Not sure what to think of the info I got today

[LeahM]

If you saw my Tamox Gripe thread then you know I have been experiencing some strange things lately, mostly tingling on my left side and shortness of breath. I have had my Pulse Ox taken 3 times since Sunday and each time it has been 99%. My resting heart rate has been hovering around 100bpm. So I have had some tests:

EKG is normal. (ordered by PCP)

Venous Doppler ultrasound of lower extemities normal. (ordered by med onc)

CT Scan with Contrast of chest (ordered by PCP) shows scarring right upper lung lobe r/t rads (not surprised) and a 5mm nodule and a 4mm nodule on both my left and right lung...origin unknown...rescan in 3 months. (again, this was PCP not onc) No PE, which is what he wanted to rule out.

Next Wed I have a 2D Echo scheduled (insurance denied a 4th MUGA...whatever)

So here is where I am at:

1) Why didn't onc order these scans when I told his nurse I was SOB?? And...I bumped into said nurse while at hospital after CT Scan...I love her...she is sooooo on my side...yet PCP calls me with results...not onc?? Should I be mad at him? (I often feel like I "bug" him but I want him to know I am me and not a statistic...plus having a medical background doesn't help as I am always asking questions)

2) The reason why my BC was found so early is that I am a lumpy, bumpy person and am always having "things" checked...fibroadenomas, sebacious cysts...I also am one of the 5% of the population that has an extra elbow muscle....(and boy does that cause problems). My point here is that I have a history of benign everything...until BC.

3) I can't stop thinking of BonnieR who had a lobe removed for nothing...Bonnie...I would love to hear that whole story

4) I would rather have Herceptin related heart issues (good reason why my Pulse Ox is ok and my resting heart rate is high) then lung mets. Seriously. Nurse says I would just stop Vit H if 2D Echo is bad...next Vit H March 12.

5) I am slightly freaking out...and would prefer not to "know" this stuff now as PCP says "do nothing and rescan in 3 months"....I have HUGE plans for this summer as last summer was a bust...and re-treating CA is not on my "to do" list.

6) Tomorrow AM I have a follow up appt. with rad onc., she isn't going to know what hit her when Alan and I come in the room.

7) I realize that there is nothing that can be done with a "nodule" that small...I wish I hadn't had the test and had gone with my first thought which was to wait till after the 2D Echo and if the results of that were ok then I would address the lungs.

8) I dont know what to do/think at this point.

9) Need hugs and prayers....

Thanks
Leah

[CoolBreeze]

It sounds to me like they are doing everything for you to try and find what your problems are. I do think anxiety can cause a lot of these issues. I've been in herceptin for 3 years - my MUGA (every three month) numbers dropped from 65 to 55 but still within normal range.

I have shortness of breath too but have been on chemo three years. They have done some tests, including lots of breathing ones, but I found nothing out of the ordinary. I am not sure why you want a scan but I think you are going to have to realize that some side effects are going to happen to you and they last a while after treatment. SOB is not a sign of early lung mets, which may be your fear.

You are NED. Take those question marks out of that statement in your signature. You are NED. Enjoy that. A lot of us don't get it. The four months I thought I was NED were some very happy months. Please give yourself that time. Your body is getting back to health after a traumatic experience and you as your blood regenerates, you may have bone pain and SOB. I would tell folks to investigate and tell their doctors but you have done that and are getting a complete evaluation. So do your best to relax into that.

Try to believe you'll be okay and when you start to "freak out" go to a happy place for you. Whether it's yoga, painting, scrapbooking, blogging, helpiing a child - do something that takes your head out of yourself.

*hugs*

[StephN]

Yes, those here who do have some sort of medical background can tend to be ultra-vigilant. Sometimes, it has been said, a little knowledge is more dangerous than none.

I like the attitude expressed by Cool Breeze. There are some long term effects from chemo and the other treatments that vary from one to another, but DO occur. Our doctors do not say much about these, and we are never given a laundry list of side effects to expect. We just try to deal with things by the seat of our pants.

This is a big part of the value of this web site - we can talk to those who are in the same shoes.

[Paty]

Leah,

You have my hugs and prayers dear. I do not have much of an advice to give you, what I can say is that I had some symptoms like the ones you have an it turned to be anxiety attacks. Now, my x-rays of chest were 'normal' except for the fibrosis in the upper lobe of the right lung. Do not panic. The nodules that seem to be there could be something else, not even the doctor can determine at this point what they are. Try not to think about it, there is always treatment.

[CoolBreeze]

I forgot to say, that even though I have mets (to my liver) I have nodules in my lungs. Most people do. Rescans and PETs show that they are just likely scarring from an old bronchitis or pneumonia and have not grown in two years.

The problem with us cancer patients is we get to see the inside as well as the outside, and we have as many warts and lumps and scars inside too.

[sarah]

Leah, Cool and Stephanie are correct, side effects happen and the docs don't tell us about them but given a choice, would we not do chemo or radiation knowing our lungs or arteries might have problems? No, the most important thing is to stay alive and be as active and happy as we can be.
Being vigilant is good but being overly anxious is not.
I ask too many questions also!!!
I also have breathing problems thanks to side effects but I walk, I go to the gym, I travel, etc. I huff and I puff when I go up hills or do too much but do I regret or second guess my treatment? No, I'm so very grateful I'm still here!!! as a friend who like me has had a recurrence "Life is just too much fun!" that's my new motto.
Take care and enjoy things. You'll have a great summer.
hugs
sarah

[Lauriesh]

The sob and tingling could be anxiety/ stress. My dr had me take an Ativan the next time I had some sob and tingling to see if it got better. He said if it did, then you know it is related to stress/ anxiety. Mine did. It might be worth a try.

Laurie

[PinkGirl]

Hi Leah
I had the lung nodule thing happen twice. Both times I had CT
scans every 3 months to look for changes. They never changed.
Someone decided that they were probably from coughing a lot
when I had bronchitis. Sorry you're having to deal with this.

[NEDenise]

Leah,
I have benign lung "things" too. Lots of bronchitis and pneumonia in my past, so no big surprise.

I agree with the SOB and tingling being the possible manifestations of anxiety...you're certainly entitled to as much of that as you want/need! If you have that Ativan...maybe it's worth a try. At least in the short term...to get symptom relief. Works wonders for me sometimes.

Your treatment updates, and the team you've described so far seem to have been top-notch. I hope that continues and that you get some answers and relief sooner rather than later.

Deep breaths, try to stay calm...easier said than done...
Prayer and hugs headed your way!
Denise

[MJo]

I have a lung nodule. My oncologist said "I've seen a million of these." Of course I was scared, but so far so good.

My 9th month of Herceptin, after my Muga scan, I walked into the doc's office ready for my infusion and he told me "No more Herceptin for you" My Muga showed a drop in my ejection rate, or whatever it is. Very upsetting, but I'm sure I got enough Herceptin to wipe out that da---d cancer. So far so good, and my heart is fine.

Anxiety causes numbness and tingling in hands and even face and shortness of breath -- I know! I use Xanax, but only when I need it.

Stay well, my dear sister. Treatment is no walk in the park!

[Becky]

I also have a lung nodule and an area of scarring from an pneumonia from years before BC. We are an unfortunate group that we know all the weird things in our bodies from tests and scans. The regular population has these things too but just don't know it because they haven't been poked, prodded and pinched like we have been.

I know you will still worry. I did too but believe it is nothing because it probably is.

Huge hugs from me to you.

[BonnieR]

Bonnie here! The one with the cautionary tale! You are so right to remember my story and consider what happened. I had a chronic cough and scans were ordered which lit up. I got referred to the oncology lung surgeon because it was in an area that could only be reached by a surgical biopsy. He could not just do a needle biopsy. When he operated, the frozen section came back positive for lung cancer so her removed the lobe on the spot. Two days later I was told the lab made a mistake and it was benign!!! It was just old scar tissue from previous lung infections. Which we all probably have
My mistake was allowing myself to be rushed. I had a pending appointment with a pulmonary specialist. I mentioned that to the surgeon who said" he will only send you back to me anyway". Later the pulmonary guy said that was not true. He first would have done conservative things like a course of antibiotics to see if there was improvement
So you can see how this happened Once you've had cancer, they look for more. But a lot of things can cause us to light up on scans And then the situation snowballed
It was a big rush and I felt uneasy about it. I felt bullied But at the same time, it seemed logical enough. Cancerland has slippery slopes
Keep the faith

[karen z]

You have received some fabulous advice here. Try to relax (hard I know).

[LeahM]

Thank you all!! I saw my rad onc today for a scheduled follow up appt (my skin has done amazingly well, btw) and she and I went over the CT Scan...loosely quoted this is what she said to me:

"Leah, we all have lumps and bumps in our bodies and 99% of the time they are benign, many times you never even know you have them. If you weren't a cancer patient and had this scan done I would say to you; these nodules are very small but big enought to see and what I see doesn't worry me. This could very well be something you were born with or something caused by multiple bronchitis infections, and I would suggest a rescan in 6 months and consider this your baseline. Since you have a history of BC I will say this to you; all of the above except we will rescan in 3 months and consider this your baseline. If you were my own sister I would tell you not to worry."

She went on to say that what I am experiencing is classic anxiety symptoms...I get that but I don't think that that is my problem (but I did take an Ativan today). She also said that they are classic Herceptin side effects and I do have a 2D Echo scheduled for March 6. So I will know more then.

She was glad my PCP ordered the test but she has taken over. Next scan on June 13 and I will see her again on June 14.

Then she hugged me.

I do love that Dr. MacIntosh...

...and all of you...thank you for lifting me up!!

Leah

[jaykay]

Good news. I especially like the "if you were my sister"

Enjoy your weekend!

[BonnieR]

Any doctor who hugs you is a keeper!

[NanaJoni]

Leah - so glad your dr was reassuring today (and is kind enough to know you needed a hug). I have some scarring from radiation treatments on top of a lifetime of ashthma and bronchitis which also scars. So SOB is a chronic problem with me. I notice that, aside from Herceptin, you are finished with all the "big" treatments and may be experiencing (and I have heard of many others) the "end of treatment" anxiety. It's as if a safety net has been pulled out from under you. No more big guns to fight the cancer. And, believe me, that can lead to anxiety - I also had some minor tingling in hands and feet especially feet at night when doing long-term Herceptin. I started taking 100 mg of B6 every day and it really minimized the tingling. As always, ask before taking but 100 mg is a standard dose and shouldn't cause any problems if you go that way. Give yourself some time to relax and enjoy being done with chemo and radiation. Let your body and spirit heal as spring comes.

[caya]

Wow Leah, your doc is amazing - also love that "if you were my sister" line- I wish all docs would remember that...
BTW, I developed SOB about a year ago, only noticed it when I was climbing up stairs, or going for long walks. With BC of course I immediately thought the worst, my GP did send me for a chest Xray, which was clear, but she also sent me for a special breath test, where you blow really hard and long into this tube and they measure ... well guess what, turns out I now have asthma - I strongly feel this is a late s/e from Herceptin. So I have an Advair disk and emergency puffer - I only use the disk occasionally, and the puffer maybe 3 x in the past year. More parting gifts from BC treatment, but hey, it is what it is.

Keep well.

all the best
caya

[europa]

Oh Leah, I am so sorry you are going through this. But I love what your doctor said and if I were you I would think along those lines. You will be fine. I had to sit down today after walking up two flights of stairs at the gym. It was so embarrassing because I could barely speak I was so out of breath. I use to be able to do an hour spinning class followed by an hour of yoga. Now I can't even walk up two flights of stairs. Unbelievable.

[IrvineFriend]

Hi Leah,

Glad to hear you sounding so good. What a nice Dr!