Mar 10, 2020 12:15PM farmerlucy wrote:
I would call the Oncotype people directly on that. I was thinking it was .3 mm.
Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.
Posted on: Mar 10, 2020 11:53AM
I'm moving over here as my biopsy results showed a local recurrence near the mastectomy scar in my reconstructed breast (DIEP). I was fortunate to catch it early (only 4mm), but I'm still very concerned about the future and risk of mets and potential for shortened survival. I have read several peer reviewed journal articles and although I know you can't assume you are in the "bad" part of the statistics....its still daunting to see the change in my prognosis :-(
I have a CT scheduled for tomorrow and a bone scan is also ordered to check for mets, but not scheduled yet. I meet with my new Radiation oncologist on Thursday and then my Medical oncologist on March 31st for the results of the scans and other treatment plans. I don't think I have any symptoms of mets...but the fatigue I have and every twinge or chronic achy pain I've had over the last year and a half is weighing heavily on my fragile emotions. I'm very much hoping they are all related to Tamoxifen and getting "older" (Ha - I don't feel old at 44!!)
Assuming my scans are clear, my surgical oncologist stated that chemo would be very unlikely, given the size of my recurrence....I'm not sure how to feel about that. I was not offered chemo before (Oncotype = 14). I have read that Oncotype can't be done on a tumor less than 0.5mm? Is that true?
Can others share their personal experiences and what their doctors recommended? I feel like I want to be aggressive and hammer this bugger, since it isn't behaving - but understand that the data just isn't there to fully support chemo in HR positive recurrences (assuming I'm HR positive again, but by biomarkers aren't available yet).
Thanks everyone in advance. This site is so supportive and helpful!
Posts 1 - 30 (39 total)
Mar 10, 2020 12:15PM farmerlucy wrote:
I would call the Oncotype people directly on that. I was thinking it was .3 mm.
Mar 10, 2020 01:03PM Beesie wrote:
I think the Oncotype test can be run on a 4mm tumor. The problem is that the clinical trials used to develop and verify the Oncotype results did not include tumors that small. So it's very questionable as to whether the results would apply. For example, for someone your age, an Oncotype 25 would usually confer a 9-year metastatic recurrence of ~12% with hormone therapy alone versus 8% with chemo + HT. However with a tumor size of 4mm, the risk with HT alone might be considerably lower, and the addition of chemo might confer no additional benefit and in fact might cause more harm. (The recurrence risks I quoted are from the TAILORx study). I think that's why the Oncotype test is only recommended for those with tumors of over 5mm, and even for group, it is not recommended for patients with <5mm - 1cm tumors that are grade 1.
Mudstick, I notice in your signature line that you mention that you had a positive anterior (at the skin) margin after your MX. Was this treated? I'm wondering whether this recurrence is an indication of the aggressiveness of the cancer, or if it's just the result of some cancer cells being left behind that almost inevitably would develop into a recurrence. While the cells close to your anterior margin were DCIS, in the majority of cases of DCIS recurrences after a MX with close margins, the recurrence is not found until after the DCIS cells have evolved to become invasive cancer.
Mar 10, 2020 04:46PM kbram wrote:
Mudstick, I had a very small (3mm) recurrence on the chest wall. I had surgery to remove it, chemo and then radiation. My MO wanted to throw everything at it since I had a mastectomy the first time around. Good luck with whatever you and your medical team decide!
Mar 11, 2020 05:58AM Mudstick wrote:
Beesie - Thanks for your reply - I believe you are absolutely correct. My positive margin was never treated and this recurrence is the result of the left over cells being able to grow despite Tamoxifen. Because it was DCIS my MO said it was "wimpy cancer" and not to worry about it. Neither the Surgical oncologist or Radiation oncologist recommended any further treatment....So I'm pretty sure the hormone profile will come back the same as my previous cancer. Its disappointing in hindsight, but I suppose if there aren't any mets, then I'm not in a worse position than before. I feel like I fit somewhere in between low and high risk, due to the LVI and extent of disease at the time of my first diagnosis.
kbram - Thank you so much for sharing your experience. Hope you are doing well now. Was your recurrence recent?
Mar 11, 2020 03:16PM SuQu31 wrote:
I don’t have any information to add, but I’m sending positive thoughts your way. I’ve been following your story with interest, as I had re-excision for a close margin after bilateral mastectomy, and although the reexcision was benign, I don’t know how they can be sure they removed everything. I’m so glad you pushed for a biopsy and caught it when it was small. Please keep us posted
Mar 11, 2020 03:35PM Beesie wrote:
Mudstick, your doctors were negligent. That's not something I say lightly or would say very often. I realize how subjective diagnostic and treatment decisions are, how much gray area there is, so I usually give doctors the benefit of the doubt. But for those who have DCIS only who have a MX, additional treatment is almost always recommended if the margins are positive. For chest wall margins, a re-excision (if possible) or rads will be recommended. If positive margins are at the skin, often this skin will be removed. It is well understood how risky it is to leave DCIS in the margins - the sole objective of surgery for DCIS is to remove the DCIS before it can develop into an invasive cancer, so why would any surgeon or MO knowingly leave some DCIS in the breast? There is a lot of debate about what to do with 1mm margins - often additional treatment is recommended but sometimes not - but no surgeon should knowingly leave positive margins, even with DCIS.
In your case, just because you had a more serious invasive cancer does not mean that the DCIS in the margins should have been ignored and downplayed. Given that you would be treated for the IDC, the only treatment necessary for the DCIS was removal - and your doctors failed to do this.
Thankfully your recurrence is tiny and appears to be completely localized and therefore will hopefully not in any way change your prognosis. You are lucky - unfortunately there are members of this site who had close/positive margins for DCIS who were not so lucky.
Mar 11, 2020 04:13PM kbram wrote:
Mudstick, my recurrence was five and a half years ago. I am doing well but always on the look-out! Still go to my MO every six months for check-ups. She told me that a chest wall recurrence makes me high risk. Going to my breast surgeon once yearly at this time. I had a double mastectomy so my recurrence was unexpected. Just goes to show how sneaky cancer can be!
Mar 11, 2020 05:18PM Mudstick wrote:
Beesie - I agree with your summary...unfortunately, I was too compliant when they said no need to go back into surgery or do radiation. I think I was happy that I was "one and done". Looking back, I wonder whether the immediate reconstruction/DIEP played into some decisions for the SO not to go back to surgery (could they or would they know definitively where the margin was or would the re-excision affect healing or aesthetics).....poor excuses, I know. I guess what is done, is done and it is what it is. As much as that sucks, I can't go back and I can't imagine pushing/fighting/complaining now. I keep my fingers crossed that there are no consequences.....
CT of chest/abdo/pelvis done today. Bone Scan appointment still waiting for scheduling. Probably won't know the results until March 31st when I meet my MO.
kbram - Cancer is definitely a sneeky sob. Glad that you are so far out and no further recurrence! I wish you all the best and hope that sucker is gone for life :-)
Mar 12, 2020 03:32AM Jacfin wrote:
Waving a hello from Oz. Much to my surprise I am also making an appearance here again after 4 and a bit years. I’ve just been diagnosed with a recurrence in the dermal skin tissue over my reconstructed breast. Had a skin sparing mastectomy for high grade DCIS (17.5cm) in 2015 and after a difficult recovery have been living a cancer free life for the past 4 years.
Just before Christmas I found a lump which I have had investigated over the past few weeks - with absolutely no one expecting it to be breast cancer. A lumpectomy later and appointment with my SO today reveals it is invasive BC. Have another surgery next week because the margins were poor and a day of scanning tomorrow to see if it has snuck in elsewhere.
On the upside it is low grade and my biopsied lymph node was negative so I feel optimistic but I am so puzzled that this could happen when it was DCIS and there is no breast tissue involvement in this new tumour.
Thoughts and hugs to all who are experiencing similar shock. What a thing!
Mar 12, 2020 06:58AM Mudstick wrote:
Hi Jacfin - Sorry to hear about your situation. Good luck with your scans tomorrow! I'm hoping they are negative - I'll be thinking of you, keep us up to date.
I have visited Perth (and most other parts of Oz) and I have to say it is one of my favorite cities!!!
Mar 12, 2020 09:14AM Beesie wrote:
Jacfin, think of the breast as being like a bowl of spaghetti (well, hollow spaghetti). The spaghetti are the ducts, and sauce is the breast tissue. The bowl is the skin and chest wall that encloses the breast. The spaghetti (ducts) twist and turn throughout sauce (breast tissue) and sometimes even sticks up again the bowl (the chest wall or the skin). So it is entirely possible to have a MX and still have a microscopic amount of ductal tissue stuck up against the chest wall or the skin. Within that ductal tissue, there can be some DCIS cells. Over time, these DCIS cells can continue to develop and eventually transition to become invasive cancer.
Although DCIS recurrences after a lumpectomy tend to be DCIS about 50% of the time and invasive cancer 50% of the time, for some reason if there is a recurrence after a MX for DCIS (or Mudstick, in your case, a MX for IDC but it was DCIS left at the margins), the recurrence is much more likely to be invasive cancer than DCIS.Locoregional Recurrence After Mastectomy for DCIS More Common Among Younger Women, Study Finds
"Of the 3,063 cases identified by the researchers, the median age was 49 years, and more than 1,500 were women younger than age 50. The median follow-up was 76 months. As Dr. Mamtani reported, of the 33 locoregional recurrences observed, 32 (97%) were invasive, 22 (67%) occurred in the chest wall, 8 (24%) occurred in regional lymph nodes, and 3 (9%) occurred in both the chest wall and regional lymph nodes."
During the 10-year analysis period, eight LRRs were noted, all in the SSM group. There were no local recurrences after simple mastectomy. Kaplan–Meier analysis demonstrated that overall 5-year LRRs were 3.1% at 5 years and 5.6% at 8 years. LRR rates were higher in the SSM group, which had a 5.9% 5-year LRR compared with 0% in the simple mastectomy group (p = 0.012, log-rank).
Univariate analysis identified two factors that predicted risk of recurrence: a young age at mastectomy (<50 years of age) and close (<2 mm) or involved margins. Screen-detected LRR was 4.5% (6/132), similar to 3.4% (2/59) for symptomatic presentation. In general, high-grade and ER-negative tumors were more likely to recur, however there were insufficient events to confirm this.
Analysis of Recurrence
All eight recurrences were IDC and presented as a lump either on clinical follow-up or symptomatically. Invasive recurrence represents a loss of local control and therefore potentially increases patient mortality. Median disease-free survival time was 55 months (range 15–106 months). Four of the eight recurrences had surrounding DCIS alongside the invasive component."
Mar 12, 2020 05:09PM Jacfin wrote:
Mudstick how lovely that you have visited Perth, most folk have never heard of it. It is a beautiful day and I have a view of the sparkling Swan River as I wait around for the scans so that’s another positive.
Beesie thank you so much for that analogy and the links to research. Both extremely helpful and much appreciated. Looks like I was exactly the characteristics of the mean sample in that first study.
I will let you know how I go.
All the best to you all.
Mar 13, 2020 09:21AM SuQu31 wrote:
Beesie, thank you for posting those links and for helping us understand our risk of recurrence. I feel like my surgeon was not as specific as I would have liked about recurrence risk. Also, and something I've wondered for some time, why is there no age range at diagnosis in the signatures here? I'm guessing that others, like me, compare their circumstances with the other women here as part of our learning experience. It seems like age at diagnosis is an important factor.
Mar 13, 2020 10:03AM Mudstick wrote:
Thank you Beesie for the information.
I met with the RO and will be doing radiation starting early April. Still haven't met with MO, but all the docs so far have said that chemo is very, very unlikely. Since there isn't great data about the benefit of chemo for HR positive recurrences, I feel a bit stuck in the middle of wanting to be aggressive and being OK with not doing chemo....
Mar 19, 2020 03:42PM KBeee wrote:
I am 5 years out from a recurrence in 2 places and am doing well (knocking wood).
Mar 20, 2020 05:42AM Jacfin wrote:
Just sending a “hello” from downunder. I am sitting on my balcony getting some fresh air on a lovely balmy night.
Two days out from my re-excision surgery and recovering well. They think we have good margins this time.
It has made me laugh that my reconstructed “foob” is about twice the size of my natural breast today. After having a surgeon dig around in the same spot twice in three weeks I am pretty swollen and bruised. But not much pain.
Five years ago it was the other way round. I had a HUGE natural healthy breast and a tiny bump with an expander post mastectomy. I was convinced my natural boob had migrated to the centre of my chest so I called it a uniboob.
My hubby has left today to go to Sydney which is on the other side of Australia to where I live. (Think LAX v NYC) Our daughter finishes her contract in Sydney in a couple of weeks and has given notice to quit her apartment. We are desperately trying to get the apartment packed up and have them return to Perth before more travel restrictions are put in place. She lives and works in the epicentre of the Sydney outbreak of COVID-19. This has been more stressful for me this week than dealing with BC.
I hope those waiting for news about next steps are well and staying out of COVID-19’s way. Next medical news for me will be Thursday.
All the best Jac ❤️
Mar 20, 2020 08:28AM Mudstick wrote:
KBeee - I appreciate your comment. Its so nice to hear of success stories! I wish you all the best for the 50 years :-)
Jacfin - Glad to hear you are healing and recovering well. I hope your plans to bring your daughter back to Perth run smoothly!! This is certainly a crazy time. Enjoy the quiet and warm outdoor breezes any chance you get.
We ended up having to cancel our spring break plans :-( Everyone in the family was crushed. The kids hadn't ever been to an all-inclusive beach before and we were all looking for some sunshine to get away from a long cold winter and medical appointments!
My medical appointment are jumping around and moving all the time. I did hear from my RO last night and she gave me the great news that my CT and Bone scan came back clean - PHEW!! I meet with my MO on March 31st and if he does not recommended systemic treatment (i.e. Chemo), then I do my radiation planning session the next day, with the first treatment scheduled for March 9. 25 sessions total. The RO is still debating whether or not to irradiate my nodes. She discussed with the tumour board, but there wasn't a clear consensus. I'm leaning towards saying, Yes. Just to have a bit of an extra safety blanket....my risk of LE is considered low. I'm young, active and normal BMI.
What appointment do you have on Thursday?
Mar 22, 2020 07:58AM - edited Mar 22, 2020 09:29AM by Jacfin
Mudstick - I am so sorry that your family has had to cancel plans for a holiday together. Our family holidays (vacations) are the most precious memories. I hope you get to shift time and have that vacation together in the not too distant future.
I am a very tough gal usually but have been in tears most of today. My hubby and daughter have been working the clock to get out of Sydney before borders close. I need them home and they are so far away. We have them on a flight due to land two hours before borders close on Tuesday. I haven't mentioned that DD is due to get married in July. That is looking daily as a long shot. I am sad coz their first wedding date was delayed because of my first cancer diagnosis. They have been engaged 6years and now the second wedding date is looking tenuous.
Anyway, it could be worse, right?
Sorry your appointments are all over the place. It just ramps up the stress. That’s great news that your scans were clear though. Now on to treatment.
On Thursday I should have results of bone scan, CT scan,latest pathology. Then hopefully a treatment plan.
Love and health to you and all our BCO sisters and brothers
Mar 24, 2020 05:11AM Mudstick wrote:
Oh dear Jacfin! That sound terribly stressful :-( I really hope they were able to make it home in time. Its so hard when your support system isn't available. I'm so sorry to hear about your DD's strife trying to get a wedding off the ground. I really hope something can come together during or after this crazy lock-down time.
I'm going to work with my supervisor today (hopefully) to figure out a plan for work while in treatment and with my two school age kids home. I don't have a tonne of sick leave left after using lots from the last 2 surgeries and I had a significant injury back in 2016 as well. They are usually very helpful and flexible, so I'm optimistic, but still feel guilt about being torn in so many directions.
I'm wishing you all the best with your results on Thursday and hoping your family is back together!
Mar 27, 2020 05:27AM Mudstick wrote:
Just a quick update and a request for advice. I hope everyone is coping well or at least getting by day to day.
My MO appointment scheduled for Tues March 31st to discuss treatment for my recurrence has been changed to a telephone call. I'm happy not to have to risk going to the hospital, but feel somewhat uneasy about the inability to read body language and facial expressions....
I wanted to ask those who have been through a recurrence and treatment previously...what would you recommend for questions to the MO?
I have a list compiled and just want to make sure there isn't anything I'm missing. My biggest uncertainty is whether chemo is warranted or not.....I'm HR + and I've evaluated the CALOR trial and have several issues with it and do not believe the results are applicable to my situation. I don't want chemo, but I'll certainly do it if there is any potential benefit.
Thanks in advance for you opinions and advice. I really appreciate it. My mind is swirling over and over about this situation!
Mar 27, 2020 06:38AM kbram wrote:
I had to have chemo for the sheer fact that it was a recurrence! My tumor was very, very small and removed thru surgery. In addition, I had radiation because I did not have it the first time around. My MO wanted to throw everything at it she could. Not easy a second time around, but I got thru it!
Mar 27, 2020 06:50AM Mudstick wrote:
Thanks kbram for your input. The CALOR trial was published in 2018, so I've heard many MO's are now treating HR+ve recurrences with endocrine therapy only. My RO's opinion was that my treatment would likely be a change from Tamoxifen to Ovarian Suppression + AI and did not believe chemo would be on the table at all..... I guess we shall see. I just don't want to miss an opportunity to hammer this.
Apr 6, 2020 08:28PM Prdanib wrote:
I’d like to Share my experience. I had a bilateral nipple sparing mastectomy with immediate DIEP Flap reconstruction for IDC in August 2017. In January 2020, I noticed a few lumps in my breast. Went to the doctor and learned it was a recurrence of IDC in my dermis. It was very close to where the primary tumor was. Just had surgery last week where I underwent a complete mastectomy, where they removed my nipple and affected skin. I also had 13 lymph nodes under my arm removed – three of them had cancer cells. This time I went to Sloan Kettering, and was told that some surgeons leave more breast tissue than others.So there you go. If you opt for a NSM or a SSM, do a lot of research on your doctors first. Also check the public records to see how many lawsuits have been filed against them.
Apr 6, 2020 08:35PM Prdanib wrote:
also, Mudstick, I had neo adjuvant chemo the first go around, AC+T My surgeon was very surprised to find cancer cells in my axilla because I had such aggressive chemo. However she noted that in HR positive breast cancer, chemo is not generally indicated. I would definitely look into it before going forward with the chemo and perhaps seek a second opinion. I know it’s stressful, but ask what the chanceof a complete response is in your case.
Apr 11, 2020 08:19AM Mudstick wrote:
Sorry for such the delay is replying and updating!
I heard from my MO after he brought my case to the tumour board and got the results of my Ki67 (which turned out to be 17.2%). He said the board was split 50:50 with respect to chemo, but the 2 senior experienced docs recommended chemo and in light of my age, early recurrence (15 months), higher than expected Ki67 and preference to do all that I can - he said he recommended 4 cycles of TC. I'm at peace with that. I feel the need to do as much as possible to prevent any future recurrence. I could not live with regret, if I ended up with a DM and chose not to do chemo.
So....I don't have a confirmed start date yet, but he suspected it would be sometime the week of April 20th or the following week (due to Easters impact creating 2 short day weeks).
Happy Easter to everyone. Hope you stay healthy and safe and get to relax with your family (while maintaining social distancing!!)
Apr 15, 2020 12:03PM Jmushay wrote:
Mudstick, I have almost the same diagnosis as you. I just had DMX on April 1. I have a positive margin for DCIS. I just met with my RO today who recommended I do 25 rounds of rads because of my age (41) and because it’s multi focal. He said we would go this route even if all my margins had been clear. I’m curious if they ever mentioned anything about treating you differently because of the multi focal?
Apr 16, 2020 07:28AM snowflake22 wrote:
I just had surgery for a local recurrence and I feel concerns about long term prognosis with such a short disease free interval, recurrence was less than a year after orginal surgery. My ct and bone scan showed no metastasis, still waiting to hear if anything was found in lymph node but mri did not show any involvement.
Kbram-do you feel more confident going forward having had the chemo?
Beesy-I'm 46, age 45 at orginal diagnosis...those are the types of research articles that are worrying me
I also had a low oncotype score (less than 3%) chance of recurrence so didn't have chemo or radiation. However I feel like now that we are getting out the 'big guns' I have some reassurance that will get it all this time.
Apr 16, 2020 08:01AM Beesie wrote:
snowflake, what were your surgical margins after your first surgery? If they were narrow, that goes a long way towards explaining the recurrence.
The Oncotype score suggests that your cancer was not aggressive, which means you have a low risk of mets. But the Oncotype score says nothing about local recurrence risk, and close margins are a significant factor when it comes to local recurrence.
Apr 16, 2020 08:17AM Mudstick wrote:
Jmushay - Sorry to hear about your diagnosis :-( I hope you are recovering well from your surgery! My RO (the first time) did not strongly recommend radiation. He was pretty "laissez faire" about it and thought it would only decrease my risk of recurrence 1-2%. He estimated my total risk of recurrence was only 5% with the positive DCIS margin.
Where is your positive margin? If it is a deep margin or near the chest wall, the recommendation might be stronger for radiation. Mine was a superficial/anterior (skin) margin. He pretty much left it up to me whether I wanted to pursue or not. I was not strongly convinced the benefit outweighed the risk at the time....I had a low Oncotype score of 14 and a 9% risk of DM at 9 years (with 5 years of Tamox). Obviously the tamoxifen didn't do its job though.
snowflake22 - I'm glad to hear your scans are clear, but sad that your recurred so quickly. From the numerous studies I read, time to recurrence seemed to definitely put a patient at a higher risk of future recurrences and poorer outcomes. Unfortunately, there are a lot of caveats to consider and although the outcomes look dire - most of those studies did not consider or separate the biology of the tumours. So often triple negative, HER+ and luminal types were all grouped together (we know biological sub-types have a significant impact on outcomes). Additionally, several of the studies are single institution, older (which impacts the efficacy of treatments) among other considerations. All that to say - our specific outcome may or may not be similar to the groups in these studies.
I was clear to my MO that I did not want to hold back any treatment that might help. There is a lack of good data about whether or not chemo is helpful for HR+ recurrences. I'm not willing to look back with regret, if I happen to recur in the future. It is a personal decision though :-)
Apr 16, 2020 10:03AM Cowgirl13 wrote:
Mudstick, I just wanted to share that I, too, did not want to live with regret and did all treatment that was recommended. I just couldn't image myself living with such grief. Best wishes for your treatment and hoping you will have peace of mind.