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LisaA

Newly diagnosed, awaiting PET scan

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Hello,  I am so glad to have located this group. I feel like I have no support group and nowhere to get answers. 

I am 59 years old. I recently had to go to the emergency room with an unrelated problem where they took a routine chest xray where they saw abnormal findings. They proceeded to do the CT scan and confirmed two masses. One is upper right lobe and measures 5 cm. The other is lower right lobe measuring 8 mm.  I am devastated.

I had an appointment on Friday with University of Pennsylvania cancer/lung team. They are suspecting that it will is Stage 1B, but have ordered a PET scan for this Wed to confirm that.  I also have an appointment with one of the lung surgeons that day.
I have had chronic long term asthma so I didn't notice a difference in my breathing. I always have symptoms and it seemed the same to me. My O2 levels are generally 97%. I lived with heavy smokers all my life, plus I smoked as well over 20yrs. I quit at age 39.  I live a very healthy lifestyle and work in healthcare myself. I'm floored by this.  I have no idea what my future holds.  Does anyone have insight into how worse my breathing will be after a lobectomy? I so want to not have to give up my career as I am a single woman responsible for my mortgage, etc. 

Does anyone here have advice about Univ of Pennsylvania for a treatment center? It is rated one of the top 10 in the country, but I would like input if anyone has any. 

Blessings to all of you. I wish none of us had to endure this!

Lisa

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Lisa, 

Sorry to learn of your diagnosis. Sadly, surprise is a common condition. Lung cancer rarely displays symptoms. So bottom line up front: almost 15 years ago I had a right pneumonectomy. I’ve lived a full life with about about 38% of total lung capacity. The reason it is not 50% is I had a metastasis to my left lung after surgery and further treatment reduced capacity. I wouldn’t worry about life after surgery. You won’t run marathons but it hasn’t stopped me from doing things I enjoy. 

As a forum moderator, I can’t comment on practitioners or treatment facilities but you’ve likely done research on UPenn’s (Jefferson Hospital I think) cancer treatment reputation. 

You’ve got some new vocabulary to assimilate, quickly. Surf to LUNGevity.org Lung Cancer 101 and start the assimilation. We’ll field your questions. 

You may notice a blog section on our forum. Mine is titled Stay The Course. Read my Ten Steps To Surviving Lung Cancer entry. One more thing: if I can live, so can you. 

Stay the course. 

Tom

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Hi Lisa,

Sorry to hear about your diagnosis. I was wondering whether they did any other tests besides the chest CT to determine what the masses were??

I have posted quite a bit about my particular situation, so you can go back and read them if you are interested. I'm happy to answer any questions that you have.

I was 61 when I was diagnosed in the summer of 2017. My lower left lobe was removed in Sept 17 with an 8+ cm mass. My upper right lobe was removed in Oct 17 with a 9.5 cm mass. That was followed by some chemo. My breathing is okay and I go to the gym regularly, work full time in a school with children, etc. I go back every 3 months for CT scans..I was NED up until the last scan in Oct. They saw some new nodules and some change in previous nodules..I choose to believe that on my next scan they will have disappeared. There's a lot of wonderful people on these forums that will help you through every step of the way. Read up as much as you can and do not go to your appointments alone. It's very difficult to absorb all the information that they throw at you. Don't hesitate to ask any ??

 

Best,

Ro

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Hi Lisa and welcome,

 I had a right lower lobectomy in November 2016, when I was 71. Diagnosis was adenocarcinoma stage 1a. Prior to the surgery I had no breathing problems. My O2 sats were routinely 99%. My pre-op lung function tests showed normal lung capacity. My surgeon told me that unless I was plannig to run a marathon, I probably wouldn't notice any differences in my breathing and  i generally haven't. Sometimes my O2 is 98% now.  I'm not sure if/how things would be different for you, having asthma. Your surgeon or team should be able to give you some idea about it.  I would expect, though ,that you'd be able to work after surgery (unless your profession is long-distance running!)   Let us know how we can support you.

Bridget O

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Hi Lisa,

I am very sorry to hear about your diagnosis.  Thank God for the unexpected trip to the Emergency Dept.  You are in good hands in this forum.  There’s so much knowledge to help you learn how to ask the right questions and most importantly have hope.  

Tom’s Top Ten List is spot on.  Having the calendar really helped us as our brains were scrambled eggs when I was diagnosed recently.  

One test at a time, one day at a time.  You will be in our prayers.

Michelle

 

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Hi, Lisa,

I'm in South Jersey, myself, and I got my treatment at the MD Anderson Cancer Center at Cooper in Camden.  They have been GREAT.  I don't know a lot about Penn's cancer program, but if MD Anderson hadn't been here I certainly would have considered Penn.  Unless there's something odd about your cancer, with an early "catch" you don't necessarily need the most highly specialized cancer center.  

I was in a lung cancer screening program when my cancer was found.  I had a lobectomy in July 2017 (using VATS, which is a laparoscopic surgical procedure), and the cancer turned out to be Ib.  I have needed no further treatment; I just go for scans twice a year.  My surgery and recovery were pretty simple and I honestly feel the same now as I did before the surgery.  No impairment of breathing.

Welcome, glad you found us.

Teri

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Lisa,

My mom had an upper, right lobectomy in January 2016.  No doctor could tell us how well she would breathe afterward.  During my research, I found many, many stories of those who saw little to no change in their breathing after removing 1 lobe.  My mom isn't a common case as she actually breathed better after surgery.  She has COPD and most of the emphysema she had was in the upper, right lobe.  So that was a nice surprise for her!  Life really isn't any different after her lobectomy (she has other lung cancer related issues, but nothing drastic from the lobectomy).  She has periodic pain at the site of her incision (she did not have VATS, so her incision is very big) and periodic nerve pain in her right shoulder blade.  She also can't sleep on her right side because it feels like she is suffocating.  Other than that, she wouldn't know her lobe was removed.

And to give you some context, my mom was 62 at the time of her lobectomy.  She is overweight and has a multitude of other chronic conditions like rheumatoid arthritis and diabetes.  So, she was not in perfect heath prior to the surgery, but did fine.

I hope this helps relieve some of your trepidation.  We are all here for you as you navigate this stressful situation.

Take Care,

Steff

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Thank you ALL for your replies, it really helps me to have people to reach out to about this. My PET scan is Wednesday I should have more information to share that afternoon as I am meeting with a surgeon to discuss the scan a few hours later in the afternoon.  I am seriously so afraid of the unknown and feeling so much depression right now.  I am guessing it is normal to ask "why me?" and to ponder why you didn't do all the things that you wanted to do.  I will post again on Wednesday night. Lexie, I didn't even know that there was an MD Anderson here in NJ. I wish I would have known that before starting with U Penn. U Penn has stellar ratings (#10 in the US) but MD Anderson is obviously the best. Maybe I should make an appointment there for next week to discuss their viewpoint?  

-Lisa

 

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Has anyone proposed a biopsy?  Or does the location of the UR mass not permit it?  The nodule in the lower lobe is, I suspect, too small to biopsy, and it might very well be nothing to worry about--most nodules are not cancer.  I suspect the 5 cm mass is what they are concerned about.  And that is big enough to biopsy although sometimes the location doesn't allow it.

Totally up to you, of course, but at this stage of the game I don't know that a second opinion is necessarily called for.  Penn is a big enough teaching hospital that lung cancer treatments (including surgeries) are pretty routine, I imagine.  What I like about the MD Anderson Cancer Center at Cooper is that it's so "user-friendly"--they have a couple of locations for my followup scans and the facility in Camden has free valet parking for patients, which is a nice touch.  I find it easier to get to than Penn is (I've had other non-cancer procedures done at Penn).   I think you should be able to get excellent treatment at either hospital.  It's really a matter of personal preference.

Oh, I should mention, my surgeon at MD Anderson is the coolest, most awesome doctor I've ever had for ANYTHING.  If you wind up going there, let me know and I'll give you his name.  He gave me his personal cell phone for any questions/issues and was just terrific.  I see an oncologist now for my followups, but I wish I could have kept seeing my surgeon!

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Lexie, since I am seeing the surgeon for the first time tomorrow I am waiting to hear the plan. His PA mentioned that a biopsy has it's own risks and that often just proceeding with the lobectomy with pathology after surgery is the way to go.   Again, I'm not sure why. I am familiar with a biopsy first, surgery second. But if it gets this out of me sooner, that is a good thing too

 

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Well, a biopsy probably isn't critical--with a mass that size, I imagine that makes it suspicious enough they would remove it regardless of what a biopsy might show.  My own nodule was quite small, but because it was "spiculated," it was considered suspicious enough to warrant surgical removal without further investigation.

So I wouldn't worry if they don't do a biopsy first--I was just wondering if that was in the plan.

Be sure to ask if you're a candidate for VATS (or the similar robotic) surgery--it is MUCH simpler, less painful, and results in a quicker recovery.  It can't always be done (depends on the size/location of the tumor), but if it can be, that's definitely what you want.

Keep us posted!

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What a stressful day yesterday was!  By the time I got home from a 2 hour drive from Philly in rush hour traffic I needed to eat and crawl into PJs.  The official reading of the PET/CT will be available today from the radiologist. A PA is supposed to call me with the those final results. However, the lung surgeon I saw yesterday did his own preliminary reading on the PET/CT though. He isn't convinced that it is actually malignant due to the borders of the 5cm mass (lobulated, not spiculated) and the way it "lit" up (weakly, not bright). He also sees a calcification within the mass. So instead of going right to surgery he now wants to have a biopsy done to see what we are dealing with and then make decisions.  The unknown is so unsettling! Especially during the holiday season when emotions are already riding high.   I must have cried a dozen times yesterday.  The good news is, there are no other lesions or affected lymph nodes no matter what the findings turn out to be. So I'm hanging onto that.

Prayers and good thoughts this way please.

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Sounds like good news, so far.  Yeah, under those circumstances a biopsy makes sense.  

Agreed, the waiting for tests and to find out stuff is one of the most stressful aspects of this.  Hang in there.  Remember, even if the biopsy shows a malignancy, the surgery should be simple and it looks like there are no signs anything has spread.  All stuff to feel hopeful about.

Oh, and I know what that traffic around Penn is like--it's one of the reasons I was happy to be on this side of the Delaware.  :)

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So I got the final results on the PET scan from the radiologist and they said the SUV for the 5cm mass is 2.4.  2.5 is the cutoff number for benign vs malignant. Malignant is 2.5-15 I'm told.   So it's right on the border ... I just can't wait to get this biopsy done! 

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Sending positive thoughts (or maybe that should be NEGATIVE thoughts in terms of biopsy results).  Just keep reminding yourself that whatever the result, you will be OK.  You caught it early, and that's more than half the battle.

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