Recurrence at core needle biopsy site

mellee

I haven't had my actual consult yet with the MO, just the rec from the tumor board, so I don't know specifics about types of chemo. I'll update once I have more information.

Thanks everyone for weighing in with your experiences with ovarian suppression. I've been super worried about it, so it's a relief to know that it isn't always terrible! Kind of reminds me how worried I was about tamoxifen, but then I ended up doing pretty well on it after an initial adjustment period.

Anonymous

Hi Melle

Just reading through this thread.

Firstly I am really sorry you are dealing with this recurrence. It seems to have unfolded into a not so simple dx.

I was really puzzled reading your original dx that with a 2 cm tumour and 2 positive nodes you had not even radiation on that side. Usually with a dble mx you can have chemo without rads..but you had neither. How is that considered low risk? I find it puzzling. But then, I guess there is a lot of new info since my original dx.

I wish you smooth sailing with the treatment plan and hopefully this will soon be the end of your cancer journey.

KBeee

There are also advanced test they can do such as Foundation One (many other name brands too) which look at about 700 genetic traits of the tumor and can specifically tell which meds will and will not work. It is expensive, but insurance is sometimes covering it in cases of recurrent cancer. Ask about that. You want to be sure this is appropriately targeted with something that will work.

Sara536

An interesting study re: seeding-

2010 RESEARCH NEWS

Current | 2018 | 2017 | 2016 | 2015 | 2014 | 2013 | 2012 | 2011 | 2010 | 2009 | Perspectives

Self-Seeding of Cancer Cells May Play a Critical Role in Tumor Progression

Cancer progression is commonly thought of as a process involving the growth of a primary tumor followed by metastasis, in which cancer cells leave the primary tumor and spread to distant organs. A new study by researchers at Memorial Sloan-Kettering Cancer Center shows that circulating tumor cells - cancer cells that break away from a primary tumor and travel to other areas of the body - can also return to and grow in their tumor of origin, a newly discovered process called "self-seeding."

The findings of this study, which was led by Joan Massagué, M.D., and Larry Norton, M.D., suggest that self-seeding can enhance tumor growth through the release of signals that promote angiogenesis, invasion, and metastasis. The investigators published their work in the journal Cell.

According to the results of this research, which was conducted in mice, self-seeding involves two distinct functions: the ability of a tumor to attract its own circulating progeny and the ability of circulating tumor cells to re-infiltrate the tumor in response to this attraction. The investigators identified four genes that are responsible for executing these functions: IL-6 and IL-8, which attract the most aggressive segment of the circulating tumor cells population, and FSCN1 and MMP1, which mediate the infiltration of circulating tumor cells into a tumor.

The findings also show that circulating breast cancer cells that are capable of self-seeding a breast tumor have a similar gene expression pattern to breast cancer cells that are capable of spreading to the lungs, bones, and brain, and therefore have an increased potential to metastasize to these organs. Additional experiments revealed that self-seeding can occur in cancer cells of various tumor types in addition to breast cancer, including colon cancer and melanoma.

The concept of self-seeding sheds light on clinical observations such as the relationship between the tumor size, prognosis, and local relapse following seemingly complete removal of a primary breast tumor. "We know there is an association between large tumor size and poor prognosis. This was always thought to reflect the ability of larger cancers to release more cells with metastatic potential. But this association may actually be caused by the ability of aggressive cancer cells to self-seed, promoting both local tumor growth and distant metastases by similar mechanisms," said Dr. Norton.

This work, which was funded in part by the National Cancer Institute, is detailed in a paper titled, "Tumor Self-Seeding by Circulating Cancer Cells." An abstract of this paper is available at the journal's Web site.
View abstract

mellee

Thanks for the recommendation, KBeee!

Astrid, I didn't have chemo after my original Dx because the Mammaprint said I was low risk for metastasis and my type of cancer would receive a very low benefit from chemo. As for radiation, I was in a grey area. Until a few years prior to my Dx, women weren't considered for radiation after mastectomy unless they had 4 or more positive nodes. Things changed in 2014 when the Early Breast Cancer Trialists' Collaborative Group (EBCTCG) published their meta-analysis which found that radiation in women with 1-3 positive nodes reduces the risk not only of local recurrence, but mortality from distant recurrence. This was a game changer as until that time it was believed that radiation only prevented local recurrence but had no effect on overall survival.

However, even after the EBCTCG findings, things were still in a grey area for some subsets of women with 1-3 positive nodes. Literally weeks before my diagnosis, the American Society of Clinical Oncology, American Society for Radiation Oncology, and Society of Surgical Oncology issued their guidelines for post-mastectomy radiation (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC51795...). They stated that some subsets of node-positive patients are likely to have such a low risk of local recurrence that the absolute benefit of radiation is outweighed by its potential toxicities.

I was in one of the subsets where the decision required clinical judgement and a very careful weighing of the benefits and risk. Although my age put me on the borderline of the higher risk category (I had just turned 40), everything else was lower risk: T1 tumor size, absence of lymphovascular invasion, presence of only a single positive node (I technically had 2 nodes positive, but the 2nd was a micrometastasis), low tumor grade, and strong hormonal sensitivity. Plus, I had already had ALND (if I hadn't, radiation would have been a given) and everything was all clear. A tumor board recommended against radiation, one RO recommended radiation based solely on my age, and another RO confirmed I was in a grey area but asked me to consider it. It was a tough call, but in the end I decided against it.

april1964

this is so confusing because all of my doctors insisted that I needed radiation even though I was node negative

mellee

April, did you have a mastectomy? If you had a lumpectomy, then radiation is recommended even if you're node negative.

Anonymous

Hi again Mellee,

Thankyou for your wonderfully detailed answer. I really appreciate it. I had the similar node dx as you..1 node with extra capsular spill. Similar age in that I was 42.

I'm not sure if oncotyping was around in 2002 but I have never been offered it even in 2012. Also never heard of mammaprint? And the new test KBee mentioned...sounds incredible! I wonder how they can be sure this is serding when the pathology has changed?

april1964

mellee, I did have a lumpectomy... I didn’t want to do radiation but the doctors pushed it

mellee

Astrid, Oncotyping wasn't available (outside of testing) until late 2011. And doctors still don't always offer these tests. I had to ask for it. Mammaprint is basically an alternative to Oncotype. My MO likes it better: https://www.agendia.com/our-tests/mammaprint/

As for the seeding, they aren't 100% sure. They definitely thought it was originally, because the lump was literally right below the skin at the original biopsy site. You could feel it right below the biopsy scar.

Since the pathology has changed, that does raise questions, however it doesn't rule out seeding. Research shows that intratumor heterogeneity is not uncommon. So it's possible that there were a few cells seeded from the original biopsy that weren't responsive to tamoxifen, and so they've grown. But it's impossible to know for sure.

April, that makes sense. I chose a mastectomy in the first place because I didn't want to do radiation. I knew with lumpectomy it was guaranteed.

Anonymous

yes, I was wondering if these were the cells that did not repond to tamo. Thanks Mellee. I am learning a lot.

Palesa2018

Sara536- very interesting and somewhat scary article. Thank you for sharing.

Mellee - thank you for your generous responses and sharing your experience. Very helpful. I'm always thinking about my treatments and wondering if enough was done.

carmstr835

When I as originally diagnosed through a radiologist with biRad score of 5, I wanted an excisional biopsy. I researched and copied all the clinical studies that proved needle core biopsies seed cancer.. Every surgeon I contacted refused to deal with me unless I agreed to a biopsy first. They refused to do an excisional biopsy. At that time, my cancer was limited to just my breasts, no involvement in the lymphnodes according to ultra sound. My tumors had grown a few millimeters in just a few days, so I as scared and felt I had no choice but to succumb to the procedure. 9 days after I agreed to the needle core biopsies, the cancer spread to my lymphnodes grew to 2.6 cm and burst. Prior to this biopsy, I doubt I needed radiation. I was planning mastectomies to forgo the radiation and was planning immediate reconstruction. With the new development of this fast growiing cancer the immediate reconstruction was off the table and radiation was on. Also 6 cycles of chemo as well as heceptin and perjeta for a full year. All the surgeons laughed when I was concerned about seeding the cancer. Well, mine did. I am angry about this but nothing I can do. I believe it is an insurance thing. Why do surgery when there is a slight chance it might not be needed. They do radiation and chemo to deal the seeding.... It doesn't always work.

mellee

Good news! After re-running the pathology, this looks like the same cancer after all. The previous lab apparently screwed up the sample. I'm 100% ER+, 90+ PR+, Her2-, Low Ki-67. I have my first consult this Thursday so we'll see what the oncologist says, but I think this will change things.

Anonymous

relatively good news mellee.

good luck with appt.

do keep us posted.

Palesa2018

All the best Mellee!

KBeee

That is good news! Hoping you can just get a different hormonal therapy. Keep us posted on Thursday. Hoping your appointment goes well.

mellee

Update: I saw a new MO who I really like. She said chemo is not on the table. She believes this is residual disease from the biopsy. So that's the good news. She is taking my case up with her tumor board and they'll talk about radiation and ovarian suppression. Ovarian suppression (plus Aromasin instead of tamoxifen) is under consideration because the tumor grew even though I was on tamoxifen. Apparently there is a case to be made that since the blood flow to my breast was compromised because of surgery, that may have prevented the tamoxifen from adequately penetrating the area. So tamoxifen isn't definitely out. But it's something I need to think about. I'll be getting a second opinion from an MO at UC Irvine on Friday, so we'll see what she says.

I also saw a radiation oncologist today at Cedars. He is being very aggressive. They don't have data to guide them on how to treat needle seeding or even residual disease differently. And he also is concerned that my cancer grew from whatever small number of cells were left from the biopsy to 1.7 cm in just over a year while I was on tamoxifen. That is a red flag to him. He said if my recurrence from the needle biopsy had come back in 5 years, maybe radiation could be under discussion. But it's behaving relatively aggressively, despite my low-risk pathology (probably because of my young age). So he's treating my case pretty much the same as they'd treat your garden variety local recurrence (LR). Apparently, once you get a LR, your risk for metastasis goes way up. So they treat this as the last chance to cure the cancer and come at it guns blazing. He is recommending chest wall radiation, plus radiation to the axilla and the supraclavicular nodes.

Because he wants to radiate the axilla, they can't do 3-week hypofractionated radiation, so I would be doing the old 6-week regimen. The risk of my lymphedema getting worse is 30-40%. Risk of becoming hypothyroid is around 25% (although 10% of women develop hypothyroidism anyways, so it's hard to say how much radiation increases risk). I might get pneumonia due to lung damage. And I'll have to be monitored for the rest of my life for secondary cancer caused by the radiation (biggest risk is sarcoma). So I'm not happy. But he believes my risk of recurrence is 40-50% if I do nothing. I don't personally believe my risk is that high due to my unusual circumstances, but there are no studies of cases like mine, so it would be irresponsible to make treatment decisions based on theory.

I'm getting a second opinion in a few weeks from an RO my new MO said she would send her family member to in my case. I'm sure he'll recommend radiation, but I'd like to get his take on the necessity of radiating the axilla, given that I had an axillary dissection back when I did my BMX. We shall see!

I'm learning a lot about radiation and local recurrences, and I'll be doing more research in the meantime. Hope this info is helpful!

Anonymous

whoah mellee!

geez. there is a lot of very interesting info there, that I never heard before.

thanks for sharing. You are super articulate with your medical knowledge and communicating it to us.

thankyou.

and also...

shite! not wonderful news for you at all.

So glad you will get another opinion on this.

buttonsmachine

mellee, thanks for updating us. That is a lot to take in and consider. Your situation reminds me somewhat of my situation after my "local recurrence" (which one doctor called a "persistence" rather than a true recurrence... but anyway). The point is, I had many doctors telling me totally different things. No one knew what to do with me, because my situation was totally unique. There was no road map, and I was in uncharted territory.

In all the uncertainty though, I did find doctors who seemed to be able to make sense of what happened, and so they had a better idea of how best to proceed. Anyway, I hope you find someone who has clarity on the situation, and who can make sense of the best way to help you.

mellee

Hi everyone. Just thought I'd update you all. Since my last post, I got a 2nd opinion from both an RO and another MO.

The second RO I saw had a very different take than the first. He does not think it's necessary to radiate my axilla or supraclavicular nodes. Nor does he view my risk of metastasis in the same way as the first RO at Cedars. I hope he's right, because I've decided to go with him and start radiation next week. He's Harvard trained and affiliated with City of Hope, plus he's been practicing for 40 years, so I'm trusting his judgment. He took the time to really look at my case in all its idiosyncrasies and even requested my slides. I don't doubt that the Cedars RO is a good doctor. But he was clearly lumping me in with all women who experience recurrences despite my unusual situation. He wants to play it safe, and I understand that. But I'm the one who has to live with the consequences of that. I weighed the 30-40% chance of my lymphedema worsening against what the 2nd RO views as a very, very small statistical survival benefit to radiating my axilla and nodes. I decided it's not worth it.

I also had a great consult with Rita Mehta, an MO at UC Irvine. If she was a little closer, I'd choose her as my doc. She's an incredible researcher and source of knowledge. She recommended I go on ovarian suppression plus Aromasin. I'll have to take medication for my bones. If I can't tolerate the ovarian suppression, I can go back to tamoxifen. But she definitely thinks it's a good idea for me to be more aggressive with my hormonal treatment.

One thing I've learned in recent weeks, particularly after meeting with Mehta and discussing the research (or lack thereof), is that there are no clear cut answers for recurrences. This is from UpToDate (the evidence-based, clinical decision support resource for physicians):

"A locoregional recurrence after mastectomy represents a difficult clinical problem, and there is little consensus on how best to manage these patients. Major issues include the lack of randomized trials to guide treatment and the marked evolution in the management of earlier­ stage disease over the last decade that has implications for evaluation and management of locoregional recurrence."

For those of us who had needle biopsy seeding, this goes double. There is no data to guide physicians on our situation, so they must make informed guesses. The uncertainty is stressful, but it helps to have a treatment team you trust, and I feel like I'm getting there.

TwoHobbies

Mellee, I am seeing your post way late, but just wanted to chime in that I have been in almost the exact same boat. Two years after mastectomy and low risk HR+tumor, I had a 5mm lump in the dermis. I had lumpectomy, rads, chemo, ovarian suppression and switched from tamoxifen to AI. You nailed it when you mentioned the uncertainty and lack of data on recurrences. If I had $100 every time someone said I was such an unusual case, I could have paid my medical bills! So all we can do is listen to various opinions and go with your instincts.

For me, this was six years ago and knock on wood, I am fine. (Hate to say it out loud). I had a lumpectomy and then here's what I did beyond and the discussion at that time:

I had no doubts I wanted to get off tamoxifen since it didn't work for me. I went with ovarian suppression and am still on it because they don't see signs of menopause in my bloodwork. I have gone through all three AIs, just to try to improve side effects, and am happy being on exemestane now. MO says right now she would like me to stay on 10 years.

Chemo: it was unclear whether chemo was necessary but my doctors recommended it. A study had just come out that it was definitely showed improved outcomes in triple negative local recurrence, ER+ didn't show a lot of difference during the study time period. They weren't sure if an extended study period would show advantage. Not sure is there is more data 5 years later. Sounds like they did not recommend chemo for you, which may mean there is more data that there is not much advantage beyond hormone therapy. I did have some lymphovascular invasion, both times, so that could also make a difference.

RADs: My university center had recommended the full breast rads and with the extended field as you mentioned your first opinion recommended. I went to another center and that RO wasn't sure I needed rads at all I met the two in the middle and decided to go with full breast rads but not beyond. They had actually taken out a sentinel node near my collarbone and it was negative, so I hoped I was right that I didn't need that.

I hope all goes well.

mellee

Thanks for sharing your experience, TwoHobbies! It's so reassuring to hear from other women who have gone through this.

Your radiation experience is really interesting. It makes me feel better about my treatment plan, for sure!

From what I understood with chemo, if my pathology had been different, they would have considered chemo. But considering my grade and hormone status, they did not believe I would benefit.

With the AIs, are you being advised to stay on them for 10 years from your original breast cancer or the recurrence? I'm assuming the clock starts over, but I haven't asked my MO yet.

Anonymous

so glad you got those 2nd opinions Mellee.

sounds like a good plan.

best wishes for the rads.

mellee

Thanks, Astrid. I'm going to slather on calendula cream and hope for the best!

Anonymous

oh good! May I suggest fresh aloe vera to? Keep some stems in the fridge then take them to put on straight after the blast. My treatment hospital grew them in the courtyard garden for us to use if we wanted. I found it so cool and soothing. Straight from the plant is best.

mellee

Thanks for the suggestion! I'll see if I can get my hands on some.

blah333

Do you go to an educational hospital?/did they do your original biopsy?

mellee

My original biopsy was done by an experienced doctor at a well-regarded breast center here in Los Angeles. I don't believe the seeding in my case was due to clinical error. If you read the research on seeding, it is universally acknowledged that biopsy has the potential to seed individual cancer cells. The body probably kills them off some of the time. But in most cases, they will be killed off by radiation and other adjuvant treatment. However, I suspect that as less women are overtreated with radiation, we may see more cases of needle seeding. The recommendation is that the entire needle tract including the skin at the entry point be excised at the time of surgery. This is not standard of care because it would leave an additional scar and frankly, doctors just aren't worried about the possibility, but it would prevent these rare recurrences.

blah333

OK. Just curious. I am low income and go to LAC/USC Medical center and deal with mostly inexperienced doctors. Although I felt the person who did my initial biopsy core was great and competent young doctor, I now have less and less trust for the doctors I've had to deal with because I have had to have biopsies recently and the possibility of having cancer again so soon from DCIS is alarming/making me question what they left behind. Or perhaps I have swollen nodes due to crude surgeon inabilities. One side of my chest was done by an expert and the other a "breast fellow." They try to deny it but I can tell, the different handwriting etc. My most recent FNA biopsy was done by some slow, unsteady newbies and was a giant headache. I have no reason to suspect seeding but the possibility of having a recurrance this soon is making my mind wander.