Crap...

[ColleenRae]

Need some advice... I am getting a PET scan tomorrow (anxiety enough with this) as I have an approximate 8-9mm tumor in upper left lobe we've been watching for a few years now.  Radiation (SBRT) is/was going to be my next step and one of the the RO's I consulted with wanted a PET done as there won't be any biopsy to confirm this is cancer, to check lymph nodes, etc.

Does anyone know if breast cancer will show on the PET?  I had an annual mammogram this past Monday and just got a call - they found a couple of suspicious nodules in left breast that weren't there last year. They wanted me in as soon as possible, so going back on Friday for more tests.  They said they should be able to tell me something following those tests.  I'm TRYING not to freak out, but I'm pretty down. My son is down (and I keep apologizing to him as if I have control over this!).  I have never had a questionable mammo before - and there is family history - so I am feeling a little nauseated with fear.

Telling myself to wait and see is difficult. The call from the imaging clinic came just as I was about to call and discuss treatment schedule with Seattle Radiation Oncologist's office. I can't decide whether to go to Seattle for SBRT or to stay closer to home about 45 minutes away... which would be much easier for me. Cancer care does not have a good reputation in our city. Now I'm afraid I'll be dealing with two cancers at once and I don't know how I could travel to treat both.  Has anyone else ever faced treating two cancers (hoping this isn't something that metastasized) at the same time? I'm scared. Trying to do LC alone is hard enough. Not sure how I am going to do this if breast cancer comes into play as well.  Thank you!!!

 

[Karen_L]

Oh, what a worry, ColleenRae. Take deep breaths, cry, take some more breaths. And please try not to make decisions about a treating a cancer you don't know for certain you have. 

Active cells, like cancer cells, which are more active than normal cells, absorb the tracer material of the PET, which also reveal areas where the lung cancer may have metastasized. The difficulty is, sometimes areas that pick up the tracer might not be cancer, so further diagnosis is needed. The area in my lung that lit up in my last PET was one that had been treated, so the radiologist who treated me told me she wasn't persuaded it was cancer. I had a bronchoscopy; it turned out the area of concern was just badly inflamed from leftover pneumonitis. So even if something showed up in your breast, you don't know what it could be. Also, I don't know whether a PET is usually considered a standard for diagnosis in breast cancer.  My mom had needle biopsies done to confirm her breast cancer diagnosis.

I suggest you get as much information as you can about what you know about right now. For example,

• Have you spoken to the imaging people to find out exactly what procedure(s) they will do to be able to give you a diagnosis so quickly? Have you looked up (on reputable sites) what is involved with those procedures? 
• Do you have a general oncologist who is coordinating your lung cancer care who might be able to give you guidance? 
• (Are you on one of the islands that calls for taking a ferry to get to the mainland? Isn't Bellingham, the city in your info, close to Seattle? Perhaps it would help your fear to call Seattle and ask exactly what would be involved in scheduling and receiving SBRT treatment?)
• When you say cancer care has a "bad reputation," what cancer treatment facilities does this refer to? Have you researched what the places are? And, where'd you get your info? I have a friend who was treated at a supposedly great cancer center and it turns out it wasn't great for him-- he changed not only doctors, but also institutions. 

Just hang on until you get more information. In the meantime, can you do some stuff that can help you shift your focus, even for a moment? Exercise? Go for a walk? Meditate? 

Thinking of you and sending strength.

Karen

 

 

[Tom Galli]

Oh my ColleenRae, What is that old proverb on how to stop 2 instances of bad news from turning into 3? Is it break a chopstick?

I agree with Karen. Let us not put the cart before the horse. I wouldn't know if a PET scan can accurately report on breast tumors but I bet the PET technician administering the test knows. Ask him or her.

Believe me, I completely understand freaking out. I've been there but let's exhaust the old step-by-step, inch-by-inch diagnostic shuffle before we leap to conclusions.

Recall, you had many difficulties with your surgery and we sorted those out. We'll do the same for this testing anomaly and we'll cross that bridge when it is necessary.

Stay the course.

Tom

[Scruboak]

Coleen Rae, I don’t have any good advice about freaking out except that I know it helped me to just be heard. I hear you. Love from Suzan

[LouT]

ColleenRae,

I fully understand you being upset.  But you know you're hearing the right coaching right now; "get through the diagnostic process".   It's one of the worst parts of any type of potential cancer situation, but the mammogram and family history aside, you won't know if you have something of concern until all the results are in.  Please do your best to divert yourself...a good movie, visit with family/friends, a concert....whatever can make you feel better and get lost in the moment.  The tests will come and be analyzed and you'll know soon enough.  Between now and then there is little to nothing you can do to change the outcome so the more you can do to find peace, the better.  Know that we are all pulling for you and sending up good thoughts, prayers and wishes...

Lou

[D iane]

Hi.  Just chiming in as a breast cancer person.  I don't like the word survivor, because until something else kills me, I don't know if I survived the cancer.

PET is not a standard in diagnosing breast cancer.  Only if you are metastatic (Stage IV) do you get PETs. Friday they will most likely be doing a diagnostic mammogram and probably an ultra sound.  I would ask if the stuff they give you for the PET is sensitive to these images.  You wouldn't want that.  Hopefully it's out of your system by next test time. The radiologist will read them and then come talk to you.  There is a scoring system (BIRADs) Depending on your score will determine next steps.  A 1 or a 2 is good, a 3 is see ya in 6 months, there are 3 levels of 4 which means biopsy and lots of time these turn out to be benign.  A 5 of course is not so good.  Wishing you the best on both.  That's a lot going on!

[Judy M2]

Colleen, my primary doctor told me I no longer need mammograms because I'm getting regular PET scans. 

A couple of years ago before my LC diagnosis I had something show up on a mammogram that they wanted to do a biopsy on. Immediately I was given a nurse navigator and a lot more attention than I've ever gotten with lung cancer. After an uncomfortable biopsy procedure (raising my arm above my head for more than 40 minutes killed my shoulder), it turned out to be no more than a benign cyst. 

So one step at a time. Hope this is just a blip. Fingers crossed. 

[ColleenRae]

On 2/9/2022 at 2:32 PM, Tom Galli said:

"Recall, you had many difficulties with your surgery and we sorted those out. We'll do the same for this testing anomaly and we'll cross that bridge when it is necessary.

Stay the course."

Tom

Dearest Tom ~ All of those "we" statements in your supportive response brought tears to my eyes and a heart full of hope. Thank you. That meant a great deal to me! 

You really are my rock and and an anchor for so many of us. I'm sorry you had to gain experience in this journey, but how blessed we all are that you share what you've been through and what you've learned.

[ColleenRae]

Thanks to ALL of you for your encouraging and informative responses to my post... I was (obviously!) very stressed out.  I was certain the news was going to be bad.  I don't think it's necessarily that I had or have a negative outlook - I think it's how I cope and prepare myself in the event news might be bad.  I have to think of the worse outcome... just in case. If the outcome is good, well, then I'm overjoyed!

Good news did arrive.  Since I turned to this forum in my fear, I need to update you on my joy now as well.

I had the PET CT last Thursday.  Friday I went for the additional tests the doctor requested following my mammogram last Monday.  I did not expect the PET results to arrive until after the weekend, but the report was sent to one of my patient portals Thursday night.  I decided NOT to view it, although I wanted to know the results so badly. I was exhausted and afraid of what I might find out during Friday's tests, so I told myself to just put it all out of my mind. Amazing how the mind works. I actually did a pretty good job of that.  (Lou, you'll be happy to know that I took some of your advice by spending time with my son and then losing myself by binging on a Netflix series that completely took my mind off of my worries!).  I woke up Friday a.m. and debated whether or not to open the online test results, but surprisingly told myself I'd rather wait until the R.O. that ordered the PET called me with the results.  I was actually pretty calm. Complete change from how I felt when I posted here.

Emotions did catch-up with me though while waiting at the breast imaging clinic.  I had the first test, then they said they wanted to proceed with an ultrasound. The technician was very good and reassuring. My "normal" experience is they don't reveal anything while doing the tests, but the tech I had was commenting on several things.  I wasn't sure what the outcome would be and didn't want to get my hopes up.  I was left in the exam room alone while she met with the doctor for about 10 minutes. She came back in and said everything was fine - all looked benign (D iane - Birad 2 - thank you for your post!)- and I wouldn't need to return for 12 months at my next annual mammo.  I'm just full of cysts.  I burst into tears. It hit me, then, how stressed I had been feeling... and how grateful I was for this bit of good news.

I returned home and shared the good news with my son. I decided to be "brave" and review the PET CT results. Just took a deep breath and told myself that I could deal with whatever it showed.  Once again, I was filled with gratitude. Nothing lit up on the PET CT, not even the LUL tumor we're going to zap, which surprised me as the last time I had a PET CT was for the small nodule on my RUL prior to my lobectomy - and it lit up quite a bit.  I know this doesn't change anything, but I was relieved to know that nothing else showed metabolic activity. 

I have since spoken with my "clinical team" and their advice is that I continue to move forward and schedule SBRT for this small tumor on the LUL.  This "team" is associated with the Seattle medical oncologist I turned to last year.  Tom Galli - you are so right in encouraging everyone to connect with a medical oncologist!  It is making a huge difference; I don't have to navigate this alone. As someone without a family (other than my son), it really helps to have a "team". Just saying "my team" makes a world of difference! The support from the U of WA / Seattle Cancer Care Alliance has been outstanding. I thought I was going to have SBRT done closer to home at another regional cancer clinic/hospital, but after the events of this past week, I've decided to go further south to Seattle once again for care. Just their help and involvement this past week showed me the importance of having a reliable, involved care team behind us when we need it.  Today they contacted me regarding housing and travel information - even notifying me my insurance will cover hotel/housing costs if I need it... I had no idea. Life is good.

Thanks to all of the responses all of you sent, as well.  I now feel foolish for being so afraid before I even knew anything... so thank you for the encouragement.  I think this showed me that my anxiety is still high regarding cancer - even when I think I have it under control. I obviously don't, but thank you for "listening" to my fears and for the help!

[ColleenRae]

On 2/9/2022 at 3:44 PM, Scruboak said:

Coleen Rae, I don’t have any good advice about freaking out except that I know it helped me to just be heard. I hear you. Love from Suzan

Thank you, Suzan... I appreciated being heard (even if I was prematurely whiney!) Love from me/Colleen

[ColleenRae]

On 2/9/2022 at 2:16 PM, Karen_L said:

Oh, what a worry, ColleenRae. Take deep breaths, cry, take some more breaths. And please try not to make decisions about a treating a cancer you don't know for certain you have. 

Active cells, like cancer cells, which are more active than normal cells, absorb the tracer material of the PET, which also reveal areas where the lung cancer may have metastasized. The difficulty is, sometimes areas that pick up the tracer might not be cancer, so further diagnosis is needed. The area in my lung that lit up in my last PET was one that had been treated, so the radiologist who treated me told me she wasn't persuaded it was cancer. I had a bronchoscopy; it turned out the area of concern was just badly inflamed from leftover pneumonitis. So even if something showed up in your breast, you don't know what it could be. Also, I don't know whether a PET is usually considered a standard for diagnosis in breast cancer.  My mom had needle biopsies done to confirm her breast cancer diagnosis.

I suggest you get as much information as you can about what you know about right now. For example,

• Have you spoken to the imaging people to find out exactly what procedure(s) they will do to be able to give you a diagnosis so quickly? Have you looked up (on reputable sites) what is involved with those procedures? 
• Do you have a general oncologist who is coordinating your lung cancer care who might be able to give you guidance? 
• (Are you on one of the islands that calls for taking a ferry to get to the mainland? Isn't Bellingham, the city in your info, close to Seattle? Perhaps it would help your fear to call Seattle and ask exactly what would be involved in scheduling and receiving SBRT treatment?)
• When you say cancer care has a "bad reputation," what cancer treatment facilities does this refer to? Have you researched what the places are? And, where'd you get your info? I have a friend who was treated at a supposedly great cancer center and it turns out it wasn't great for him-- he changed not only doctors, but also institutions. 

Just hang on until you get more information. In the meantime, can you do some stuff that can help you shift your focus, even for a moment? Exercise? Go for a walk? Meditate? 

Thinking of you and sending strength.

Karen

 

 

Thank you for your generous, caring reply, Karen!  I did - eventually - shift my focus. "If only" I had done so before I posted... I just needed somewhere to vent my fear. Maybe journaling would be a better choice next time until I really know what I'm up against!

RE:  PET CT... Yes, I've come to understand what the PET will /won't reveal. It just happened I had that scheduled (for LC) following my suspicious mammo.  All ended up being well.

I have a terrific medical oncologist who is, unfortunately, moving to the East Coast this month.  He's been outstanding, but his clinical team has been really amazing as well. Very responsive and helpful. Not sure who I'll have once he is gone, but I have a lot of faith in the clinical team and their associated radiation oncologist I'll be seeing for SBRT.

No, not on one of the islands, thankfully, so I can drive to Seattle for treatment.  I've been going to Seattle since 2017 for my cancer care / follow-up. I have a pulmonologist I got established with prior to my lobectomy; just in case needed. They made recommendations I did not agree with or follow in the earlier days of my diagnosis, but I continue to have my Lung CT's sent to them to keep them informed. I had a lobectomy in Oct 2018 at Swedish. Great surgeon, but I switched to Seattle Cancer Care Alliance/UWMC last year knowing my lung cancer will likely recur in the years to come.

Now I have another nodule (8mm) we've been following since 2018 in the upper left lobe that I can have either surgery or SBRT for.  I have decided to go with SBRT to preserve more lung tissue (hopefully). I was trying to decide between Seattle or Mount Vernon for SBRT.  There is a great RO in Mt Vernon I've seen. I could drive to/fr each appointment if I go there with no need for a hotel.  I will need a short duration of SBRT (4 sessions, every other day - so M,W,F and M). If I go to Seattle, that will entail a lot more driving. Not sure I have the energy to do that. I remember when I could drive from Seattle to Bellingham in 90 minutes. Now, it can take 2-3 hours if there is an accident. I can't drive after dusk (cateracts), so I'd likely opt to stay in Seattle for treatment, coming home on the weekend and returning to Seattle for the final treatment. The RO in Seattle did give me the choice of receiving SBRT 4 days in a row, although he preferred spaced out tx and I agreed. I am also a single mom to an adult son on the Autism Spectrum. So, I have to take his needs / my responsibilities towards him into consideration when I am making treatment decisions. It's just the two of us. He could stay at home but prefers to go to Seattle with me. Exposure to COVID is also a concern - whether I travel to the regional clinic or go to Seattle. Not sure which would pose the bigger risk, but I'm really looking to go where I feel I can receive the best possible care available to me at this time. I know there will come a day when I can't get to Seattle for treatment. I'd like to take advantage of being able to get excellent care from those who do nothing but treat lung cancer while my cancer is small and manageable and I can get down there.

I'm not sure what the "problem" is or why the reputation is not the best for cancer treatment where I live (heart treatment, on the other hand, is supposedly excellent).  Without fail, anyone I have ever spoken with locally (including medical personnel), has encouraged me to "go South" to Seattle for cancer care.  Even one of the pulmonologists I spoke with (he has cancer) said he is receiving treatment at SCCA. The tech at my PET CT this past week said it was a "no brainer" to receive treatment in Seattle. I feel fortunate that, at this point, I can even have the choice and ability to travel to obtain treatment and care. I am sure there are some very good individuals locally who are involved in cancer care, but my experiences here have not instilled a lot of faith or trust on my part. I loved my surgeon at Swedish. If I chose surgery again, I would likely go to him once more. I had some difficulty with the SCCA LC early detection and prevention clinic in the beginning years, but I have been very pleased with my medical oncologist and the clinical team since last year for my follow-up's. Yes, it would be so much easier to stay home / local, but I'm very grateful I have access to remarkable care not too far from home.

Thank you for your suggestions and for taking the time to post... It is appreciated.

[ColleenRae]

On 2/10/2022 at 11:32 AM, Judy M2 said:

Colleen, my primary doctor told me I no longer need mammograms because I'm getting regular PET scans. 

A couple of years ago before my LC diagnosis I had something show up on a mammogram that they wanted to do a biopsy on. Immediately I was given a nurse navigator and a lot more attention than I've ever gotten with lung cancer. After an uncomfortable biopsy procedure (raising my arm above my head for more than 40 minutes killed my shoulder), it turned out to be no more than a benign cyst. 

So one step at a time. Hope this is just a blip. Fingers crossed. 

Your post DID help me to calm down... so thank you for sharing. Thank goodness for benign cysts...! Yeah!

[ColleenRae]

On 2/9/2022 at 5:18 PM, LouT said:

The tests will come and be analyzed and you'll know soon enough.  Between now and then there is little to nothing you can do to change the outcome so the more you can do to find peace, the better.  Know that we are all pulling for you and sending up good thoughts, prayers and wishes...

Lou

Lou - You have been such a cheerleader for so many people on this forum for a long time now... Your support to others - and me - is so refreshing and helpful! Thank you.

I really heeded your message of "there is little to nothing you can do to change the outcome". How true was that? It didn't matter what the outcome was going to be, I couldn't control that. I think that is why I freaked out and posted so quickly - I realized I had no control (but I wasn't ready to accept that!).  Once I realized "it is what it is", things got a lot easier. I did what I had to do - albeit I had to divert myself by binging Netflix!  I will hold on to your wise words as I know there will be a next time!  You take care, Lou. Thank you.  Love - Colleen

[Karen_L]

57 minutes ago, ColleenRae said:

"If only" I had done so before I posted... I just needed somewhere to vent my fear. Maybe journaling would be a better choice next time until I really know what I'm up against!

ColleenRae, 

Although I love my journal, it's never thwarted a full-on worry session. Fear is a really important thing to share-- sometimes it helps if many people take a little piece of it, then it's less for one person, i.e., you, to bear.  Besides, if you can't freak out about cancer on a cancer discussion forum, then where can you? 

I'm not surprised people are urging you south-- the Seattle center (Hutchinson?) is one of the federally designated national cancer centers-- at least,  think that's the one you are referring to. If it were closer to me and I didn't have care that was working for me, I'd head there for another opinion. 

It sounds like you have a good team you trust. That's everything, as far as I'm concerned. And they even contacted you about housing-- I'm impressed. I appreciate your thinking about seeking the most knowledgeable/skilled care you can at this point in your journey. I keep telling my family that lung cancer is one sneaky <expletive deleted>, but I don't think they truly understand its persistent nature. That you do, and are factoring that in to your planning now, reinforces my own thinking, so thanks for that. 

I also understand the complication your son's circumstances present-- it's not something that's easy to add to all the other juggling , but it sounds like you're doing it with a degree of ease. 

I'm having a mammogram tomorrow-- part of my campaign to glow in the dark spontaneously (so many tests, so much radiation...). I was so tempted to delay it, but that wouldn't be very responsible. (I've already said "No thank you" to a followup endodontic x-ray.)  

Glad to hear you are in a better place today.

Karen

[ColleenRae]

Karen,

Thank you for your great post.  I saw your "cancerwords.com" link and have bookmarked it. Can't wait to read it - you are definitely a skilled writer. Entertaining as well! Profanity seems to work well many times for me!

Good luck with your mammogram tomorrow.  I get the campaign to glow in the dark... I'm surprised I still rely on nightlights in the house!

Appreciate your kind words.

[LouT]

ColleenRae,

Your post brought a huge smile to my face.  It was good news on all fronts and I'm so glad that you found ways to give yourself a break during the testing phase.  That is always such a tough time for all of us and you handled it like a trouper.  Please continue to keep us updated and I consider it my honor to be able to support you.

Lou

[Judy M2]

Colleen, so glad you had good news. Good luck with your SBRT treatments and travels. It's disruptive for sure but effective in the long run. 

[BridgetO]

Good news and good plan, Colleen! Hang in there!

[ColleenRae]

49 minutes ago, BridgetO said:

Good news and good plan, Colleen! Hang in there!

Thank you, Bridget.  Hope all is well on your end...?!

[BridgetO]

Thanks, Colleen, things are fine here. Still NED on all 3 cancers. Bummed out by the pandemic, of course, but isn't everybody?