her this whole situation is extremely stressfull for my daughter who is military and away at training/school for most of the fall...she said if need be she has ways to "work the system" and get her home. Again, making me happy, although I don't think we'll need to do that.

So...a bit of delay in more detailed dx for me, but so happy to be dotting i's and crossing t's.

katheryn

ACinNC

eihtak said:

Thank you...

Thank you all for the positive well wishes. 

I met with my radiation oncologist today to set up the simulation for rads but she decided to redo because she wanted a scan with contrast (initially thought she could do with out) and I am allergic to the contrast so need to have a couple days to pre medicate. In the mean time though, we had time to discuss other things related and while she is very confident that this growth is an anal met (same as last one 3 years ago) when I talked about my childrens and some of my concerns she has also ordered a biopsy to confirm. They can not get me in for that till the 8th of August but she reassured me that though this can't be put off for months, a week will be fine. Also, after discussing second opinions she very willingly agreed to contact Dr. Eng at MD Anderson and said while she has not worked with her she is well aware of her. This made me so happy!

My radiation onc is military trained and has a great deal of military medical experience working on some level of radiation in Iraq. When I told her this whole situation is extremely stressfull for my daughter who is military and away at training/school for most of the fall...she said if need be she has ways to "work the system" and get her home. Again, making me happy, although I don't think we'll need to do that.

So...a bit of delay in more detailed dx for me, but so happy to be dotting i's and crossing t's.

katheryn

Biopsy

It sounds like your rad onc is being extra cautious and considering where the suspicious mass is and the delicacy in treating it, that seems very wise. And personally I would want the biopsy for those reasons so that in the hopeful event that it is not cancerous you don't endure unnecessary treatment. And if it is cancerous there is still the possibility it is not AC in origin.

I will continue to keep you in my thoughts as you proceed with this workup.

mp327

katheryn

Thanks for the additional update.  I'm so glad your doctor is being extra cautious and wants to know exactly what is to be dealt with.  I'm very happy to hear that Dr. Eng is going to be consulted.  She is one of the best doctors in the country when it comes to metastatic anal cancer.  Please keep us posted on how things unfold.  In the meantime, you are in my thoughts and prayers.

pializ

Katheryn

Best wishes re the biopsy! Will be thinking of you across the pond

Liz

eihtak

Liz...

Thank you,

I'm not really nervous of the findings (as the likelihood of anal mets is high for me) and I've just had to accept that, but I really dislike being put out with anesthesia, I always imagine I'm the person who is overly chatty when coming out of it and think theres a good chance I say things I wish I hadn't. 

Oh well...I'm sure they've heard it all before!

I'll keep you all posted as I learn more.

Thanks again for the well wishes,

katheryn