Somethings up???

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.

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

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 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.

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 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

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 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.

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 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.

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