Waiting and the Roller Coaster

Trailrunner4

I originally posted this in the wrong forum, so I copied it to paste here. I am 4 months out from bilateral mastectomy with reconstruction (bilateral breast cancer). It was determined that I didn't need radiation or chemotherapy because even though I had a lot of cancer in both breasts and nipples, the margins were clear and there was no evidence of lymph node involvement. The breast cancer surgeon gave me wonderful news in March that my cancer has an ultra low risk of recurrence and I would likely not see it again in my lifetime. Even so, I am dutifully taking my Tamoxifen and will for 5-10 years because I have genetic susceptibility to the cancer.

I am now 2 1/2 weeks out from prophylactic salpingo-oophorectomy because of my genetic susceptibility to ovarian cancer. With the news that my breast cancer has an "ultra low risk" of recurrence and the news that my ovaries were all clear, I have felt excitement about my future and I'm ready to move forward with plans for the future - training with Search & Rescue, new job, moving, lots of good stuff. All I've talked about it is how I'm on the other side of all of this and ready to move on.

So, imagine my surprise when I happen to reach over and find swollen, hard axillary lymph nodes next to my right breast implant on Wednesday of this week. I'm not panicking and I think I'm learning that with cancer, there are no absolutes. I can't make definitive statements like "it's over." Maybe once you've been diagnosed with cancer, it's never totally over even if you don't have a recurrence, because every time you find something like a lump, the roller coaster starts all over again.

Now I have to wait. I was fortunate to see my breast cancer surgeon the same day I found the lumps and she felt them too. She is surprised and concerned, but she's hoping that because I just had surgery and a post-surgery infection, that maybe the nodes are just swollen from dealing with the infection. She has me waiting 2 weeks and then I start the diagnostics...first the ultrasound and then see her again. We might as well biopsy the nodes too so we know for certain.

I'm angry that cancer may have duped me into believing this was over and I could move on with my plans. I'm worried because if these nodes have cancer in them and the CT scan, MRI, and ultrasounds missed it, then where else could have been missed (I don't even want to think about it). I'm trying to learn a lesson to keep me off the roller coaster....trying to be practical and calm....if the nodes have cancer, then I will attack it head on and do what I need to do. But, shit. I was supposed to be free of this now. And the waiting....ugh.

Peppin

Hello Trailrunner, I sympathise and I feel angry, sad and cheated in the same way. Just when my life was starting over and I was tasting the sweetness of normality, my tumour marker went up. Off we go again! More tests, scans, waiting, worrying and waiting.....I also know the tumour markers are not reliable, so I could be worrying for nothing. But it's exhausting. I'm fed up. I guess it shall always be like this. I am determined that even if I have a recurrence I am going to try and live as best as I can and as normal as I can, until I can.

Sometimes I reason none of us will live forever. Why am I worried I am going to die? We are all going to die! Actually my only worry is my kids. I'd like to help them growing up. Other than that I live fully. Nobody knows what's round the corner. In a sense we who lived through cancer live always alerted to how precious life is. Today is precious. Today is all we have. We need to focus on today. 

If we have/get a recurrence, we are just going to have to face it. If we don't we can once again enjoy that sweet feeling of being out of it. Ah what a lovely feeling that is! I wonder if I'll be in that state again even for a short while.....It's all very intense.

I wish you all the best. Have faith. Until there is a definite result, it is all fear in our mind. We have to learn how to control that fear. May be there are others here who can share how they get through the waiting?

Trailrunner4

Thank you so much for responding Peppin. I was starting to feel a little lonely.

I had a similar reaction over the weekend. I was determined to get my life back no matter what. So I did things all weekend that make me happy and even blew off my cancer support group because I was fed up with talking about cancer. It turned out to be a fantastic weekend and I learned something...we have to keep living. I'm sticking with my plans now, no matter what.

I read an article on this website about sticking with hormonal therapy and something I read resonated with me....it said to think of breast cancer as a chronic disease, like diabetes. That makes sense to me. There are going to be ups and downs surrounding this disease, including probably false alarms as we go, and if I think of it as a chronic disease that might rear its ugly head, then it seems less shocking.

I see my counselor this Friday and we've talked about making our session about how to cope with the ups and downs, the false alarms, and even the possible recurrences as I move forward in life.

I am angry too...and at times feeling more and more anger. I don't know what makes me angrier....the knowledge that I have to start the whole diagnostic process again and possibly finding cancer, or the waiting. The damn waiting!

Thanks again Peppin. Have you learned anything more about your tumor markers going up? Keep me posted and I'll do the same. I go in for the scans April 18th.

Jojobird

Trailrunner and Peppin, boy can I relate. The not-knowing is the hardest part. I'm working really hard on deep breathing and distracting myself -- there's always a drawer to organize, for example, or some work-related stuff to do.

I have been out of treatment for just over a year now, diagnosed about two years ago. My last MRI was two weeks ago and the doctor detected a "shadow" - a ghost, an unknown form - of 5.2 cm in my armpit, near where the original cancer began. CT scan said same. I've got a bone scan today and a biopsy next week, yet there is a small chance that this is scar tissue. And here is where the pendulum begins: the doctor said this, but it's possible that this. This, or this. Recurrence or scar tissue. Life, death. No, yes.

Hard to maintain in this swinging of unknowns, hard to go on. But go on we must, no? Going on, I tell myself, is an affirmation of the life I want to live, its own kind of defiance. And it's ok to cry.

Not the ride they advertised, ladies, but at least we're not alone. Love out.

Jojo

KBeee

Sorry you are dealing with this uncertainty. Hoping it is just from the infection. Let us know.

I work in fire/EMS too.

GreenEyes81

Hi Trailrunner4, you posted on my thread too. we are in simular boats as you stated. Hugs, we can do this! I'm usually strong when I have a plan. No plan...not knowing means I'm lost. 10 months ago my goal was to be sure to see my 12 and 13 year old sons graduate high school. With each month passing, I knew I was a month closer to that goal. I figured if I was within 5 years....worse case I was good. Now...not sure. Not within that 5 year window yet for my youngest...mentioned lump and got the red carpet. Trying not to panic.

Tomorrow it all starts...we shall see where we go.

Keep us updated....really hoping for the best for you and hearing how your story plays out.

Trailrunner4

You ladies are amazing and you're keeping me going and feeling supported. Thank you!! I'm thinking about all of you and hoping for the best outcomes for everyone.

I have one solid week to go before the ultrasound. I'm starting to resent the surgeon for making me wait.

BTW, one of the issues for me is keeping this quiet at work. My coworkers have had to pick up my work while I was out for two surgeries within four months. I go back to work ahead of schedule and everyone seems relieved that my health problems are over and everything can go back to normal. We're even going out for lunch next week to celebrate. I am dreading telling them that I might have to go out again for another surgery, radiation, chemo, whatever. I will still have enough FMLA to cover me (I think), so I won't lose my job (I believe), but my coworkers will undoubtedly feel this. We're a very small department and my counter part in the department has her own health problems and is out a lot. What a mess. I know I shouldn't worry about any of this, but I can't help but realize the impact this will have on them and the department.

Jojobird...any news on the bone scan? I'm thinking about you.

Trailrunner4

Well, tomorrow is the day I go in for the US and then follow up with the BS immediately afterwards. They will read the films right away so I'll know by the time I meet with my surgeon. But, as I said before, they better be 100% certain it is scar tissue if we're to do nothing further. Wish me luck!

GreenEyes81

good luck! Waiting is almost over!!

KBeee

Let us know how it goes. Thinking of you.

Trailrunner4

Hey guys, I'm finally back home. Long day with a bunch of medical appointments. I had the ultrasound on the lymph nodes. The doctor at the breast imaging center is pretty sure what we're feeling isn't nodes at all, but fatty tissue or scar tissue. Then I saw my breast surgeon who got the films and she agrees that it looks more like fatty tissue. To be on the safe side though, they want me to get an MRI, so I'm scheduled for next Tuesday. I feel a lot better. And as much as I don't want to get back in one of those dreadful noise machines, I'll feel better knowing for sure. They've assured me that the MRI will definitely tell us if there is cancer there.

Thanks for all the support! I'm sure I'll be back if the news from the MRI isn't good.

KBeee

Sounds very optimistic!

Trailrunner4

Yes, I feel confident now that it's not anything to worry about. I read the report from the doctor at the imaging center and she is calling is a fat necrosis and labeled it a Bi-Rads 3 which means a high probability of being benign. I know that the MRI found cancer in my right breast that had been cleared by the mammogram and ultrasound, so the MRI could find something or prove that it is cancer and not a fat necrosis, but given that the MRI and CT scan didn't find it just 4 1/2 months ago, I doubt it. On the plus side, if there is any cancer anywhere remaining surrounding my implants, then the MRI will find it. It will give me peace of mind.

GreenEyes81

That is really GREAT to hear Trailrunner. My MRI is Wednesday, hoping for clear results as well (no mets). My last MRI found lumps missed by the ultrasound/mammo.....deffinatly will give you peace of mind! Cheers to CLEAR results!

DebAL

green eyes, JoJo, trailrunner, peppin, just wanted to send positive thoughts and good vibes to you ladies. One of u mentioned focus on today and I agree 100%. Some days are definitely not as good as others. But embedded in those overall bad days think about what was good and treasure it. I'm getting better at being grateful for the little things that i never appreciated before. On the really good days I catch myself "forgetting". I'm a pre-op nurse on a busy unit and I love taking care of my patients. One of the wives of a deteriorating patient coming in for another surgery said to me " the first thing that Dave said when he woke up this morning is I sure hope Debbie is there today" Made my day. Next time he came in he arrived by transport, his wife had passed unexpectedly. Caring for him distracted me. Then a few hours later I "remember" that I have cinder block expanders in , shedding hair, and next round of chemo coming up the pendulum swings a bit. It personally gives me hope that I have those good moments and that those moments will happen for longer periods of time. Someone also likened breast cancer as a chronic disease and I agree. This disease has forever changed us but I don't want it to be all consuming for any of us. It ebbs and flows. I wish all of you the best as you await your testing. Hang in there. I hope it's a good day for all of you. I'm off to chemo and looking forward to good in this day

Trailrunner4

Thank you for the support DebAL. Your timing is good too because I just found out I have to have 2 MRIs tomorrow because they are concerned about getting a good reading on the supposed fat necrosis. As I talked to the technician, I felt myself reliving the terror of the original diagnosis (and the whole process leading up to the actual diagnosis) and I wanted to scream out that I won't do another damn scan or test or blood work, or anything! I've had it! Then there's the feeling of darkness settling in, even though I had a fantastic weekend and felt great all day until now.

I really do feel like I can't do one more test. And the thought of being in that damn machine that is so loud and scary. I hate it, I really do. Just knowing I have to do this, I can already hear that damn machine. It's like I have PTSD from all this.

DebAL

Trailrunner, the terror and darkness is so real and how quickly it can sneak in to an otherwise good day. I'm so sorry that you have to do 2 MRIs. Would they let u to take something to relax u a little b4 the test? I know the music headphones don't help much. Hopefully a they have a fan to circulate some air and u can keep your eyes closed and get through this. For me I had waves of fear when I found out oncotype results that pretty much determined chemo even though I was stage 1, grade 1 etc. All I heard was it was caught early. I learned it's much more about tumor biology. Each of us have our own fears with our individual journeys. You are not alone. I will be thinking of you as you get through this, and you will. Take care and i'm sending positive thoughts your way.

GreenEyes81

Thank you DebAL...beautifully put.

Trailrunner4

Thank you DebAL.

Galsal

Tomorrow is the PET/CT Scan. Yikes! I've asked almost every year since original BC diagnosis. Denied every time, it's only Stage 1, no Node involvement, etc. Then had a CT scan for totally unrelated purposes and it was seen there is thickening of the bone at the Sternum. Heck, my own Mother hasn't had a recurrence since her own Stage 1 BC in 1999.

Thanks for letting me vent!

DebAL

green eyes, sending positive thoughts and the "all clear" your way for tomorrow!!

KBeee

Trailrunner, hoping all gos well. Keep us posted.

Galsal, hoping your PET-CT comes back clear.

Galsal

The most wonderful news is that PET showed the Sternum is more likely to have been injured from the auto accident. Over the Summer I'll do another CT scan of the chest for comparison. HOORAY!!! Thanks for the good wishes!!!

Trailrunner4

Oh my gosh Galsal, that is great news!! I'm so happy for you. What a huge relief!

I just got home about a half hour ago after a marathon 3 hours at the imaging center. I was face down in the machine for over an hour. I won't ever allow that to happen again. In the future, if two scans are needed, then we'll have to do them on different days. Then I got stuck there for an extra hour because I either had a reaction to the contrast or I just developed vertigo because I was face down for an hour. Ugh! But now I'm home and I keep refreshing the reports page on the patient portal waiting for the report to hit. It's so late now, I'm guessing it won't be there until tomorrow, but I'll be sure to post the results.

Thanks for all the support!

Galsal

Keeping you in my thoughts, Trailrunner!

GreenEyes81

Galsal-- FLIPING FANTASTIC!!!

Trailrunner---I had a reaction last time for the contrast as well. I have to go to a different hospital that has an alternative contrast and taking 16 pills through out the day and 50 mg of benedryl tonight....hoping to prevent another reaction. lol Watching for an update!

Trailrunner4

I'm still in a holding pattern, waiting for the results of the MRIs. I don't want them to hurry, just get it right. :-)

Does anyone else do this? I went back to the ultrasound report and then googled the characteristics of the mass and found out that it is usually categorized as Bi-Rads 4, not the Bi-Rads 3 that my radiologist gave it. Gulp. She described the mass as a complex thick-walled cystic mass. But - thankfully - without associated vascularity and I think that's a good thing. It's not small either - 5.2 cm. I can't imagine that all my scans of 4 1/2 months ago would have missed a 5.2 cm mass if it was malignant. That's what I am holding onto. But I did read that a complex thick-walled cyst is concerning and should be biopsied or, at the least, monitored for changes. So even if I have the good fortune of it not being malignant, it might be something to monitor in the future.

I went back to my diagnostic MRI from October 2017 and noticed that it took them 2 days to release the report, so I might as well stop refreshing the patient portal page waiting for the report to hit. Who am I kidding? I'll keep doing it. LOL! Luckily, I have a meeting to in a few minutes to keep me busy.

KBeee

Galsal, Great news!

Trailrunner, Hoping you get good news results...soon!

Trailrunner4

The MRI report finally got released yesterday (Friday) late afternoon. The MRI downgraded the Bi-Rads from 3 to 2 and declared it a benign cyst!! Yeah!!! That was a huge hurdle. I had so much on hold for a month waiting to see if I'd have to go through all this cancer stuff again. It's cruel.

On another note, the report indicated that they made a mistake in doing one of the MRIs because my implants from reconstruction are saline, not silicone, so a half hour in the MRI was for nothing. Of course I'm relieved immeasurably about the benign cyst, but I admit I am angry that someone ordered the extra MRI and the technologist went through with it even though we discussed the fact that my implants are saline. I know mistakes happen, but how upsetting to be trying hard not to panic in that MRI tube and it was for nothing. Grrrr! I can't underscore enough how much we need to question these scans/tests.

Okay, bottom line...I'm okay! Benign cyst!!

Thank you everyone for your support. It helped me so much to read your supportive messages.

GreenEyes81

YAAAA Super excited for you Trailrunner!

KBeee

Great news!