Posted on: Jan 17, 2009 05:17PM
I've just had a recurrence after a bilat mastectomy 15 months ago. Just wondering if anyone else has had this?? I thought I was done with breast cancer after removing both breasts! I did not have rads, chemo or tamoxifen last time. Just had my "lumpectomy" and 5 LN taken out this week, and still waiting on the pathology report. Looks like probably radiation this time and tamoxifen but not sure yet about chemo. Will know more at my follow up appt this week. I guess it was good I found it early - it was right there under the skin. Seems like I read 1% recurrence rate after mastectomy but that seems high to me since I haven't read much about it. Anyone else have this? Thanks, LauraLog in to post a reply
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Feb 6, 2020 08:44AM KBeee wrote:
Uuugh. Keep us posted. Sorry you have this added worry. Hoping it is just a swollen reactive node.
Feb 6, 2020 09:03AM - edited Feb 6, 2020 09:06AM by Legomaster225
Hoping for the best outcome for you. I had a small lump that had to be biopsied too. It is so scary! Wishing you the best next week.
Feb 6, 2020 11:42AM Artista928 wrote:
Hang in there. I've had some questionable small lumps questioned and scanned even when the doc said it's fine. They can't say 100% so to be safe, they scan.
Apr 16, 2020 10:54AM snowflake22 wrote:
Just had surgery yesterday for recurrence after bilateral mastectomy 1 year ago.
Last year I had a low oncotype score of 10 with no lymph node involvement and so did not have chemo or radiation, but was given tamoxifin. I really thought I would never have to worry about this again, a closed chapter with that low score.
Tumour recurrence was already 1.5 cm on ultrasound, does not appear to have lymph node involvement but surgeon did lymph node dissection to be sure. I worry about the prognosis of short time of disease free interval, although the cancer is localized. Is this on your minds too?
Apr 21, 2020 11:03AM slmdavidson wrote:
I also had a recurrence 15 months after bilat mastectomy (I created this post in 2009). I did not have chemo, radiation or hormone therapy as mine was originally DCIS. I am now 11 years out from my recurrence and have had no issues. I believe that there was some cells left over after the mastectomy. They can't guarantee to get every cell and my disease was multi-focal. It takes years and years to grow a tumor, so my belief is that my second tumor was something "left behind". I am here though to tell you that all of that is now behind me and I pray the same for you. Feel free to PM me if you want to talk! Take care and wishing you the best.
Hugs and prayers,
Apr 26, 2020 12:55PM buttonsmachine wrote:
Snowflake, I had two "local recurrences" after my initial treatment, also very quickly after going through treatment the first time. Some doctors I consulted with thought that I had a "persistence" rather than a true recurrence. In short, cancer cells were most likely left behind and continued to grow. It's definitely not an ideal situation, but it can be dealt with.
As for worrying about survival - I think does weigh more heavily on those of us who have had the cancer come back locally - but as my MO reminds me, we are treating this with curative intent. It's still a tough situation though. Hugs and best wishes to you.
May 4, 2020 04:13PM KBeee wrote:
I am sorry you are dealing with this. Try to get your docs to do an Oncotype. I had one doctor at a Nationally renown medical clinic refuse it for me, saying he was "sure my docs just must have "left a little behind. I even offered to pay for it. He was insistent that it would be low. My gut told me otherwise, and my gut has never been wrong. When I met with a new local oncologist who came highly recommended, I asked him about it. He said absolutely! He said it made sense to have all information possible when making chemo decision. I didn't even have to pay for it; my insurance covered it, which was a pleasant surprise! The first time around, my oncotype was 16; the second time it was 40! My oncologist called my result "practice changing" for him. Based on those results, the doc at major medical clinic changed his tune that chemo was recommended. You may not have this result at all, but having all information possible to make treatment decisions is important. I hope you are recovering well. My recurrence was soon after my first diagnosis too, but so far (knocking wood) I have done well since then.
May 12, 2020 05:15PM snowflake22 wrote:
Hi Laura, Karen, buttonsmatch-thanks for sharing your reassuring personal situations. I am feeling much more positive and have chemo next week-I feel that having not had the chemo before and getting it this time is going to nip it in the bud for good. My surgeon also referred me to a radiation doctor that has been doing studies on radiation for breast reconstruction, so I'm in good hands.
Karen-I decided not to get another oncotype score because I want to get the chemo asap and the wait for the test could be a while from what I remember, and no matter what it says after last time I'm going to have doubts.
Jun 23, 2020 10:43AM KBeee wrote:
Julie, It sounds like you made a very well informed decision. I hope all is going well with chemo and that you joined the group for the month you started on the chemo boards. I still am in touch with many of the gals from mine!!
Jun 27, 2020 12:13AM Mavericksmom wrote:
Hi, I was reading the comments here and I am wondering if any of you could offer some advice?
I had a left breast mastectomy in January of 2019 with DIEP reconstruction for ILC. In 2003 I had IDC in the same breast, treated with two lumpectomies, chemo and 33 radiation treatments during which I was severely burned. I do have large areas of scar tissue in the reconstructed breast skin tissue.
A few days ago I noticed a small lump, about the size of a small pea, on my reconstructed breast. It is hard but doesn't feel like the other areas of scar tissue.
Is it even possible for a recurrence to show up under the skin on the top side of a reconstructed breast? I always assumed they only occurred at the incision area.
I just had an MRI in May, for an area of concern in my real breast, and the report was negative for any malignant or non-malignant growth on either breast.
I don't know if this is something I should tell my doctor about or just wait until my November appointment?
Jun 27, 2020 01:24PM MinusTwo wrote:
MavericksMom - Since you've already had a recurrence and had both IDC & ILC, I would call the doc. With an MRI in May, I hope all is OK, but better to ask the question.
Jun 27, 2020 02:13PM Mavericksmom wrote:
Thank you Minus Two!!!!! I will call my doctor on Monday. I realized that part of this is my fault because I never did self "fake breast" exams, I focused only on my real breast. Now I know I should do both, regardless of what this is. I actually saw the bump in the mirror, otherwise I still wouldn't know it was there. By not doing self exams on my reconstructed breast, I really have no idea if this is lump is new or has been there all along. I don't remember it being there prior to my surgery, as I was pretty good at doing regular self exams after my Dx in 2003. It could very well be a bit of scar tissue, but I agree, better to ask than to self diagnose.
It is ironic too. I have a strong family history of breast cancer and wanted both breasts removed, but my doctor said they don't remove healthy breasts at that hospital, unless a woman is BRCA +. I am BRCA negative. I now see another side to it. Reading what others posted on this thread made me more aware of the fact that mastectomy REALLY isn't 100% either! As for the low percent of positive recurrence after mastectomy, my oldest sister had both IDC and non-Hodgkins Lymphoma at the same time. She developed a third cancer, MDS, from the radiation to treat the other two. There is a less than 1% chance for that to happen, but she was in that "unlucky" club. I guess when we hear a low percent about anything cancer related, we tend to forget that it still can represent a lot of people.
Growing older, growing wiser.
Jun 27, 2020 02:21PM MinusTwo wrote:
Mavrick's Mom - hope it is scar tissue or maybe a cyct. Fingers crossed.
BTW - I had dense breasts and never did self exams since I couldn't tell one lump from another. I did have bi-yearly and then yearly mammograms & eventually ultrasounds from the time I was 28. Everything was clean for 40 years.
Since it is a woman's option to have both breasts removed - for symmetry if nothing else - I'm so sorry to hear that there are still doctors arguing that issue. I was so glad my "good" breast was removed too, since it turned out it wasn't 'good' after all.
Jun 28, 2020 10:18AM Mavericksmom wrote:
Minus Two, I don't know what it is and because of that, I decided I am making an appointment with my MO not with her NP, who I see for normal follow up visits. I really hope she will want a biopsy, unless she is 100% sure it is scar tissue. I don't know how she could know that for sure. The only thing that would make me think it is ok to just observe for a period of time and not do a biopsy, is if there is mention of this area in my records somewhere. I don't remember any mention about this spot before, but maybe there was and I just forgot about it, since much of what went on the first 9-12 months after my reconstruction is a blur to me now.
I guess I was feeling very "cancer free" after the MRI showed no areas of malignant or non-malignant tumors and this showed up out of nowhere. Now I keep wondering if there is any way that the MRI missed this. I read somewhere that cancer cells take two months to double in size, so I assume it was about this same size on only slightly smaller 4 weeks ago. Not sure for what grade they are referring to in reference to the two months.
Anyway, I am going to get it looked at and then I can put my mind at ease and focus on losing weight and being healthy! I will let you know what I find out, but it may be a while before I can even see my MO.
Jun 28, 2020 04:56PM KBeee wrote:
I am glad that you are getting it checked out. No imaging is perfect, so you are wise to get it checked. I had a doc tell he was 99% sure me a lump was benign, but my gut (which has never failed me) clearly told me it wasn't. I asked for a biopsy and it was malignant. I have had multiple other lumps, all of which were fine...and my gut said so then too...though I was no less nervous. Keep us posted.
Jun 28, 2020 08:29PM Mavericksmom wrote:
Thank you Karen! I wish I had your “gut” because my gut isn’t being too helpful. Sometimes I feel certain it is a recurrence and sometimes I feel like it is scar tissue. But, one thing I do know is I must get this checked out! I do hope I don’t have to wait too long for an appointment. I will let you know what I find out when I see my doctor.
Jun 29, 2020 09:23AM Mavericksmom wrote:
I was able to get an appointment on Wednesday, July 1st, the same day as my appointment with Risk Assessment. I was surprised as that never happens for me. I am taking it as a hopeful sign that it is something benign or at least I will find out what it is sooner than I expected. I REALLY need to put all my focus on losing weight and building strength, so the sooner this is solved the better. That is not to say that I am not watching my diet and exercise now, but just that I want to be able to focus on that more.
Jun 29, 2020 11:34AM MinusTwo wrote:
Mavericks - keeping you in my thoughts. Let us know.
Jun 29, 2020 12:47PM Mavericksmom wrote:
Minus Two and KBEE, Lesson learned: When scheduling seems too easy, it probably is! Just got a call from my doctor's office and I need to reschedule my visit. She will call me back, but the appointment won't be on Wednesday. I will let you both know when I find out results. Thanks so much for keeping me in your thoughts.
My emotions have gone all over the place in the past year and a half. I went though months of being in shock after I was diagnosed with breast cancer a second time after 15 1/2 years, then I spent a l-o-n-g time being angry and upset at being refused a bilateral mastectomy, then I went from being super concerned about everything, to feeling I can "forget all about breast cancer" for at least a year, (following negative MRI), to feeling as I do now, that recurrences can happen, even with mastectomies (I knew that before, but didn't think it applied to me, if you get what I mean), and that I should follow the treatment plan my doctor set for me as far as follow-up visits go. I still feel this is nothing, most likely scar tissue, but I know I need to have it checked out just to be sure. Surprisingly I am not worried because I know either it is good news and I just need to start doing monthly self exams on both my real and fake breasts, or worst case it is cancer and my doctors will treat it the best way possible.
I don't know if anyone can relate to that, but I feel that I have been "eating my words," a lot in the last year and a half and maybe I just need to "lighten up" a bit and learn to go with the flow.
Jun 29, 2020 02:46PM BlueGirlRedState wrote:
This is 3rd time BC for me. My MO thinks occurence is "new" rather than recurrence, but admits there is no way of knowing. It seems like monitoring is almost non-existent if you've had a bilateral. She wants me to do more genetic testing. Did this last year specifically for BC, Over 20 markers checked, none found, so why do more testing? I am now taking Ibrance and Arimidex, tumor shrank from 2.5 cm Sept 2019 to 7 mm April 2020. I asked if PET would be used if cancer seems to shrink to oblivion, and she said "no" because of radiation risks vs benefit. I am worried about those rogue cells and suspect they are the cause of the 2nd and 3rd cancers. Concerned about getting new tumors as well as metastasis, having them get really bad, without early detection.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast, mammogram. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Started Anastrozole, quit after a few months, joints, Several months later started Tamoxifen.
2019 ER+ R-axilla. My Right arm had swollen up. Scans found tumor. Biopsy revealed cancer. Started Ibrance and Arimidex.
Jun 30, 2020 09:29AM Mavericksmom wrote:
Hi Blue Girl, I am so sorry you are going through this a third time. Hope "three times is a charm" applies to this and you won't ever have to get a cancer diagnosis again!
ER+ doesn't give a lot of information, but sounds like your doctor is on top of it.
As for the genetic testing, I can hopefully give you more information tomorrow because I am in the same situation. I had genetic testing for BRCA genes in 2004 and I think 2008. Both were negative for defects. I assumed nothing more to do. I don't have the answer now, but my MO wanted me to see a Risk Assessment counselor again. My appointment is tomorrow. I know there are other genes with links to breast cancer, but will find out if it is worthwhile for me to test for them. You should know that this is the third time I scheduled this. I canceled twice before, I just wasn't in a good place emotionally to be receptive to it. I am in a much better place mentally now, than I even was two or three months ago. I made this appointment 6 months ago and was glad when they said July 1 because I work in a school and I wouldn't need to take off from work for it. Little did I know that the other "big C" would arrive on the scene. I am not worried about increased risk of Covid as this, and all my cancer follow ups and tests, are at a cancer hospital with no Covid patients. They do extensive screening, and I try to quarantine myself for at least 7 days before I go there. I only go out for groceries and my area has seen a decrease in the disease. So, not 100% but I feel as safe there as I could be. It was the first appointment they had when I made it. Genetic testing is not something you probably need to do now if it wouldn't directly effect your treatment. Mine won't change my treatment, I am doing this for my children, grandchildren and nieces/nephews. I have a high rate of breast cancer in my immediate family.
Sounds like you are already on medication to deal with any "rogue" cells. I am going to have a lump checked on Thursday and while most likely benign, nothing was mentioned about it on mammogram, ultrasound, or MRI 4-6 weeks ago. I still want it checked out. It is tiny. We know our breasts, real or reconstructed, better than anyone else. KBee relies on her "gut" and I think that is sound advice for all of us.
Jun 30, 2020 01:18PM moth wrote:
BlueGirlRedState - I know many MOs are reluctant to do scans if there are no symptoms of spread. Keep in mind it likes to spread: bone, liver, lung, brain. Any symptoms related to those should be reported & followed up. Blood tests can be a clue - if you run liver function tests for ex, anomalies can be sign of a liver met. Afaik, the stats still show that 30% of early stagers will develop mets eventually. With 3 run-ins with it, I think I personally would want a baseline scan of some type.
CT scans are about 1/2 the radiation of PET, btw. MRI doesn't expose you to any radiation.
Jun 30, 2020 04:19PM KBeee wrote:
Bluegirl, sorry you're going through this again. Hoping it's gone for good this time. By the way, I'm a blue girl in a red state which brings many non-cancer challenges to my life!!!
Maverick'smom, do keep us posted. I am sorry your appointments have been postponed. How frustrating!!!
Jun 30, 2020 07:10PM LillyWasHere wrote:
I was never told what are the symptoms of spread. Pain? Weight loss? What else should someone look for. What do doctors check if they don't want to order scans.
Jul 1, 2020 09:02AM helenlouise wrote:
hi lily, we are wary of any symptom (pain, dysfunction) that is persistent for two weeks plus. Of course any major event that can’t be otherwise explained should be considered for metastases. It’s hard when the cancer can effect so many different parts of the body.
Jul 1, 2020 10:39AM Brooklyn1234 wrote:
So sorry to hear about your recurrence.
I'm also in that club. Had a mastectomy and chemo/herceptin for my stage 1 cancer a decade ago. Right about on my 10 year anniversary I was diagnosed with a 1.6 cm tumour on my mastectomy site. Went through a lighter course of chemo this time, plus radiation (which I hadn't done before). They are saying it does happen, although very rare (1 percent chance). Best guess is that a few stray DCIS cells were leftover, since mastectomy can't get rid of every single breast cell. If that happened, then it makes sense, since chemo and Herceptin can't kill DCIS, and it would have taken a decade for one or two cells to turn into a small tutor.
If you are at the start of this process again, I will say that I found it a bit easier the second time around because I know a lot more about what to expect. Also, treatment and prognoses have improved in the past decade, so I did find the cancer centre a more positive, optimistic place.
Jul 1, 2020 01:45PM moth wrote:
just to clarify, mastectomy reduces risk of locoregional recurrence to 1%. It does not affect risk of metastatic recurrence (here's one reference https://www.hopkinsmedicine.org/kimmel_cancer_cent...)
On this UK site, if you scroll down there are some infographics about metastatic recurrence and symptoms. They call metastatic disease "secondary", just fyi. https://www.abcdiagnosis.co.uk/about-abcd/secondary-breast-cancer/
Jul 1, 2020 03:26PM LillyWasHere wrote:
Thank you Ladies. Seems like typical symptoms from AI :)
Jul 1, 2020 03:27PM Mavericksmom wrote:
I feel stupid asking, but what specifically is considered the chest wall? I had a skin sparing mastectomy. I assumed I could get a recurrence anywhere under the skin of the breast because they can’t remove all the breast cells, but everything I read included the above links, mentions “chest wall.”