Difference between recurrence and new primary cancer
How do they tell the difference between a new primary cancer and a recurrence of the old cancer. I had ILC in 2017, treated with lumpectomy and radiation. I stupidly refused antiestrogens because I thought I would be OK. They have now found another tumour in the other breast, but say it's ductal this time. Has anyone else had this happen to them? Have appointment with surgeon tomorrow, have to admit I'm way more scared this time around.
I'm sorry you are back. It's not fun, is it?
It appears that you have a new primary. Breast cancer doesn't jump from one breast to the other. So with your new cancer being in the other breast, it is almost certainly a new primary. Even if it was in the same breast, if one cancer was ILC and the other IDC, that would be another way to distinguish between a recurrence (which would be ILC) versus a new primary.
Once any of us have been diagnosed one time, we are all higher risk than the average woman to be diagnosed a second time, with a new primary. That's a little secret that too many oncologists don't tell their patients. The further out someone is from diagnosis, the greater the risk, simply because we're older - all women become higher risk as they get older (the greatest risk years for breast cancer are our 60s and 70s) and it's the same for us. A new primary might be in the same breast or the opposite/contralateral breast and it might be a cancer that is similar to the first cancer or it might be completely different.
This board is full of people who've returned with a second primary. For many of us, it's 10 years or more; sometimes even 20 years. My second primary hit when I was 61 - I was just into those highest risk years. Like your situation, mine was also in the contralateral breast. While both my diagnoses were IDC, the presentation was very different, with just a microinvasion and DCIS scattered throughout my breast the first time, and a small solid mass with no DCIS the second time.
Good luck tomorrow! I hope it goes well.0
I have just been diagnosed for the second time in my life too! 18 yrs on. My second cancer came back on my original mastectomy. I spotted a small spot on my chest sticking out, in the mirror. I just had a prophylactic mastectomy, to try and avoid another cancer in the future...or at least make it more identifiable. It is scary, even second time round. Especially when you read here other people’s diagnoses. Best of luck for tomorrow.0
I have just been diagnosed for the second time in my life too! 18 yrs on. My second cancer came back on my original mastectomy. I spotted a small spot on my chest sticking out, in the mirror. I just had a prophylactic mastectomy, to try and avoid another cancer in the future...or at least make it more identifiable. It is scary, even second time round. Especially when you read here other people's diagnoses. Best of luck for tomorrow.0
Thanks so much for the info Beesie. What you said makes a lot of sense, and also makes me feel more hope about tomorrow. But I also think I was almost in denial about my first cancer. I just wanted to have my life back. This one is hitting me harder and I think I'm realizing that cancer will likely be part of my life forever. Just need to find a way to accept that and not dwell in it. Hope you are doing OK.0
I get what you are saying, some of the stories on here scare me. But there are lots of inspirational ones too. But I totally get the importance of venting and having a place to talk about your worst fears and meltdowns, Lord knows I struggle with that too. Interesting choice to have a mastectomy so any future cancer would be more visible. If I am reading your post correctly you had a second prophylactic mastectomy after the first mastectomy? Is a prophylactic mastectomy different? I'm asking because I'm thinking along the same lines, I don't want this to keep happening - not sure I have a whole lot of control over it though.0
RedMoon, when I was 42, I was dx with an invasive ductal carcinoma, in my left breast. My surgeon easily talked me into a mastectomy. Nearly 18 yrs later, a small lump, about the size of a pinhead, caught my eye in the mirror. On my mastectomy chest, just above where the scar would have been. (That disappears over time). So after seeing a doctor and having an ultrasound on it, plus biopsy, the elderly radiographer (about my age, hahaaa) came in to chat to me about it. He said he’d seen so many women come back with a second and third breast cancer, and thought I should consider a prophylactic mastectomy, to help reduce the amount of breast tissue that a new cancer can form in. He also stated it was rare for a new lump to form on a mastectomy. When I met the surgeon, he reinforced the same idea. So, I had a mastectomy on the right hand side, and a lumpectomy into the old mastectomy on the left hand side. Excepting for the seroma that has formed under the lumpectomy, the lumpectomy was pretty simple surgery. The advantage of having a totally flat chest now, is when a lump forms, it is easy to see. They will keep doing ultrasounds every year, but no more mammograms. The small lump grew into a 6mm lump. When I went to have the surgery, the surgeon drew a small circle around it. It was that easy to see, sticking out. Like a tiny baked bean laying flat on top of my chest (under the skin, of course).
Oops, back to your question, is a prophylactic surgery different? Yes, because they don’t take your lymph nodes from under your arm, so no cutting of nerves under there. No problems with lifting your arm (except for the stitches). Still had those horrid drains, but three weeks after surgery, and drains are gone, I’m feeling pretty good! Big positive with a flat chest, is there would be no way you could miss seeing a 2cm tumour forming under your skin. Hope this helps with your decision making, RedMoon!0
moth Member Posts: 3,293
Always important to remember the counterintuitive fact that mastectomy does not prevent metastatic recurrence and does not improve survival.
In fact survival is better in lumpectomy pts when compared with same "type"
moth, that's true, but a MX does significantly reduce the risk of a new primary, which is what RedMoon is facing with her new diagnosis.
Of course a MX unfortunately doesn't eliminate the new primary risk completely. But from reading this site (not representative, I know), it seems that a lot of us who develop a second primary go on to develop a subsequent recurrence or another new primary - and it's interesting that the radiologist who NoBananas spoke to said the same thing. So significantly reducing this risk is an important consideration, particularly since you never know how aggressive a new diagnosis might be.0
Really interesting discussion. Thank-you all for your input. I really appreciated your comments Beesie about my original question. Felt so much better after reading that - and the surgeon confirmed everything you said.
I saw surgeon today. Apparently I have two other tiny lumps that they didn't biopsy (because they weren't suspicious enough) and he wants to consult the oncologist before surgery. They may want to biopsy them before proceeding. So I may not have the option of lumpectomy even if I wanted it. We talked about mastectomies, and he suggested a mastectomy with immediate reconstruction (mainly because the wait times for delayed reconstruction here are upwards of two years). Not sure I want immediate reconstruction? It sounds like they take other parts of you (from your back or stomach) and move it over to the breast. Sounds like a much more involved surgery - plus I've heard it's harder to see new cancers if you have reconstruction? I'm 62 and I don't need boobs.0
RedMoon, I just turned 60, and thought the same as you, I don’t need boobs. It’s eliminated the paranoia of checking my breast all the time for a new lump, and hoping I hadn’t missed anything. The problem with BC, is you don’t have a lot of time to make these decisions before surgery. I am sure you will choose something you will be happy with.0
Does anyone have information/studies about developing new cancers after an initial diagnosis, in women who had BMX as opposed to an MX initially? When I was diagnosed in July with a new primary (original DCIS in 2008) my knee-jerk reaction was to have a BMX. My doctors talked me out of it saying with the MX of the 2-time breast, my odds of a third primary (or a first primary in the other breast) were no different from any other woman. Do the studies really support that idea?
Thank you in advance for your information!0
moth Member Posts: 3,293
Elle2, have a read through this thread. Beesie has compiled many studies which look at surgical outcomes
Elle, diagnoses of 3rd primaries are so rare that I doubt that there are any studies. I've looked for them but have never found them.
The reason 3rd primaries are so rare is not because they don't happen - you'll find quite a few people on this site - but because the group of patients who could possibly develop a 3rd primary is very small. Approx. 12.5% of women develop breast cancer a first time; the percent who develop BC two times is a just a small percent of the original 12.5%. Looking at those of us who do develop BC twice, many opt for a BMX at the time of the second diagnosis. While this doesn't eliminate the risk of a 3rd primary, it reduces the risk to something in the range of 1%-2%. So within this already small group, the number who continue to have one or two natural breasts after the second diagnosis is small - and these are the women a researcher would want to look at to determine the risk of a 3rd primary. Therefore developing a research study to follow these women, to see if they are diagnosed a 3rd time, would be difficult and costly, since these patients are hard to find and there would never be a critical mass of patients in any one location.
Having said that, while I've never found data on 3rd diagnoses, I suspect that your doctor is wrong when he said that your risk is no different than any other woman. It is well established that once we've been diagnosed one time, our risk to be diagnosed a second time is higher than the risk of any other woman. There's no one reason why this is true; to the best of my understanding, it's more of a generalized risk based on the fact that if your cells went wonky one time, they probably are more likely (than the average woman) to go wonky again. And if your breast tissue has shown itself to be a friendly environment for the development of cancer cells one time, then it's more likely to do that again. In other words, for each of us, whatever the reason we developed breast cancer the first time, well, that reason might still be there and might cause breast cancer to develop again.
When it comes to a 3rd diagnosis, the factors that made us higher risk for a second diagnosis still remain. And in fact having a second diagnosis probably confirms that those factors are still relevant and remain at play in our bodies. So my gut reaction when I got my second diagnosis was that this probably meant that I was very high risk for a 3rd diagnosis.
I'm a stats person and I really wish that there were stats on this - I'd be thrilled to be proven wrong. I don't generally put much weight on anecdotes, but with nothing else to go on, I will say that in 15 years on this site I have been surprised by the number of people I've seen return with 3rd diagnoses, particularly relative to the number I've seen return with 2 diagnoses.
This is not what you want to hear, and I stress that it's just my guess and my opinion, however there are some facts and logic behind my thinking.0
Bessie - thank you for responding. You’re right, it isn’t what I wanted to hear. Many times I have watched actual situations that confirm my hypothesis far more effectively than statistics would indicate. So I’m attuned to my gut suspicions as you are. However, I’m the kind of person that wants to hear the odds, the truth, the possibilities and then I’ll prove them wrong if I can.
I originally pressed for a BMX at the second diagnosis. It was my knee-jerk reaction after getting through 13 years without much concern. How the eff can this come back after 13 years? I was blind-sided that it didn’t, a new cancer instead decided to join me. It was the same for you, so I think you can understand my thinking. Effectively, I can just throw all those odds and tests in the trash because it’s not a recurrence, it’s a new cancer. For me it begs the question if BMX or MX, am I in the same position anyway for a future cancer? Especially with an Oncotype of 44? Is that related to my IDC or a new cancer?
Another question that nags at me, especially when those of us have new primaries, is why they are typically more agressive? Have they mutated due to prior treatments? If so, how? It simply makes more sense to me that new DXs or recurrences should be decreasing in potency, not the other way around.
Anyway, thank you for your input. I spend a day or two engrossed in research and then have to walk away for a while because the illogical sense of BC just pisses me off. Not to mention the fact that we have been throwing millions and millions of dollars at BC research year after year after year and the only thing the doctors can confirm as a possible connection to a diagnosis is having breasts0
Elle, I'm not sure I'm clear about what you mean, but your Oncotype score would be specific to this cancer and would have nothing to do with your risk for any future cancer. The Oncotype test evaluates the genetic make up of the cancer cells from your current tumor to assess the aggressiveness of this diagnosis.
If you were to be diagnosed again, it would be a different cancer and might have completely different characteristics, just as your current cancer is very different from your previous diagnosis. I don't believe it's true that new primaries are typically more aggressive. That is the case for both you and me, but I've seen lots of situations on this site where a second diagnosis has been less aggressive than the first diagnosis. So again, no stats on this, but lots of examples from my 15 years reading here. I've seen cases where the first diagnosis was an aggressive invasive cancer and the second diagnosis was DCIS. Anything can happen for those of us who are diagnosed a second time (or a third time, although hopefully that doesn't happen).0
Peaceful02 Member Posts: 3
I haven't been on this site for almost three years. First diagnosed at age 68 with right breast - 2 mm DCIS Stage 0 - lumpectomy - oncologist decided no radiation (there wasn't enough tumor left after lumpectomy to use to get an Oncotype score). Took Tamoxifen 20 mg for first 9 months, had terrible side effects so oncologist reduced my dose to 10 mg, last year I talked to her about taking just .5mg due to side effects and she agreed. I had found a very small "lump" - BB sized in areola of effected breast this past December - had my six months check up with breast surgeon and told her about it - she did an ultrasound - it's very close to the skin, breasts are small but very dense and she wasn't sure what it was and said we'll watch it. I had a diagnostic mammogram August 30, 2021 the tiny spot didn't show as being anything of concern but radiologist also did an ultrasound to see if it would show up - you can feel it - but with dense breasts he wasn't able to really see it - he said it would be very hard for him to biopsy. I had a follow up with breast surgeon already scheduled in a couple of weeks and he said to wait and see what she said. When I saw breast surgeon she ordered a breast MRI which I had this past Monday. (During this past year, I was caring for my 93 yo mom who passed away on her 94 birthday two days before I had the follow up with the surgeon). I haven't put my needs first this year but what do you do when your mother is dying and you want to be there for her. The radiologist called me on Wednesday and told me there is a 13 mm mass in the right breast which he said looks "suspicious" plus a 10 mm mass in my left breast which he said might be a cyst or a lymph node he's not sure but needs to be biopsied, plus the tiny spot that first started all this in the rt breast. Needless to say I was shocked, how could the two larger areas not show up on a 3D mammogram that was taken only a month and a half before but found a tiny 2mm mass three years ago that was deep. And there's more, the MRI showed spots in the liver but these also showed up when I was having an intestinal problem in 2016 when I had a CT scan and they believed they were cysts but due to my previous cancer history he recommended a liver CT. Biopsies are scheduled for this Tuesday, October 20, and a liver CT on Thursday. My husband and I were just beginning to make plans for some travel and adventures now that I can be out of town for more than just a couple days and it's like all the air has been sucked out of me. I'm praying a lot and very thankful for my strong belief in God. But my mind keeps wondering to all the what if's. I had told myself a couple years ago if the breast cancer returned I would have a double mastectomy and because of my age I would go "flat". I'm a very active almost 72 yo. I'm comfortable with that decision and my wonderful husband supports me. I'm afraid I'll have to have chemo, etc., etc, I know worrying won't change the outcome so I'm staying very busy. Ready for some answer and get a plan!0
Peaceful02 - I’m sorry that you find yourself back on this site with a new diagnosis. I know that you thought (hoped) that you had left this all behind. I know there was a lot of anger when I found myself facing bc yet again and I am truly sorry that you face this wicked disease a second time too. Hopefully, you have gotten many answers to your questions and know what to expect going forward from your doctors. While I can only imagine how shocking your diagnosis was considering the lack of detection from ultrasound and mammography, there are many positives to focus upon. Your doctors will be watching you very closely now and will use the technology that works best for you going forward. You should have your biopsy reports back, which will direct the treatments needed. You have made some great decisions already and should feel confident with your decision for DMX and your choice to go flat. You have a husband who supports you and a strong faith in God. All of these things will help you through. Yes, surgery is hard for those of us who are active and independent. But you will get through it. Yes, chemo is also hard and unknown for you. But many women here get through it and so will you. And while I can’t see what the future brings for any of us, I hope that we will all find ways to adjust, morph and evolve into better women on the other side. Wishing you comfort0
dontwantthis Member Posts: 17
I had my 1st cancer in 2007 (lumpectomy, chemo and radiation). January 2021 diagnosed with cancer again exact same type, breast and almost the same place (Oncologist called it a new cancer, she said after so many years they dontcall it a reoccurence).
I decided on a bmx (my breast surgeon and I had a big disagreement about it) she said "why would you remove a healthy breast, if it is because of anxiety we can get you pills", and also said "you could get colon cancer or other cancer" which was great to hear since I have the colon cancer gene. In the end I basically told her "my breasts my choice" she was not happy.
On March 9th I had my BMX with expanders (because of my previous radiation they needed to try and stretch the skin). On October 1th I had the expanders removed and implants put in (unfortunately they look like something out if a horror movie), the shape is horrible, they don't match and the right side is very tight.
Anyway, the other day I felt a tiny lump (the size of a needle head) under the skin on my right breast. The Oncologist said she doubts it is anything to worry about, we will monitor it. The other day I noticed I have a very weird red mark right around the lump (almost like a bite) but not itchy and doesn't hurt.
Should I be worried? I finished my Taxol in August and I am still taking Herceptin (until the end of May (could cancer come back that quickly, or could it have been missed)? I feel like after Herceptin (because of already having it twice), there should be some further treatment.
Would love your thoughts!
Prayers and love all around!0
GreenEyes81 Member Posts: 66
Hi dontwantthis - You have had a busy year. I have been googling a TON on skin mets as I have a spot being checked Tuesday - I would not hesitate to get that further looked at.
Your overall story regarding your doctor - is horrific. To have to argue to go with your gut is sad. Our guts know more than science sometimes. The fact you have an ongoing trend of simply being dismissed would be enough for me. So what if this skin thing is nothing....what if next time its not and she still just dismisses you? I personally would immediately transfer care and get another opinion. Both for onco and possibly your plastic surgeon. Or at least have a very frank conversation regarding the implants and their current situation.
Peace of mind is the best medicine.0
ileepak1 Member Posts: 4
yes…. Same scenario for me … just got second diagnosis last month and having breast cancer in the left breast in 2019 … it’s now in the right breast … stopped taking tamoxifen after about 5 or 6 months due to side effects …. How are you doing now0