Recurrence at core needle biopsy site

mellee

I totally get it. My husband got his ACL repaired at USC several years ago. His surgery was not great, and we believe it was performed by a resident, not the doctor we met with and expected to be doing the surgery. It's a definite risk of getting treated at teaching hospitals.

That said, if you're having to get biopsies in new places or experiencing swollen lymph nodes, that does not sound to me like something that would have been caused by biopsy seeding. When cancer is seeded by a biopsy needle, it's literally in the same spot you had the original biopsy. For me, I could see the lump right under my tiny needle scar. And it starts out really, really small -- just a few cells. So it takes time to grow to something you can see and feel, and even longer for it to spread elsewhere. That wouldn't happen in just a few months.

From your profile, your cancer looks very low risk, so hopefully these scares will turn out to be nothing! I hope you find a treatment team you trust. That makes all the difference!

blah333

I will say that my surgery results (mastectomy no recon) are better than 90%+ of pictures I've seen. The care is a mixed bag at LAC/USC and calling in or waiting for appointments can be annoying but overall it is high quality care, possibly moreso if I had to go around finding surgeons etc. All doctors have the possibility of being terrible. A least at an educational hospital people are usually overseeing the work being done. There is a general incompetence with the clinician notes in the system and doctors not listening but I don't really have anything else to compare it to. I hate having to work to keep doctors in check. All surgeries can have problems. It's difficult to know to blame the surgeon/inexperience or if that's just something that happens. Watching young doctors struggle to get my FNA lymph node sample did not inspire confidence, but I could see the node move on the screen, it wasn't such an easy thing to do. I just don't know what is what. Nothing is perfect though. Also I go to straight up LAC/USC (general hospital) for low income people, the care at Keck LAC/USC may be better but the same doctors serve both.

TwoHobbies

Mellee, my MO would like me to stay on for 10 years from the recurrence. But there could be better evidence that will come up in the mean time. A study indicated that seven years seems to be enough but that was not recurrence related and she considers me high risk. I was just glad to hear 10. For a couple of years I was afraid to ask her that she might say for life! As long as I have no trouble with the meds, I am happy continuing.

KBeee

10 years for me too.

mellee

Did your doctors base the 10 years on the the Breast Cancer Index test, or was it just an automatic recommendation because it was a recurrence?

KBeee

Mine was because my cancer "was not behaving".

mellee

I'm laughing at the idea of badly behaving cancer. It's staying out late, drinking too much...

Anonymous

now go to your room and stay there until I say you can come out.

mellee

lol

Manuella

mellee, too late to be of much help but I had the EXACT same thing happen to me. Needle track seeding is NOT as uncommon as they'll have you believe. I was originally diagnosed in Oct 2016. Had mastectomy/low oncotype (15), one very small micromet in one node so got ALND. I did 8 rounds of dose dense CMF (bc of age, mid 30s) and started on Tamoxifen. (I also have lymphedema, btw. I'll be having an LVA soon!).

Exactly a year post mastectomy (7 months post chemo and 4 months post start of Tamox) I found a small lump right under my biopsy scar. 0.5cm same pathology as original cancer, Oncotype did not accept slide bc sample was too small to study.

I go to MSK but got three different opinions. All MOs I saw said that tamox/chemo did not help much in my case bc of impaired blood flow due to mastectomy. All ROs I saw said I needed extensive rads inc underarm and clavicle. I was so angry (how could they let this happen!!!!) and scared bc of the LE (hello!, I had no nodes under my arms, what were they going to radiate there?). In the end I did it bc I wanted no regrets. My arm LE is the same (sub-clinical), but I now have very mild LE in the back near my armpit. Very manegeable. They kept me on Tamox and started me on ovarian suppression a couple of months ago. So far so good. I'm a year out from the recurrence and doing much better but get scared everytime I think I got exchange surgery while that cancer was still in there. Ughhh!Still, I feel better every day Hoping for the best of outcomes for all of us.

mellee

Hi Manuella,

Thanks so much for sharing your experience! I too am starting to think needle seeding isn't as rare as believed. I've already heard stories from quite a few women it happened to.

Interesting that impaired blood flow was mentioned. My oncologist mentioned that as a possibility as well, although now they are suggesting I switch to an aromatase inhibitor plus ovarian suppression. I would much prefer to stay on tamoxifen since I tolerated it well, but they're afraid it doesn't work well for me. What was your doctors' reasoning for keeping you on tamoxifen? And how are you doing on ovarian suppression? I'm really nervous about it!

I just had my first radiation session today. I am only getting chest wall irradiation. Hopefully that is enough for me! I'm so glad your more aggressive radiation didn't make your lymphedema too much worse. Best of luck with your LVA! I would love to hear how that goes for you. My physical therapist mentioned that as a possibility for me. There is a doctor at USC who specializes in it, but I haven't pursued it yet.

Manuella

They kept me on tamox for various reasons. 1) with impaired blood supply tamox/chemo couldn't really work at their full potential on the mastectomy breast, 2) I had only been on tamox for 4 months (I also skipped doses all the time 🤦♀️) when we found the recurrence so technically not enough time for it to have worked (specially w/ the blood supply issue), 3) They had been very aggressive bc of my age and done chemo even at stage 1A with low oncotype 4) my breast surgeon was almost certain it was what she called a “persistence" not a recurrence. They signed me up for this study MSK is doing on the genes of a tumor and my recurrence had identical genes to my initial cancer.

Even with all that I begged for lupron+AI. My oncologist said we shouldn't be reactive, that she believed I should stay on Tamox (which is systemic therapy and works all over the body to prevent mets) and do the most aggressive radiation bc the cancer had been in the dermis/deep dermis and that would be the most beneficial to prevent another local recurrence. I convinced her in Nov to let me start Lupron and so we started 3 months ago (a new study came out showing improved outcome with tamox+lupron. They used to believe lupron didn't help tamox but after this study they are recommending it). I worry all the time. I live in fear a lot and i hate it I will ask again about AIs at my next appts and see...

Manuella

I do very well on tamox. The only bad SE has been uterine polyps so they are watching me closely now on that front. Lupron SEs: terrible hot flashes and night sweats, acne (Its like I’m a teenager again!), and more anxiety. Meditation is helping with the night sweats (surprisingly! Pranayama breathing 15 mins before bed was recommended by my integrative medicine doc and it really works!). She says a lot of the SEs will get better with time so fingers crossed

mellee

The fear and uncertainty are the worst! It's much harder for me this time round.

Hopefully your side effects will get better, like your doc says. That was true for me when I started tamoxifen. I had really bad night sweats and some joint pain at first, but that all pretty much went away after 6-9 months or so. I did find these great moisture-wicking sheets that helped. They're called PeachSkinSheets: https://www.amazon.com/gp/product/B011IXSSLK/

And thanks for the meditation tip. I'll try it!

As for AI + ovarian suppression, when you talk to your oncologist, bring up the TEXT and SOFT trials. The data from those are what showed that tamoxifen + ovarian suppression is better than tamoxifen alone. But the big step up was the AI exemestane + ovarian suppression. It's recommended for premenopausal women at high risk of recurrence. If you're already doing the Lupron and suffering through those side effects, I don't understand why your doctor wouldn't put you on an AI. The major drawback is that there is an increased risk of osteoporosis, so they have to carefully monitor your bones. I'm getting a baseline bone density test. From there, they'll track it and put me on medication if it seems to be a problem. However, my MO did say that much of the bone issues are reversible once you stop.

With an AI, you also wouldn't have to worry about the uterine polyps any more. So it's definitely worth talking to your MO. Maybe she has good reasons for keeping you on tamoxifen, but if it was me, I'd want to know what they are. Telling me not to be "reactive" would not give me any peace of mind!

TwoHobbies

No BCI done for me. I have no desire to quit exemestane yet, so I have not asked for any testing like BCI. I will continue on and see what advice and research pops up over the next few years.

One interesting thing about ovarian suppression is it has been very hard to determine if I am in menopause. When they test me, my estrogen is low but my FSH has not risen, so I have been on OS for 5 years. That one I do look forward to getting off.

As for osteoporosis, exercise, exercise. That has helped me preserve bone mass.

mellee

It's fascinating how powerful exercise is as a treatment. My oncologist says it's just as important for reducing the risk of recurrence as hormonal therapy. Plus, it helps with your bones, fatigue, mental health. I guess I need to re-up my gym membership!

mellee

A question for you ladies: when you recurred, what tests did you get for restaging?

I only got a PET scan, but the physician reference UpToDate recommends a thorough restaging evaluation, including PET Scan, radionuclide bone scan (even in asymptomatic patients), and contrast-enhanced MRI for patients who have symptoms of a brachial plexopathy or arm edema.

TwoHobbies

I had a bone scan and CT scan of my torso and head. Never had the PET. If you had a PET and it was clear, it seems there would be no need to do the others? My understanding is the PET shows more on the cellular level if there could be cancer metastasis, and other scans would show the organs involved. But I am not a doctor so best to get the explanation from your onc on this one.

buttonsmachine

I have a few PETs per year, yearly chest wall MRIs with contrast, a mammogram for the remaining breast, and a baseline DEXA scan for bone density, but that's not really for detecting cancer... They also wanted to do CTs with contrast, but I'm allergic so we don't. Anyway, I'm at super high risk for distant recurrence so that might be why I get so much imaging. I don't know what is typical, or if there is anything "typical" for those of us in this weird situation.

buttonsmachine

Oh, as an aside, PETs do show your whole body, but no imaging is perfect, and sometimes MRIs will show things PETs don't. So yes, a combination approach to imaging is probably best.

Manuella

I got a pet and brain mri. They told me there is no re-staging for recurrences. However, if it were to be restaged it would be 3A (.5cm but it was in the dermis and deep dermis).

mellee

By restaging, I'm referring to what they do to rule out or diagnosis a progression to Stage 4.

It's interesting to me that so few people got radionuclide bone scans. It's recommended in UpToDate for everyone who recurs (I got the log-in from my cousin, who is an ER doc, and he gets CME credit for my research, lol). But my MO doesn't think it's necessary, although she will order it if I want it for peace of mind.

2002chickadee

I'm also a bit late to chime in, I'm another biopsy scar recurrence. Lots of the same stuff was said to me -- so rare! etc. Mine was discovered right after I finished chemo and before I started hormone therapy. I had it removed during my Phase 2 revision to my DIEP reconstruction, so basically a lumpectomy on top of my mastectomy. I had a meeting with my MO where we decided I'd go on Tamoxifen, and then I think less than two weeks later I was back in her office being advised to go on Lupron/AI. I had not received radiation previously, I did receive I guess an aggressive radiation plan, I actually didn't realize it was an option to have a less aggressive approach. The recurrence was terrifying to me and I just nodded and went with whatever the doctors said! I had a PET scan on my oldest son's sixth birthday, waiting to find out if it had spread while buying him cupcakes was awful enough to be willing to commit to the more aggressive path. I did have a brain MRI a few months later due to symptoms (nausea, headaches). Both tests showed nothing.

I was not restaged, pathologically similar to original cancer, confined to dermis but also a few micro bits outside of the main tumor, so radiation seemed very advisable. I finished radiation in mid-Dec, and I still am having a lot of pain and weakness in my rotator cuff, underarm, etc. so despite it seeming pretty easy during treatment, it's obviously not without SE's.

Lupron was a bit rough at first, I've just had my sixth monthly injection and SE's are manageable. I started an AI in December as we were hoping to get Lupron SE's under control first. I am definitely aware that I'm on these medications but they are overall manageable. There are several good threads on AIs that you might want to check out.

I love the "badly behaving cancer" image -- mine seems like a lazy kid that everyone thinks is an underachiever who keeps surprising us with his diligence and persistence.

mellee

Haha! My cancer is the same. Everyone said he was a total slacker, but he still managed to sneak out to my lymph nodes, then come back after we thought we'd kicked him out for good.

I'm glad you're adjusting to the Lupron. I have my first shot in a couple of weeks. What were the main side effects you noticed?

I don't know if you want to add any medications to the mix (and I wouldn't blame you if you don't!), but you might want to ask your RO about pentoxifylline + oral vitamin E. There is a lot of research on it preventing radiation-induced fibrosis.

Another thing you might consider is Juven. It's a nutritional supplement used for wound healing and recovery after surgery and for radiation injury. Our bodies have gone through a lot and need some support! Juven includes amino acids that are depleted after radiation, as well as other amino acids and antioxidants that can theoretically help combat the side effects of radiation on healthy tissue. Unfortunately, it's expensive and usually not covered by insurance unless you have a chronic, non-healing wound. But you can buy it on Amazon if you want to try it for a few weeks. It's made a difference for me.

https://juven.com/why-juven

2002chickadee

Hi Mellee,

Can you tell me more about what kind of difference Juven made for you? I'm in the middle of locating a new PT provider (insurance snafu with the MSK location where I started), so not doing much other than stretching currently but the MSK PT's didn't seem to have a great handle on my issues after 6 visits, and I'd love a day without pain in that region.

I've seen the studies about preventing fibrosis, but I'm not sure if I have fibrosis or just inflammation or what. The PT told me that "shoulder dysfunction" after breast cancer is very common.

Lupron gave me an estrogen surge and jump started my period post-chemo after the first injection, then when estrogen crashed after the next injection so many aches and pains, felt like an 80 year old getting out of bed every day, and my emotional swings were huge. Really important to get up and move around regularly. I had hot flashes and night sweats, 4-5 sessions of accupuncture did those in. Still have some mood swings (waaaay more under control though), vaginal dryness, and low interest in sex. All the other SE's are really fine by now, except weird joint pain in my big toe sometimes.

mellee

Juven helped with fatigue and I believe it helped me bounce back from my treatments quicker. It also helped me heal after my mastectomy when one of my incisions kept opening up. Interestingly, the company that makes Juven used to make an identical product that was marketed to fitness people, because it supports building lean muscle and prevents tissue breakdown. It also offers general immune system support (via arginine and glutamine). Unfortunately, it was just discontinued which is a shame because it was a fraction of Juven's price.

mellee

Ahhh, the dreaded shoulder issues! A big thing that helps is to use your arm as much as possible, rather than babying it. I think that's half the battle in keeping your full range of motion.

For the fibrosis issue, you don't want to wait until you have it because as far as I know there is no way to reverse it. Fibrosis starts with inflammation and progresses from there. Fibrosis can manifest years after radiation treatment because the damage triggered by radiation continues indefinitely. For me, I'm very worried about fibrosis for cosmetic reasons, as well as for how it might make my lymphedema and range of motion worse. A lot of women who have radiation have no problems, but I want to make sure I'm one of them!

Anonymous

Hi Mellee

Re post recurrence checks for restaging, my surgeon ordered a bone scan and contrast ct both times.

mellee

Good to know, Astrid. Thanks!