Need help - recurrence after six months?
Hi everyone
My wife was diagnosed with Stage 1A IDC in September 2020. She had a single mx. Largest tumor was 2mm, 5 nodes checked, all negative. Er, Pr positive. Oncotype score of 11.
The other day she noticed a lump in the same breast (tissue area above the implants)with the mx—lump is about 2cm. Biopsy yesterday and prelim results is that it’s cancer.
Is it possible this was missed in the initial diagnosis?? Wouldn’t MRI have picked it up? I’m just at a loss of how it could have grown so fast.
Has anyone had a recurrence this quickly??
Comments
-
Dres123 I am writing to say I am sorry your wife is dealing with this again. This has to be frightening and disappointing to face just six months after surgery. We do know with mastectomy that cells can be left behind, there is simply no way to remove all the breast tissue. That being said, the size you mention does seem significant given her surgery was 6 months ago. Since this is so quick from original surgery and apparently so large I would think it was there before, but somehow missed. Has your wife been on any anti hormonal treatment such as Tamoxifen or an AI? Was her original cancer HER2 + ? Most breast cancers are relatively slow growing but there are a few that can grow quickly. Hopefully someone with this kind of experience can speak to what they went through. So glad your wife found the lump and getting it addressed. Sending you both my best as you struggle with this again.
0 -
Thanks for your reply her cancer was HER2-. Also the Ki-67 score was low as was her oncotype score.
0 -
Dear Dres, I am so sorry your wife and you are going through this. I have no answers to your questions personally, but I think needle (biopsy) seeding was mentioned by some ladies in these boards as a reason for early recurrence at least in some cases. Maybe you can search for that term? Whatever the cause, I hope your wife gets a treatment plan soon, so that she can get rid of this for good. My best wishes to you both.
0 -
No matter how clean the margins & clear nodes or how much the docs cut - there is always the possibility of those little microdots spinning off - even before the first surgery. That's why chemo or hormone treatments are often prescribed. Although I had a BMX, I had what was called a "local recurrence" within the first two years by my collar bone. Totally shocked all the docs because what was DCIS the first time not only came back, but re-occurred as IDC - and HER2+ on top of that.
Looking back I see your wife's first diagnosis was DCIS in your original posts, although you're saying IDC above. So did she have chemo or rads? And is she on hormone traetment? Maybe they didn't test for HER2+, and maybe not even any genomic tests? It will help others give useful answers if you go to My Profile and fill in the diagnosis & treatments done to date.
So yes - things are missed on scanning. And yes - it can be quicker than you would expect. Do you know yet if it is a recurrence of the original cancer or a new primary?
In your wife's shoes, I'd go see a different MO to get a second opinion - preferably at an NCI cancer center or a teaching hospital. https://www.cancer.gov/research/infrastructure/can...
We'll keep your wife in our thoughts.
0 -
Thanks for the response. To answer your questions, my wife’s pathology was Stge 1A IDC (0.2 cm) and was Er and PR positive, HER2 negative. The oncotype test came back low risk (11). No radiation or chemo. The only factor, we were given clearance to try for IVF for a second baby before starting tamoxifen. We tried, it didn’t work, and now this.
I’m hoping that it’s left over from what was before. I’m fearful that our ivf decision added fuel to the fire, but we had the tumor board give us consensus at a top 10 cancer hospital.
0 -
thank you! I was check the forum for needle seedinf
0 -
Hello, I have been through a similar situation. Your wife is might be having a "persistence" rather than a true recurrence - meaning that those cells were left behind somehow during her recent treatment. It could be needle or surgical seeding (I had that), or just that the doctors missed a spot.
However, whether you call it a persistence or a recurrence, the end result is the same: now the cancer has been hanging around for longer than it should have been, and that can be dangerous.
This is what I recommend: if possible, consult with an NCI designated cancer center if you haven't already done so. Better yet, transfer your wife's care to one. She will now likely need some combination of additional surgery, radiation, and a change in medications and hormone therapy. The next steps are critical, and you want a closely coordinated medical team who can salvage this for her.
It's good that her cancer has less aggressive features in general - she will hopefully still not need chemo, for example. It's hard that she'll have to go through more treatment than she otherwise would have, but the main thing is that the cancer is dealt with appropriately now. I hope that helps, best wishes to you both.
0 -
Thank you for this information. She already is at a NCI center, do you think I should transfer to a different one
0 -
If it were me, I'd probably seek an opinion at another NCI center, but I think you should ultimately go with whichever team you and your wife feel most comfortable with. There are so many factors at play. Don't be afraid to ask either team difficult questions you have - like what they think caused this to happen, for example. These things happen and it doesn't mean her original team did anything wrong, but you can often tell a lot about doctors by how they respond to difficult questions. Do they get defensive and shut you down? Do they dismiss your concerns? If so, it might be good to go elsewhere. I hope you get some answers soon.
0 -
thank you so much! I will ask them the hard questions. I'm mainly wondering why radiation was not done since she did have a positive DCIS margin.
I really appreciate your thoughts and advice
0 -
Dres123, don't take this the wrong way, but is there some reason your wife, the patient, can't be asking the questions of her physicians or deciding if she should transfer her care elsewhere? They aren't your decisions to make; they are hers, or yours together if she decides she wants your input.
0 -
I appreciate that. My wife doesn't use the boards and stays away from searching on the internet for these issues. We are a team and we work together to gather all the information possible. Of course, it's her decision, I am just gathering all the facts that I can for her
1 -
I will second what OP said...my wife is the same way. She hates forums, and really the internet in general. It can be uncomfortable for us (the husbands) to be asking these kinds of questions, because it can seem like we're trying to dictate or "mansplain"...but we're just trying to do our best to support our wives in every way they need though this. The only way we know how is through gathering information.
1 -
Good for you guys for being the information gatherers and helpers. We're all different in how we approach our disease & access info.
OP, it happens, t sucks that it happened to you. I'd ask for chest/abdo CT, repeat Oncotype & get a treatment plan. If it doesn't feel right, get a 2nd opinion but it sounds like you're in good hands at your center. I wouldn't think that just because this happened that you need to switch. Surgeons cannot remove every last cell and some tissue always remains behind.
best wishes!
0 -
Just my opinion from the other side of the coin: my significant other lets me take the lead on doctor and cancer related things. However, sometimes I wish he'd take on more of an active role because it would take some of the burden from my shoulders, and let me know that he'd be capable of watching out for me in the event that I couldn't speak for myself anymore. But the medical world is just not his forte, and he's very supportive in other ways that come more naturally to him. Anyway, I applaud you guys!
0 -
Glad to hear it's collaborative efforts! Buttonsmachine, I handed all the insurance and billing stuff to my husband and said, "Here ya go, be useful!" 😀 But I did like him in the doctors' appointments pre-surgery because he is a little better at remembering details, and since I got hit with a bonus cancer, my brain was turning to mush with all that was going on that year.
0 -
A second opinion is always useful. I not only ask what they recommend, but WHY they recommend each choice. Hearing the rationale is important in making the decision. Getting a second opinion does not mean you need to transfer care there; it just gives added information for you in making the ultimate decisions with the care team.
0 -
Hi all— so I have an update, a kind of confusing one if anyone has thoughts.
The good news—my wife’s PET scan was clear! I’m so thankful for that!
The confusing news—the breast MRI shows two spots in her left breast (with the mx). The first spot is 6mm and was biopsied, positive for cancer. The second spot is 5.5cm (!) and has not been biopsied. 5.5cm seems massive! Her last MRI was done six months ago prior to her mx and reconstruction. The large spot was not on the prior MRI. Is there any way that cancer can grow that fast in six months? Or is it plausible that the large spot is fat necrosis? Margins are irregular with enhancement, but she had her reconstruction just two months ago. Any thoughts? Thanks in advance0 -
I had a similar situation there too - I cannot say why it happens this way, but one of my recurrence masses measured 8cm or something. It's not that it was an 8cm massive tumor ball, but it was more that the cancer sent out tendrils that spanned 8cm. One doctor even said that it could have been that the cancer was dragged through my skin by a prior surgery, since this particular tendril followed the lines of a surgical incision. I actually had a couple recurrence masses that followed that kind of pattern of being a relatively small mass with these longer tendrils extending out that were hard to detect on imaging. But like I said, I don't really understand why or when cancer seems to do that, but I can say that a couple of my local recurrences seemed to follow that pattern.
0 -
PS I'm very glad to hear that your wife's PET scan is clear - that is truly excellent news. :-)
0 -
Thank you! I’m just baffled as to how it could go from not seen on an MRI six months ago prior to surgeryto 5cm in a matter of months. Her tumor profile was low (low Ki-67, oncotype of 11, ER/PR +, HER2-)
0 -
dres,
It’s upsetting but not baffling. There is a point where cancers are too small to be detected on imaging and then one day they grow and are visible. No one knows when that day will come. If it’s any comfort I had regular annual mammos. One year I waited 13 months between mammos and bingo! I was already stage IV after no indication of any problems 13 short months before. Though not typical, these things do happen. I spent very little time thinking about how this could havehappened and focused my energy on treatment since figuring out how it happened wasn’t going to change things and my energy was quite limited at that point. That was almost 10 years ago. Why am I still alive? No one knows that either. There are, despite all of the fluffy, pink propaganda, far too many unknowns about breast cancer and how we develop it and treat it. All the best to your wife.
0 -
thanks for your comments and I wish you all the best too!
Maybe I’m being difficult, but I just don’t see how a low grade tumor can go from nothing to 5cm in six months. I’m just hopeful for it being fat necrosis I suppose..0 -
Dres,
I had the same feelings after having a clear scan In August, to a liver full of tumours in December. One of them being 4 cm. Nothing truly makes sense in the world of breast cancer. Once the dust settles, try shifting the perspective a little. Nothing can change the why , or that it's there and it's happened. But you guys can certainly gather your info and opinions and see the best course on how to treat it this time around and get rid of it .. and hopefully for good.
Sorry you guys have to deal with this again. I'll say it.. breast cancer sucks. Especially at a younger age which I'm assuming your wife is based on trying the IVF. I was 30 at diagnosis and 33 now.
0 -
I wish you the best B-A-P! I will update when I find more information. Thanks
0 -
Dres123,
I agree with you that it is strange that it grew so fast, if that is even the case.
I do think it matters. Either it is a crazy fast growing tumor, which should be an emergency, or it was somehow missed, either by the equipment or the tech.
I'd want to know in either situation. If it were me, I'd get a second opinion at a top cancer center. I'm at a top NCI center, and I still went to MSK for a second opinion on chemo.
It is nice to see the husbands involved. Mine is very supportive, but leaves all the medical details and research to me. I wish he had a little more interest.
0 -
dres and all who have responded,
Unlikely, unexpected, and unexplained things can and do happen. They are not what might be considered the “norm" and the chance of those things happening might be small but they can happen to anyone. Not only did I have a 4 cm breast tumor 13 months after a clear mammogram, but I also had a 2 cm bone met. The kicker? Both breast and bone tumors were indolent grade 1 🤷🏻. Many of you may be aware of the fact that when you have a port installed there is a 1-2% chance of a lung puncture. An X-ray is taken after the procedure to make sure this hasn't happened. End of story, right? Not for me. On an unrelated PET about 2 weeks after my port was put in, it was discovered that I had a complete pneumothorax of my right lung. I had no pain nor any other symptoms. The doctors surmise that my lung was nicked during the port installation and deflated gradually like a slow leak on a tire. What were the chances of this happening? Less than 1%! My point is that regardless of how small the chances of something unexpected happening, it will happen to someone.
I understand how difficult this is to wrap your head around. I've been there with both my very unexpected stage IV dx and the collapsed lung (Imagine being told that you have a life threatening medical emergency yet you feel fine!), but things happen in life, both good* and bad, against all odds.
* My good? I have lived with stage IV for almost 10 years, despite my rocky start 😊.0 -
Just to update everyone here. The “new” tumor was actually a residual/persistence left over from the surgery. It has similar characteristics as the original diagnosis but with a significantly higher KI-67 (it went from 5% to 40%)
However, it is large, around 5cm. Luckily we have a clean PET scan and nodes look clear on imaging.
One question for the folks here—they are starting my wife in AI plus ovarian suppression before surgery. Has any one had hormone therapy for a large mass before surgery? Just curious. They took it to their tumor board so I feel confident but would love others thoughts.
Thanks!
0 -
this started to be more common as we have been having a pandemic - Hormone suppression- and they should be able see how well it slows things down after a few weeks - like Ki-67 should go down
0 -
I see--thanks for that context!
0
