Oh, no, not again!!!!

Fairchild

I don't know if this is a thing all of us experience, but I sure have.

I had a double MX last summer and chemo in the fall. Have been treated with Herceptin and Perjeta all spring, going until Sept this year. A couple of months ago I found a lump under one arm and, having been warned to report any new symptoms to the onc, I told the onc about it. Was sent back to imaging for an ultrasound, which showed it was probably scar tissue. But was so scared in the meantime.

Then I fell, hit my head, and knocked my darned self out. Onc sent me for a CT, which showed a mass in my brain. REALLY? They then ran an MRI, which was perfectly normal. But for that week in between, I was again a bit of a mess.

And this past week, my ob/gyn discovered that a cyst on one ovary, previously identified, had changed sizes. She thought it might be ovarian cancer. She ran tumor markers, which were perfectly normal. But in the interim, I was again terrified.

I know these are all things to be glad about. And I'm honestly no wuss. But it's disruptive as hell to be going back for follow-up tests over and over again. I can't help but think about the potential impact of another cancer, especially since I've had a previous cancer (bone tumor) that came back over and over. This is happening just as I feel like I should be focusing more on "real life" .... and preparing to put cancer behind me. But I can't with these episodes occurring over and over.

Have any of the rest of you had this kind of experience? How have you coped with it?

TB90

I think, from my experience on these boards, that almost everyone has had multiple scares after their original dx. My only advise is that it seems to get much easier over time. Each time you have a concerning symptom or test result, remind yourself of all the previous scares you experienced that turned out to be nothing. There is a saying here, "do not go there until you are there". These little reminders have helped me through the moments of panic. I have probably survived through about 200 recurrences at this point! Lol

AliceBastable

Well, I've had four kinds of cancers. I had a PET scan in early April that led to a biopsy of my (missing) kidney bed. I was pretty tense until I got the negative results. Overall, I'm more nervous about a new cancer than a recurrence, but I guess I'm in a position to get either. Whoopee. I TRY to not think about either, but some days it's not easy. And I tend to be a bad patient who DOESN'T go to the doctor unless I'm bleeding all over the floor, and I need to be more aware without becoming a hypochondriac. It's a strange journey we're on, and I think those of us who've had other cancers have a double mental whammy.

Meow13

The scare I had 3 years ago brought me right back to that horrible gut wrenching place. Severe panic feeling.

Fairchild

Thanks so much, TB90! That is really helpful to know!

Fairchild

Alice, good Lord, gurl! Do the doctors know why 4 cancers? When I was diagnosed they tested me for some genetic disorder, b/c of my hx of 2 cancers. I didn't have it, but they said it was important to check for it. Do you know if you have been checked?

Thanks so much for replying. Yeah, I know my history of cancer is one reason this episodes are hitting me so hard.....

Fairchild

Meow13, it's nice to know I'm not the only one to find the idea of more cancers as this scary! Thanks--

AliceBastable

Fairchild, I had genetic testing earlier this year - as much as my insurance will allow. No genetic links found. I think I'm just a crap magnet. My BS says I only get the silver medal, because she had one patient with five cancers. I'll happily settle for second.

SophiaMarie

Your experience sounds so familiar... I just had a weird brain/near passing out kinda thing, just before my yearly onc appt, so it led to an mri. Was fine, but I was nearly out of my mind with panic. Now I've had ovary pain for over a month... post menopause, not the best thing... going in on Tuesday. Hard not to let your mind go to the worst! We've been through it once - and have become fully aware of how mortal we are, so of course, why couldn't it happen again. You should search for my thread “always in the back of your mind" - I should get the link... someone wrote an amazing post on what we deal with..

Here -

https://community.breastcancer.org/forum/7/topics/871606?page=1#idx_25

momand2kids

In my mostly rational moments, I think about how lucky I am to have good doctors, good health care and quick responses. BUT, there is no getting around the fact that these things do cause fear and we all know better than most what happens when the dx becomes reality.

5 years after bc I had shingles (stress related) as they resolved there was a cough that would not go away. Dr. had me do a ct scan that led to thyroid cancer (surgery). Along the way, one of the scans showed a nodule on my lung (totally and completely freaked me out!). So I had the thyroid out, then had to deal with the lung nodule (followed for at least a year). The only benefit was that I knew enough to negotiate my lung CT follow ups to be every 6 months instead of every 3 (of course it helped that the pulmonologist didn' tthink it was anything-and they were right). But I was so flipped out about the lung nodule, I could barely see straight--

then of course 3 weeks ago (5 years after my thyroid dx) I found a strange thing on my skin- went to my derm (who I already see every 6 months for a skin check) and ended up with a melanoma (blessedly super early ) but now I have this big scar on the back of my arm) And last week, he took another mole off- called me and said it was NOT melanoma but they want a larger margin so I have to go back in to do a re-excision next week).

Right after my bc dx I was out with a friend who introduced me to her friend who had had bc. This woman then proceeded to tell me that she also had colon cancer twice. At the time I was horrified--who on earth has cancer 3 times??? Well, turns out I did..... I think of her often.

I would say that most days I think that these were 3 isolated incidents and how lucky am I that all were discovered very early ( and 2 of them found as incidental findings while taking care of something else).

However, I have to have my colonoscopy in July, mammogram, pcp visit, gyn visit-- these are things that most everyone does, but for me (and I think all of you) they are fraught with "more".... In my case, I have never fallen on the good side of the stats (80% of breast lumps are benign, 95% of thyroid nodules are benign, most moles are not melanoma). At the same time, my breast cancer was a slow grower, thyroid cancer was small and melanaoma was really contained with very little cell mitosis.

So, I vascillate between being pissed off that these things have happened and feeling so fortunate to have great care and lots of early detection. I just think this is normal and as some have said, it fades. I almost never worry about bc any more, just stay on top of my appointments and testing. I don't worry too much about the thyroid because it is rare for that to recur. Now I am trying to manage my worry about melanoma even though surgeon says there is nothing to worry about.

this is along way of saying that bc does change us a little. We no longer have "innocence" when it comes to going to the dr. Do you remember when you would just go to the dr because it was a well visit-- just run in, do some tests and leave? Never even thinking that something could be wrong? That was me right up until my bc dx-- for the most part very healthy.

I still see myself that way-this very morning at the physical therapist (for a hamstring thing) I checked "completely healthy" on the paperwork-- I cannot control all that happens but I have decided to control my own attitude and approach to it. I go the visits, do the tests-- never miss any of them--- I dread them--- but I do them anyway and just try not to worry about something that has not happened yet (although I am a champion worrier).

Today I am just happy to only have a pulled hamstring!!!

edwards750

mom - bless your heart you have been through it. So far I’m only dealing with BC. I get the fear factor as I’m sure most of us do. We are branded with the C word. Enough said. We will always be looking over our shoulder for the rest of our lives. That’s the reality of it.

I try not to scare myself every time I go for my annual mammogram which is coincidentally scheduled for tomorrow but I do still go into major anxiety mode. To be fair I am the poster child for worrying anyway.

I do remember just going for doctor’s appointments never even considering I might get a cancer DX. Those days are obviously over.

Women whom I have talked to who have had a recurrence say they have been through it before so they are “prepared.” That would so not be me.

Diane

edj3

momand2kids, you wrote:

Do you remember when you would just go to the dr because it was a well visit-- just run in, do some tests and leave? Never even thinking that something could be wrong?

So true. For me, it wasn't the breast cancer as I've mentioned elsewhere that changed this for me, it was the melanoma. The only reason I was so faithful about getting my skin checked every year was because a much loved mentor in college died from melanoma, and it wasn't a good death. So that's the one I've always feared even though on the face of it, I have very few risk factors. I had dark hair (color it now), dark eyes, I don't burn easily, I didn't get many burns as a kid and I never really got into tanning beds (I found them boring). So I was gobsmacked to have a melanoma on my back. Like you, my margins were clear so all was well. But of course I'm on the six month plan for five years and I do get very very nervous for those checks or when it seems a mole has changed.

Flash forward to last May, and I fractured my pelvis, which I also could not comprehend. In fact I told the orthopedist she was wrong when she called to tell me that. But I had, and I'd done it from over training. And then the DEXA scan showed osteopenia. Boy did that put me in a tailspin, which may sound silly. But hear me out, we all have mental images of who and what we are, and mine's all about being strong RAWR I can do things myself. Only apparently I can break my bone without falling or being in an accident. Not the kind of RAWR I want at all.

So then this year, when events moved super fast from 3D mammo to come back please diagnostic mammo plus ultrasound to biopsy. I remember lying on my side while she got things ready to do the biopsy and she said something about the 80% are benign and I said yup, I'm sure it's nothing. But then again, I thought the same thing about the melanoma and the fractured pelvis so I'd better get this checked.

I don't feel so RAWR these days. While I'm not physically fragile, emotionally I definitely feel tattered around the edges and like the rest of you, don't want to be living in fear of something coming back. That is such an unrecognized cost of this breast cancer and I'm not entirely sure how to navigate through it.

TB90

The absolute torturous moments for me are returning to that ridiculously inadequate cubicle following my mammogram of my one remaining breast and waiting to see whether I get the “you are good to go” or “we need another look”. I cannot even find words for what those ten or so minutes do to me. If all radiologists and technicians experienced this even once, this horrific process would be eliminated. I speak up at each and every experience hoping to affect change.

momand2kids

Ed

I agree- the melanoma was the outlier-- there was really no good reason for me to get melanoma--but if bc taught me anything it was that there is no rhyme or reason. I sometimes feel like these things happened to someone else. My lumpectomy scar is really faded,cannot even notice. My thyroid scar is "amazing" according to all my doctor friends- really cannot see it at all- and even this new melanoma scar on my arm, pretty impressive and I can see how it will fade over time. So, most days, even with this crazy history, I don't think about cancer that much. My kids were 7&12 when I was dxed--I got to see both of them graduate from high school, one from college and I will get to watch the other one start college. I have achieved many of my professional goals and am very happy with most of my relationships in life--so overall, I feel pretty damn lucky. I see so many people in my friend/colleague group who are struggling with all sorts of things--no one escapes these things-- if it is not cancer, it will be something else. It often does not seem fair, but then again, life is not fair (as I like to tell my kids).

I don't live my life with cancer since as far as I am concerned, on each occasion, they have taken it out and it is gone.... everyone has to cope with this in whatever way that works for them.. and this works for me.

About 2 years after my bc, they found a cyst under my arm in my mammogram. I freaked out. then I pulled myself together and realized "I know what to do, who to call, what tests to get" and that was the most empowering moment I have ever had.... and I had the same experience with the thyroid and melanoma. While I wish it was experience I did not have, I am grateful to have it because as we all get older, things will happen and to have the knowledge, contacts and ability to advocate for ourselves is really our most powerful skill.

Fairchild

Hey, y'all are frigging amazing. Honestly. It really helps to know that others have similar experiences, although God knows you've had more thrown at you than I have.

Can I ask another question? How long did it take you to get your energy completely back after BC? Mine was a BMX. Chemo was very hard, but he warned me it would be, and I had enough leave to take off for 4 months completely. Went back to work halftime in January, full-time after the implant exchange in March.

I probably seem ok to everyone else, but I don't feel it. Part of the problem is that I'm still having medical appts at the rate of 2-3 a week: Infusions at the hospital of my BC meds, eye exam, ob/gyn exam, oops need an ultrasound, new trip to plastic surgeon b/c of stupid stitches working their way out of my skin.... It really hasn't let up since March, though sooner or later I guess it will.

But in addition to this, I have a kind of fatigue that's unusual. At first, it was clearly a side effect of the chemo still in my body, back in Jan and Feb. Now I don't have further weight loss, and I don't think it's fatigue from that. But I will teach a 3-hour class in the early afternoon, and I feel exhausted afterwards, like I can't possibly work on the manuscript I'm supposed to write. (I'm a university professor and researcher.) I take an hour to try to get my energy back up, drinking another cup of coffee and talking myself into just trying to write. My doctor even gave me ADHD meds, which he said would help some with the chemo-brain feeling of fogginess that I've been trying to clear. It helps, but clearly it hasn't gotten me back to normal. My normal is a 60 hour work week. I'd bet I'm barely, barely doing 40 now, making up work I didn't complete on the weekend. And I'm now 6 months out from chemo (no rads in my case), almost a year out from the MX, and 3 months out from the implant placement surgery.

This isn't depression; I'm sure of that. I honestly don't feel sad at all, although these continual cancer work-ups because of oddities in test results are distracting and upsetting. But the problems with energy don't seem to me to be emotional. It's like suddenly running out of gas.

Do you have any idea how long it took you to get your energy up again? To get back to a normal rhythm in life?

momand2kids

Fairchild,

it sounds like you have been through alot-- I remember what someone told me at the beginning-that it would take a year before I felt like myself again--I remember being so wiped out after chemo/radiation-- and it did take almost a year AFTER treatment ended before I felt like myself again-- then I was able to schedule all of the crazy follow up appointments and the regular (dentist, eye, etc) at times that worked for me so I did not feel as though I was always in the dr (for example, except for this year, I make it a policy NOT to have dr. appointments in the summer-I work at a university as well and even though I am on a 12 month schedule, I just like to enjoy the summer).

What you speak of sounds normal given all that you have been through. I did not have an mx, but that is major surgery-- I think we don't give ourselves enough time to recover from these things.... a year is not al ong time after major surgery, major treatment and just the overall stress of having bc. Also, working 40 hours per week is still pretty good based on where you are in the process--maybe you should think 40 instead of 60 anyway? I have definitely embraced working "less" whenever I can......

Good luck

Fairchild

Mom, thanks so much for your response! I wish I had talked to more people about this recovery process, because I think I just didn't have enough information, you know? I got scheduled to pick up one class in January instead of our normal (2 classes), and agreed to it b/c I figured my chemo ended in December, so wasn't that what I was expected to do? I didn't really know that the chemo would continue to wipe me out, although I really should have. My onc didn't say anything when I planned to go back to work, and I assumed I had no medical reason to take off longer. Sigh. I might have inadvertently made this recovery process worse than it had to be.

So it sounds like it would not be unusual to be more tired through this coming December, which will be a year since I finished chemo. This is really important for me to know, because I fly around presenting at research conferences as part of my job, and these are scheduled months in advance. Maybe next fall isn't the best time to be flying around, since that process is difficult in the best of circumstances. I could put it off until spring.

Did your doctor talk with you about issues like this? Did any medical people? Nobody has really addressed it with me, and I have great difficulty figuring out what's reasonable to ask of myself and what's not. I work in an intense environment (the 60 hour workweek!), and I'm used to asking a lot of myself. I've begun to worry about what to do if I can't keep up this pace. Retirement age is only about 5 years away, and I have other medical problems as well (diabetes, hypothyroid disorder, chronic pain from my 1st cancer, HTN, etc.). For myself, I could be happy slowing down, without a doubt, but it's difficult to be looked upon as one "not producing" anymore, you know?

Anyway, thanks for sharing your experience!