pectoral muscle recurrence- breast to muscle tissue
Hi there! Has anyone heard of breast cancer moving to the pectoral muscle? My doctors have never seen it happen, but here i am. I had a bmx 2.5 years ago at 40 years old. I had surgery only, no chemical treatment, since my cancer was said to be "small and favorable" (dcis, w small 4mm micro invasion of stage 1, er & pr + and her2 -). I have now just started tamoxifen, headed to radiation. Have had 3 recent surgeries on my right pectoral muscle after finding a lump on my implant attached to my pec muscle, and now have clear margins. PET, brain and bone scan normal. My doctors will present my case to a tumor board, they've never heard of such a thing. Has anyone else?
Comments
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thanks robo47! Have a great day
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I was just diagnosed last week with recurrence to pectoral muscle. Awaiting results of PET scan. I really don't know how to proceed. I'm affraid to have part of my m uscle removed, as I already have pain and limited use of my arm. I guess we will get through this together.
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Chantal10 and Lunalin, my cousin had recurrence to the pectoral muscle. Unfortunately she didn't go to the doctor until she had shortness of breath -- the tumor was impinging the lung.
In the end they did a fairly major operation. Took out the tumor then started the usual Stage IV treatments.
I hope that it goes much easier for both of you. Don't mean to scare you -- she had the worst case scenario.
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PET scan showed no mets. Have an appointment with new oncologist on Thursday and am looking for new surgeon. Such a waiting game.
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Pajim, Sorry to hear about your cousin. Do you know how long it had been between initial diagnosis and the pectoral muscle? Im curious.
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Lunalin, how are you tonight? Good news about your Pet scan! Will they also do a bone and brain scan for you?
what was your initial dx, and how long ago? The cancer i started with is er & pr positive and her negative. My sentinel node is negative. This secondary area is the same dx for hormone receptors. My scans are all clear except for this 1/2 cm in my pec, and now clear margins.
Have you had surgery already on this recurrence and that's how you know it's in pec muscle?
My onc presented my "interesting" (ha!) case to a tumor board yesterday, and also some expert breast specialist oncologists from the east coast of the US- and it was divided on whether I should do Tamoxifen (I already started it) and radiation... or tamoxifen, chemo and radiation. There has been no case study like mine to follow. The only study was done years ago now where a small group of women with breast cancer that moved to pecs were given chemo, but their hormone receptors were negative (unlike mine), and in the case of these women, the chemo was not helpful (i guess that means they died??? I didn't ask what that meant exactly, but that's what I gather).
It's basically up to me if I want to do chemo. wtf!? Otherwise, it's radiation. I'm on the calendar for Wednesday to start radiation. If I decide on chemo it needs to be decided quickly because chemo would be before the rads. I hate the idea of poisoning my entire body for a local recurrence, but how can anyone be sure there isn't free floating bastard cells hiding??
I guess we are trailblazers here!
I emailed my surgical oncologist the information I just mentioned and she said she was also going to present my case to experts at Cedar Sinai and UCLA. I really respect her and hope she can help me seal my fate for treatment. I need to make a decision.
This is a disaster.
Why do you want to change doctors? I just changed my oncologist and this is when all got turned around. I was set to do rads and then she said, wait and let me present your case, and now this chemo crap is on the table. At least she's taking my case seriously. I just want to run.
Where do you live? I am in Ventura County in California. Sometimes I wonder if where I live is making me sick. It's a nice area, but here is a sewage plant a few miles away, and i wonder if chemicals seep in my body. who knows. Could be anything and everything.
I am sorry you are dealing with this. Wish I could give you a hug.
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Have you had an onco test done on your tumor? It might help you and your doctor know if you might benefit from chemo. I had one and it indicated that I would benefit from it, so I did chemo. See if your insurance will cover it.
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I agree that they should do an oncodx test to get more info on chemo treatment also there is a new test on 150 genes I forgot what it is called. Www.knowyourcancer.com I think it is something like that. Don't do the chemo unless you have more info.
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Thanks ladies- Here's my oncotype dilemma. I had begged my oncologist 2 1/2 years ago to do my oncotype score and he just pushed me off on all occasions of my asking. This is in part why I have gotten this new oncologist- my old one didn't listen to me and i felt almost teased about my DCIS/stage 1 cancer and how it wasn't coming back, blah, blah... in light of what's happened with me, he has since said, i'm sorry, yes, you are unique... and I said, thanks, but good bye! Anyway, yesterday my new onc said she would help me get my oncotype score but wasn't sure my insurance would cover it because it only covers the test in the primary cancer location, that they might deny it because it's now technically metastatic. She said she would try and push it through considering I never had the test done before. She'll also check my out of pocket expense to see it that works. BUT, It also takes up to 2 weeks to get the score!! I am 4 weeks post surgery now. Everything has been wait, wait, wait, HURRY!!!!! It's awful. I found my lump in June and here we are trying to figure it out still. It's insanity.
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Hi Meow- I checked and that website link doesn't work, thanks though!
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I just wanted to give an update. I will start 3 months of chemo (4 rounds, every 3 weeks) and 7 weeks of rads to follow. Wish me luck and I hope this stupid cancer stays away. The medical director said no way to getting my oncotype and that I needed chemo. It was heavily suggested that i do chemo by many different expert opinions, so that's what I am going to do. I expect a less than pretty 6 months with the short term side effects, but I know I will come out on the other side like a champ!
Lunalin, good luck with your dx and if you ever want to talk, here I am.
Thanks ladies!Chantal
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Hi ladies, just saw this thread. I also had recurrence to pec muscle in axilla area 15 yes fifteen years after my original ILC diagnosis with MRM. I was living in Riverside county CA ended up with a wonderful onc surgeon at UCIrvine. UCI tumor board recommended neoadjuvant chemo then surgery then rads. Now I am on AI long term.
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Kareenie, how did you find out it had moved to your pecs after all that time, did it present itself as a lump or was it via a scan? Mine was a small, hard lump. Thanks for sharing your story.
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Chantal10,
Just wanted to encourage you. You will do fine with the chemo. Attitude is important, as you know. And you seem to have a very good attitude - love your snarky remarks about those bastard cancer cells! My thought is that sometimes - yes, sometimes - we have to be a unique case in order to serve others in some way, be they the onco docs (who need more experience in a wider range of cases, lest they become complacent), people in the infusion center (who may feel worse than us on a given day and are lifted by your spirit), women on this board (obviously), or our own friends and family who still don't get us. . .to use our "specialness" for the greater good. That, and of course, to be able to grow a new crop of hair! Who wouldn't want to do that, right?
I am here if you need a chemo hand to hold. I didn't try to keep my hair; I just told myself "ef it"... and fyi, the short and curlies down south dropped out first - a pain free Brazilian wax job! LOL
Be well Chantal10!
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Chantal, I wish you the best of luck. I'm sure it is a wise decision. I originally had a mastectomy followed by AC chemo 10 years ago. I did not have reconstruction.I had scar revision surgery 6 yrs. ago and no canscer at that time. MRI 15 months ago showed "scar tissue". Well 6 weeks ago while working out with 5 lb weights, I noticed a large lump in my outer chest. I thought it was a muscle contraction. It turned out to be a mass, confirmed on CT and ultrasound. I had core and needle biopsies in surgeons office which showed ILC 2cm in percoralis major muscle. This was confirmed on PET scan.
I didn't like the surgeon. He just seemed cold and very glib. My former oncologist moved out of state. I was very pleased with the one I saw today. I have an appt. tomorrow with a new breast surgeon to see "if it can be resected". It is already affecting my hand and arm on my dominant side. I guess I'll take it from there. If all goes well, I will have radiation and hormone therapy. I forgot to mention the 5 yrs of Aromasin.
I live in NJ and have access to many great hospitals and doctors. I am also quite a bit older than you, 62. I'm just sick of this. I thought I did all I could do 10 years ago.
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Thank you MerrellGirl for your for your support. I haven't been bald down there since I was 9 so that'll be weird, I always went for the "landing strip" so this will be a new look! tmi? haha!
Lunalin, I am glad your liked your oncologist today. I hope you get some positive news tomorrow with the ps!
My children are 7 and 5 years old. This is so unfair to them to have to deal with and see! I hope the take away from this is all long healthy life for me to be able to watch them grow. Please God. Please! xo
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Chantal, mine was a lump the size of an almond. You had to reach into armpit up under the muscle to feel it. I was trying to massage out what felt like a muscle spasm.
Lunalin, first "breast surgeon" I saw (really a general surgeon) said he couldn't resect it. I got several opinions and found a real breast onc surgeon at a university who recommended neoadjuvant chemo then surgery and rads.
BTW there was no breast tissue there nor was the cancer in a lymph node. It had invaded the muscle. Who know how the cancer got there. I sorta assume it got seeded there during my ALND. (My theory only.)
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Kareenie,
My husband's theory for my pectoral muscle recurrence is that the immediate reconstructive plastic surgery is what seeded these nasty cells. I had a bmx Jan 2012 and originally had a nipple sparing procedure but the margins under my right nipple was not good (showed DCIS), and at the same time of mastectomy my plastic surgeon inserted my expenders and instead of filling them gradually, he pumped the up almost to the max (to my surprise and agony!!!) so my pectoral and nipple were tightly smashed against each other for nearly 4 months (I was absolutely miserable with pain!) until I had another surgery in late March 2012 to remove my nipples and swap out the expanders for implants.
All my scans have come up clear so his theory could be true, and hopefully this cancer area has stayed in place and has since been entirely removed via surgeries this summer, but no one can be sure at this point, so chemo and rads it is.
sending love and hugs ladies! off to wake up the kids for school, TGIF!
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Kareenie, I was encouraged by your post, thank you.Saw the breast surgeon today and she thinks the tumor is much larger than reported, and growing. She recommends neoadjuvant chem, surgery to removed entire pectoral muscle, radiation and hormone therapy. I met with the plastic surgeon, who will also be part of the surgery. He said there won't be enough tissue to close the incision. I will probably have lat flap replacement. I feel overwhelmed!
Chantal, I had no reconstruction after mx and it still seeded itself. So don't second guess your decision.
It's so good to have someone to share this journey with. Thanks you and God bless.
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Hi Chantal10-----I am 45 yrs old and going to undergo chemo/XRT/hormonal blockade for a local recurrence: 7mm left chest wall mass, 8 axillary lymph nodes from the left side negative for cancer. I sought many opinions from onc docs and rad onc docs (because according to NCCN guidelines I need only XRT/hormonal blockade). But after much homework and 2 onc docs who advised adding chemo, I am going to go for everything, because I feel this recurrence in my case is not good (my oncotype score was 9, so in theory this recurrence should not be happening to me but it is). Hope you are doing well. I take the plunge this week. Am scared out of my mind, but the women on this board have been tremendously helpful and supportive.
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hi Crabbycamper, I wrote you a private message and the website said it was under heavy traffic, so not sure it went through. I was saying sorry about your recent diagnosis. It really sucks and I wish I knew why this cancer stuff has returned to us!! I have my 3rd round of chemo on Wednesday. I am bald and tired, but also overwhelmed by love and generosity of friends and family. It almost makes me feel guilty. It's weird for me to accept so much from others, yet i would be the first one to tell someone else that they deserve it. I hope you have support to get you through this time. I hope that this difficult bump in all our lives here on bc.org passes swiftly and with great success. This is not fun. Thank goodness for my xanax every night. ha!! xo
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Hi Chantal,
You've been on my mind. Hope you are doing well. They removed my pectoral muscle but didn't get it all. I'm currently in radiation and other than blisters and burns, doing well.
Hope you are too!
Linda {Lunalin}
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Hi Linda, how are you feeling today? They removed your pectoral muscle- ouch! Do you have friends and family helping you out? I hope so.
I finished chemo on 12/31 and am starting radiation on Monday. I am anxious about the rads but ready to get on with it. Are you doing 7 weeks of it? I am. What are you putting on our skin to help? I have implants from my reconstruction few years ago and i am hoping that they behave while in treatment.
I have terrible edema in my lower extremities from the chemo still. Did you have that type of swelling by chance? My feet slosh when I walk like I have soaking wet socks on! It is painful. My onc prescribed a diuretic but it doesn't seem much help. Hopefully in time it will change. Hurry up!
I miss my hair! Thank goodness I don't live where it's very cold, but even so, being bald is not very fun.
I start back on Tamoxifen next week. I have been on an low dose of Wellbutrin antidepressant for about a year and have been told to wean off it because Tamoxifen and Wellbutrin don't mix well... always something! I have elected to try and go without an antidepressant. We.ll see what happens. Hope I don't get too sad!
Nice to hear from you. I hope you continue onward and upward in your physical recovery and I hope emotionally you stay well, too. xo
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Hi Chantal! I am doing well. I actually have better mobility since they removed my pectoral muscle. Just completed 3 out of 7 weeks of radiation. It's not bad, just time consuming. My skin is itchy and sunburned. They recommended Aveeno and Aquaphor, but both made me itch. Now using Gold Bond Menthol and cortisone cream. It's hit or miss. I am taking Aromasin, Tamoxifen wasn't good for me.
I lost my hair too, the first time. Hated it!! However, it came back nice and is still my only saving grace, lol. Please keep in touch. You are in my thoughts.
{{HUGS}}
Linda
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Checking out this topic to look for symptoms. I'm almost 7 years out of IDC stage 1. rads only. I suddenly have a tender spot that is hard to ... locate. It feels like it's in the soft tissue on top of my ribs. Can't find it unless I press down (almost into my armpit) and then I can find tender spot only. No lump. Also hurts when I breathe in. I'll give another week, then call doc.
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Hi Carol, First, let me tell you that bc in the pectoral is extremely rare. Mine presented as a large lump, immediately after lifting a 5 lb weight! It was where my chest met my armpit. There was no pain, just a large lump. Please discuss your concerns with your Oncologist, but don't worry.
Linda
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I don't know much about this but sounds promising for treating chest wall recurrences:
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hi all
I had bilateral on 1/13 and tumor board met They had a split decision on whether to go back in and remove my pectoral muscle. Has anyone had their pec muscle removed and what effects had it had in you?
Thank you.
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I had my pectoral muscle removed on 11/3/14. My tumor was within
my muscle. Don't do it if not necessary! -
Hi
Just found this thread. I also had a recurrence in my pec muscle following a bilateral mastectomy. I had surgery 2 weeks ago - and just part of the muscle was removed. I'll be starting chemo next week.
I just wanted check in and see how everyone is doing.
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