Topic: Difference between recurrence and new primary cancer

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Apr 12, 2021 07:29PM - edited Apr 12, 2021 07:29PM by RedMoon

Posted on: Apr 12, 2021 07:29PM - edited Apr 12, 2021 07:29PM by RedMoon

RedMoon wrote:

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.

Surgery 9/6/2017 Lumpectomy; Lymph node removal: Sentinel Dx 4/2021, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 5/20/2021 Lumpectomy: Left; Lymph node removal: Left Radiation Therapy Whole breast: Breast
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Oct 8, 2021 03:25PM elle2 wrote:

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!

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Oct 8, 2021 03:49PM moth wrote:

Elle2, have a read through this thread. Beesie has compiled many studies which look at surgical outcomes

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/15/2020 Femara (letrozole) Radiation Therapy 3/3/2021 External Local Metastases 3/3/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other
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Oct 8, 2021 04:27PM wrote:

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.

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Oct 10, 2021 05:53PM elle2 wrote:

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 breasts

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Oct 11, 2021 10:58AM wrote:

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).

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Oct 16, 2021 11:44AM Peaceful02 wrote:

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!

Dx 8/2018, DCIS, Right, <1cm, Stage 0, Grade 1, ER+/PR+, HER2- Surgery 9/6/2018 Lumpectomy Hormonal Therapy 10/12/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 24, 2021 11:29AM elle2 wrote:

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 comfort

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Jan 18, 2022 03:59PM dontwantthis wrote:

Hi all,

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!

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Jan 19, 2023 02:03AM greeneyes81 wrote:

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.

Dx 7/21/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/9/2017 Lymph node removal; Mastectomy; Mastectomy (Right) Dx 4/18/2018, DCIS/IDC, Right, Stage IA, Grade 1, ER+/PR+, HER2- Surgery 5/2/2018 Radiation Therapy 5/27/2018 Whole breast: Breast, Lymph nodes, Chest wall

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