Local Recurrence Chime In
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Sorry in advance for long post but there are so few of us...here it goes. Oh and thank you mods but the survey people said too few of us replied and I got the boot!
I'm not sure how I haven't found this thread before and chimed in but here I am too!!! A local or regional recurrence survivor. NED after 2 yrs. (I've been called cured by a young RO and metastatic by a Gyn head, my nurse practitioner says they don't restage recurrences and another RO just shook her head and said "sorry" when she read my 2nd surgery report - I literally took a second attivan as she read the report)
I had a double mastectomy with two tumors in the left breast originally in 2012. Lymph node involvement was questionable because I didn't let them biopsy before neo adjunct chemo, (I was too worried about seeding which may or may not have caused my recurrence because I didn't do rads first time).
Reoccurrence a little after 3 1/2 years probably sooner when I was diagnosed with 10 out of 14 nodes unfortunately in axiliary lymph nodes. Nothing on CAT or bonescan tho they noted something small on liver ( too small to determine if anything, I only found it in detailed report) and 1 cm lung nodes that haven't changed from 2012 to one scan in 2016 and 2 scans in 2017.
My surgeon thought she got clear margins and I insisted on doing Taxotere (ACT first time no rads...false negative in 2 nodes at surgery). My surgeon did recommend rads first (one oncologist disagreed wanted xeloda first then rads), second opinion recommended Taxotere which dispite risk of permanent hair loss (I cold capped somewhat unsuccessfully but it all came back) I felt better because the Taxanes seemed to do more than AC portion first time. Also we did do radiation before chemo. I also had a complete hysterectomy simultaneously with ALND. They gave me a lot of control which was either because it didn't matter or they might have thought I was screwed anyway. !!!
Arimidex daily since. I used cold mits and gel booties and have some lower leg neuropathy but most begore I get moving for the day. Exercise really helps. I had a clean ultrasound in December after implant replacement for BAD capsular contacture after radiation. I am having another US done next week just because I can't tell if the contracture is trying to come back or if I have more swelling puffiness in the armpit area again. I should add that paddling on an innertube at an indoor water park seemed to strain things but its been almost 2 weeks. It kinda scares the crap out of me. But if it comes out clean I think I'm gonna go ahead and get nipple tattoos and not think about this crap till fall when I'll probably insist on another scan. If I don't have any symptoms they won't do another CAT scan for another year year and 1/2. Whoo hoo!
Stress with work has been awful along with dreary Ohio winter weather. Need to get back in shape and contracture be damned. Yard work and bike riding for me!
I just figured there have been a lot of women who are diagnosed stage three B and C from the get-go. And they are still alive and kicking years down the road. And I used to think that 25% five year mark for stage 4 was too slim to hope for but it seems like more and more women are becoming NED and stage 4 or they have inactive or stable disease. I'm just trying to kick the can down the road as far as I can hoping for better treatment options when it shows up again. Even my somewhat gloomy oncologist who is the head of his department and I still trust that he's very good ...once commented that we could kick the can permanently down the road. I love talk like that !!!
I REALLY don't enjoy being a pioneer. Had so hoped to be on of those stage one or two gals that put this in the rear view mirror. Instead its my copilot many days. I take as many damn vacations as I can, say what I mean and have had many talks with my now 8 1/2 yr old about my uncertain future without crying. Its life. Its precious and its not guaranteed for anyone. That makes it sweeter than ever.
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Hi everyone,
I am surprised that I haven't ever contributed to this conversation since I have been following it since it began.
I was diagnosed with a local recurrence right before Christmas, about 6 months after I completed treatment for my original diagnosis. I was diagnosed when I was pregnant, so my order of treatment was a bit off and I often wonder if that led to the recurrence. But I also seem to have really, really terrible luck with this cancer.
I had a mastectomy/tissue expanders on December 29th, ended up in emergency surgery for an infection afterwards. I started Cisplatin last week. I've already had radiation, so we haven't really considered that. I had a 2nd and third opinion and they were all over the place. Siteman said suggesting nothing but surgery and Research in Kansas City said throw everything at it: Carbo and Taxotere. My onc in St. Louis is very smart and thinks Cisplatin might be a good choice (she said so from the start) because it effects resting cells and I have no evidence of active disease (I took the Guardant 360 - not a perfect indicator but we use what we got, right?).
I agree that a recurrence is very heavy emotionally. The mastectomy was horrid, of course, but I am not as scared of treatment because I have done it before. I am scared of dying and leaving my 6 year old and 1 year old kids permanently damaged. I think part of the reason we aren't "staged" in a recurrence is because it doesn't matter anymore. Staging helps with treatment decisions and prognosis, that is all out the window now. People with recurrences are more likely to develop distance metastasis no matter any other factors. That doesn't mean there isn't hope, though. I know that.
Thank you for letting me join you all. It is a relief to know others going through this.
Annie
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Welcome, 7of9 and Annie. Definitely one of the hard things is the varying opinions that you get. I experienced the same thing with some doctors acting like you are doomed and others saying "I think you still have a good prognosis". I, of course, have that one burned in my memory, although he really didn't convince me at the time. As I get further out, I start to believe more, but never completely rid my mind of this. Somehow we have to find a way to live life to the fullest with that uncertainty in the background. 7of9, I'm with you on the "take as many vacations as we can!"
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Hi All,
I am just checking back into this convo, since I'd said a few things right around the time of my re-diagnosis, but not much else. As it turns out, my recurrence was limited to one lymph node after all. This was pretty encouraging. Also, after ALND in January, I've been on AC (I had TC previously), and I just finished that. I am moving on to taxol + carboplatin, because I'm BRCA1. Is anyone else on this thread? My SO said that BRCA1 mutation carriers have specific patterns of recurrence, in that they often recur locally, but go away over time. This is my hope! Just thought I would check if anyone else had heard this. In my case, my recurrence was er+ (5%), but my initial DCIS was TN. I don't know what that will mean for tamoxifen, and targeted therapies moving forward. It seems like things were so much more clear, and less complex, with the first one!
Anyhow, I wish you all the strength as you go through your various treatments. I am halfway through...
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I know everyone on this thread "gets it" as far as the emotional toll recurrence takes. I go on with life pretty well most days without BC getting in the way. I do get more anxious before each appointment lately, and I didn't a year ago. I'm not exactly sure why. Part of me is pretty superstitious. Last time, it was a few months after I switched from 3 month to 6 month appointments that I was diagnosed...you know...right after they said how "well" I was doing. I am pretty sure next week, they'll switch me to 6 month appointments. I also have the hand numbness which is getting worse, and ongoing shoulder pain. My gut is not sure it's cancer (and my gut has never been wrong), but my logical worrying brain, keeps wondering, "what if it is". Oh well. I'll cope this week the way I have all along .....with LONG walks down the bike trails.
I do have to say that the replacement of implants due to capsular contracture from rads gives me hope that someday I can do that too. My cancer side is rock hard...as hard as expanders; MO says he's never seen anything like it. PS says damage was so bad I'd never heal. I decided I'd deal with it in about 3 years, when I'll be 50, and hope to retire from my job as a firefighter/paramedic. We'll see!
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Thanks for the update, Eschindler! The “recurrence” has been soooo much harder for me emotionally than being diagnosed the first time around. But I am in a much better place now than I was a couple of months ago. Part of it, I think, is that I finished treatment (6 weeks of radiation + boosts) and that I won’t be getting chemo again (I had biopsy track seeding and not a recurrence, per say).
The other part is that I am meditating, doing yoga, and going to therapy. I feel that I’m in a much better place than I was a couple of months ago when I was re-diagnosed. I am concentrating on healing and trying to worry less about the future and about those things that I cannot control. It doesn’ always work, but I have more good days than bad ones, lately
Kbee, good luck with your doc’s appt next week. ❤️
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Kbee, Maybe you can ask for physical therapy? Could it be that your scar tissue might be causing your shoulder pain? My scar tissue from surgery has been “pulling” my hip upwards and it’s very painful. I am going back to physical therapy now that I finished radiation but before the recurrence I was in therapy for range of motion and they were working all the way from my pelvis to my shoulder to losen my hip/breast/underar .
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Hi Ladies,
First off 7of9, one doctor asked why I was doing a full treatment of radiation since she said that I was palliative,... with a local recurrence. I was shocked at the time, but I later learned that even many health professionals do not understand breast cancer. Hang in there. Annie, recurring is a neg prognostic factor, but as we are learning breast cancer does not seem to follow a specific pattern. It is so heterogeneous.
I agree with TwoHobbies, we have to try to make the most of our lives with/despite this uncertainty. Much Easier said than done for sure.
eschindler, txs for the update. Great to hear the cancer was limited to one node. So interesting about the brca1 recurring locally. I imagine there will be even more gene/info found as we learn more and more about breast cancer, and cancer in general. I hope the rest of your treatment goes well. Let us know.
Kbeee, I wish I could say just the right thing to make you feel less anxious about your upcoming appointment. I hope it goes well. You , like so many ladies have been an inspiration to me.
manuella, great to hear you are doing so much better. Interesting about the seeding. Thanks for the update.
I as well, am sleeping a bit better as time goes by. Sending much love to all of you for sharing and helping each other through this difficult journey.
Xoxo
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Thanks for the kind words. I am not sure why I am so anxious about this appointment. I am on a clinical trial for a new med for another month, so I think that may be upping my anxiety since it can be a side effect. I usually NEVER am anxious about these appointments. I love my MO; he's the best doc I've ever seen for anything! I think the similarities in time to my recurrence, the bone pain, and an area of thickness, which I know is just more scar tissue (but know they'll want to image) just has me irritated. I hate when BC, and it's scares, eat up my time and take my brain to places I'd rather it not go. Thankfully, I work a lot the rest of the week, so I won't think of it there. Days I'm off and have time to ponder are when my mind wanders!!! I know you gals "get it" though, and it is so nice to have a safe place to vent so I can not have to vent these to my family and burden them with worry.
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Christmascarol - Thank you for starting this thread and for all your insights.
Eschindler and Manuella - I'm glad you are both doing well under the circumstances, and that treatment is going smoothly!
KBeee - We do get it. I have slowly realized that I will probably always worry about BC on some level, but I try live fully in spite of the worry. Sometimes I'm more successful than others. I'm sending you positive vibes and I hope your upcoming appointment can be as anxiety-free as possible.
I am still awaiting my skin resection surgery. I got my MRI results today, and my pectoral muscle looks good, but there are some other suspicious areas under the skin we didn't know about before, and one suspicious lymph node. The skin mets on the other hand are very visible. I finished AC but it didn't affect my cancer much, so it looks like I'll be doing surgery, Xeloda, more radiation, and then OS and AIs. My last PET scan was still clear, so my hope (and my MO's hope) is that we can still fix this. Sometimes it's overwhelming and I feel like I can't do it all, but the alternative is that my cancer will keep growing and spreading, and I'm not ready to let that happen either! I'm hoping for the best for everyone
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KBeee, hoping all is OK. I know how you feel - I can be sailing along and one pain and I'm right down the slide to depression! I have a pain under my arm in the ribcage. MO says there's nothing there. Hope yours is nothing too.
Buttons, you can do this! Hit it with all you got!
Anyone who needs healing vibes, I go to youtube and do healing meditations and they work, hahahaha. Well for sure, they do calm me down in a panic situation, which I've had in the past, and they change my mindset.
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Hello!
Has anyone had chemo after local reoccurrence? I had double mastectomy and reconstruction with no radiation or chemo (ONCO score 11). Tried tamoxifen but couldn’t tolerate side effects. Local reoccurrence a year later (small, they say 4mm, but it’s not their body-ha) and had a lumpectomy. They Want radiation and hormone therapy (put me in menopause) but not sure I want that (I’m 38 with a 5.5yr old) so I have option of chemo. But I’m concerned with long term effects like neuropathy (I can tolerate short term stuff-no prob). Having a hard time deciding.
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Jarkwright, it is certainly your own decision, and not always an easy one. I recommend getting an opinion from an NCI designated cancer center, if you haven't already, so you can make the most informed decision possible. See: https://www.cancer.gov/research/nci-role/cancer-centers/find
After a local recurrence the stakes are higher, and it's really important to treat the cancer adequately so you aren't dealing with a distant recurrence later. Your situation is interesting because your Oncotype was low, but you are also young (like me), and that is concerning. Did they recheck your Oncotype after the recurrence? Did they recheck your ER/PR and Her2 status? Sometimes those things can change.
I did chemo both before and after my local recurrence, but I had a high Oncotype so it was the obvious choice. I've done a lot of chemo and have not had any major lasting problems from it - yet. Personally I found hormone medicine and being put into menopause MUCH easier than chemo.
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Jarkwright, no chemo for me, but I had rads and now almost one year of an ai. Buttonsmachine did a great job summarizing some of the most important questions that will lead to answers that impact your decision on treatment. Plus, as she pointed out, a second opinion if the treatment path is not clear may be helpful. This is such a difficult time, but you are not alone and there are a number of ladies who are doing well years outsecond time around. Xo
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I have had a loco-regional recurrence, a couple of positive infraclavicular lymph nodes, but it was after 20 years, and my onc says it is Stage IV. I still don't understand why a regional recurrence is Stage IV, and I have tried desperately to get a second opinion, but have been turned down by two cancer hospitals in Ontario, they are too busy to give a second opinion. I'm having problems getting a second opinion from a hospital in the U.S. because they want the pathology slides and so far my hospital will not release them to me. It is a mess. I am very disheartened. Now I have to go to a government Health Ombudsman to try to get assistance releasing my slides, and help for the second opinion, and God only knows how long that will take.
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@Amica i also had loco-regional reccurance in June 2018 with opposite lymph nodes metsastasis via lymphatic spread...according to all recent studies its not stage 4 and is curable despite of very bad prognosis...my SO and MO both told me that in some countries doctors consider it stage 4...but we think its stage 3 and we will treat you with curative intent...i think same is the case with you...i have researched alot about stages and if its not in your distant organ thn its not stage 4...you should discuss it with your doc i think she should not tell you that you are stage 4...may be in a country you are they consider it stage 4..
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Sunshine89 - thank you for writing. Yes my oncologist is not treating me with curative intent, but with endocrine therapy and targeted therapy for Stage IV. She insists that it is technically Stage IV, because even though it is a loco-regional recurrent breast cancer she says because it has come back after 20 years, the concern is that there could still be a lot more cancer cells floating around elsewhere, not just local. I have questioned her so much that she said I should look at getting another oncologist so I can't keep questioning her diagnosis.
However, I am still trying hard to get a second opinion even if it is in another country like the USA, because I too thought Stage IV meant distant metastases. But in Canada my disease is being staged as Stage IV
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Oh Amica please please do something to change your treatment plan...how could she imagine herself that there will be other cancer cells if your have clear CT/PET scan...?? and if there are any cancer cells you should do chemotherapy to get rid of them...OMG i just read on google that if cancer is only in infraclavicar nodes thn it should be stage 3...is your nodes operable? if i were you i would anything to get 2nd option and to change treatment plan
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Amica, I hate the fear and horror you're going through after such a long time out from your first DX and treatment. It looks like you finished your AI IN 2010. Am I right in supposing you haven't taken Aromatase Inhibitors since 2010. For several years now in the states there's research that we may need those pills beyond 10 years for HR+. I'm metastatic/stage 4. My treatment is back on letrozole in conjunction with kisqali. The letrozole will help to control the disease weather you're Stage 3 or 4. If they insist on 4 then ask them about ibrance or kisqali (can't remember all of the first line treatments) Sunshine mentioned a Ct/pet scan. Is that how it was detected. I feel I'm being so invasive of your person but my heart hurts for you and so wish I could help. Please breathe and continue to seek answers until you can move forward. There is hope, there is treatment, there is new targeted therapy that yields results. I want bore you with my improvements but you can move beyond this shock. Hugs and Peace rule in your heart and mind. Jo0
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Sunshine89 - thank you for your concern and compassion. I haven't had the PET scan yet, I have it next week, so all information is not in yet.
Today I met with a radiological oncologist who explained it is diagnosed as Stage IV because of time and location: According to her these nodes behind my pectoral muscles do not receive lymph drainage from the breast, so the docs believe my cancer metastasized to these lymph nodes through my blood, and there is the risk it has been circulating in my system for decades. Even though these nodes are not that far from my initial breast cancer site, they are considered distant metastases.
The surgeons are not willing to operate.
She said they don't want to do chemo now because they want to save it for when/if there is progression. They do not want to use up that option now.
So I feel a little more at ease with what they are saying.
But I am still trying to get a second opinion too.
I hope you are doing OK, are you in the middle of chemo yourself?
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JoE777 - thank you for your support, I wonder when that research was published showing that additional treatment with endocrine therapy beyond 10 years might be beneficial.
But in any case I have been on Letrozole for a month, and will be adding Ibrance next week. So same as your regime, only a different targeted therapy medication.
It is a long story how the recurrence was discovered, but it came down to me finally noticing a swelling below my collarbone in June. An ultrasound was done, and then a biopsy. And I've had CT scan, bone scan, MRI of brain and this week PET-CT.
JoE777, I would very much like to hear how you are doing on the Kisqali/Femara regime. I hope you are doing well on it. Any side effects? I don't feel that great even on just the Letrozole, so I'm wondering what it will be like. I guess I'll know soon
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Amica, I've read so much since my metastatic DX I'm not sure where. Most research news has been this site, MD Anderson. I've been surprised that many women only take AIsfor five years. I'll try to retrace some of my old tracks. This is new because so many of us are living beyond 10 and 15years. I'm much improved from February. I really thought I was dying. I really went down quickly. The mets in my back and the hypercalcimia from the tumors put me down. I was put immediately on steroids to deal with inflammation and stop lose of bladder and bowel function then zometo infusions.Radiation to the back relieved the horrible pain. I always had terrible SE on letrozole but I didn't even notice this time because of the disease. The kisqali has had roughSE but my tumors are greatly reduced. Nodules in both lungs are reduced and two are gone. I can walk pretty good and can even play pool with my husband. SE-occasionally depressed and have intermittent anxiety, back ache with all three of my meds, hair thinning, insomnia, loss of appetite, flashes but not like at the beginning. As I've improved sides don't seem as bad. try not to let my info discourage you in your new treatment plan. HR+ does respond well when metastatic. My onc talks about years, and new meds if I needed to change. Hang in there. Let me know how things go. Hugs and Peace.
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Dear Amica, best of luck for your PET/CT. i hope you will get clear scan. I think your RO and MO are staging you 4 more because of time may be, the thing about drainage seems promising but again i have read that mets to infracravical nodes are considered to be stage 3. i know someone with such diagnosis (not recurrence) and she was getting radiotherapy for those nodes...of not surgery cant you get radiotherapy on that area to kill present disease?
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i am doing chemo for second time (AC+T) my PET scan and other all scans were clear ...so doctors are treating it aggressively. I wish to get rid of it completely this time.
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Amica - I had spread to my infraclavicular nodes and was diagnosed stage 3C. It was not recurrence but initial diagnosis. They removed all three levels of nodes in my Axillary and infraclavicular area with my initial mastectomy and then radiated the area after chemo. It is now just over two years later and so far so good but with very high risk of recurrence. Try not to worry too much about what they are calling it and just hope that the treatment is successful
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xxyzed
My onc actually said that: that if the infraclavicular lymph nodes had been found to be positive at the time they found the initial breast tumor, then it would have been IIIc---so it must be the 20 year recurrence. It's true, it is better to not worry so much about what they are calling it, I just hope they are treating it appropriately. They think they are, and I really don't have any other options. In Ontario, so far, my efforts to transfer to another Cancer Center have been unsuccessful--I was turned down because I don't live in the right "catchment" area. I can't move to get to a better center, it's just not feasible, so it is what it is.
I hope you are doing well.
Amica
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Well another ultrasound and doctor says no sign of recurrence anywhere around in my armpit by the cluster f--- of lymph nodes I had out 2 1/2+ years ago....looks like rads zapped the leftovers. While I still can't make out much from ultrasounds - sure looks like a hot mess of scar tissue. Even the doctor admitted that scar tissue is good at hiding cancer cells/malignancies. She didn't see any though the first time I was brave enough to look and ask she was turning on and off the color radar thingie that showed some red, some blue and some yellow spots. Supposedly blood flow. I thought for sure it was tumors - she said no, just veins and stuff I guess. She did encourage me to keep coming back and really didn't answer what / why don't they recommend and MRI or CT to be sure. Took one and a half attivan and the rest of the day was a little foggy happiness. Treated myself to lunch at CheeseCake Factory, blew $450 shopping - some Christmas gifts, bday gifts, some household stuff. Figured I will be here a while longer to work off my debt ...eventually. Have a great evening...
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Dear 7of9, i am so sorry you are feeling that way. you seemed to be very positive person. I am in same boat every little pain and scar make me worried. if you are not satisfied with US you should go for MRI for just peace of mind. If i were yoh i would trust on my doctor they are qualified and they know your history. if there were something suspicious they will not take time to oder more screenings.
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Dear Amica, i hope you will get rid of this cery soon. and you will be cancer free for sure ...keep us posted about your PET results. You are in my prayers.
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thanks Sunshine89
I hope your chemotherapy is going OK!
sending you peace & love,
Amica
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