Cancer in scar after double mastectomy; what now?
Comments
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Thanks Jamie. Did this start with a lumpectomy? I had to go straight for the mastectomy due to the fact that I was multi focal. Which makes me think, there were really about 3 tumors, so I guess I wouldn't be surprised if something was left floating around. I have been taking my tamoxifen as directed, but I guess sometimes that doesn't even make a difference.
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I had a primary tumor and two spots that were precancerous. Due to my medical history of lymphoma, my doctors recommended BMX. I took tamoxifen for 6 years! Not sure if it helped. The new tumor type (er+,pr-) is not responsive to Tamoxifen
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This cancer loves to throw curve balls!
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It sure does!
Have you been able to get an appointment with your doctor? I hope that the lump turns out to be benign
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I had a call in yesterday, still have heard nothing, will be calling this AM for sure. They are not too good about hurrying to get anyone in there, and the BS is always busy, unfortunately.
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Jamie, My oncotype was 16 too. When do you start chemo. I hope it goes as well for you as it has for me. I have just 4 Taxol left! I did 4 AC and 8 Taxol already. Then onto rads.
Frostecat, I had the lump removed nad then further excision where they made sure there were very wide margins. They took some of the pec muscle, but my implant stayed since the tumor was between the pec muscle and skin. A second tumor was found hanging out in the soft tissuea bout an inch away from the impland towards the axilla, so they took that with wide margins and a whole bunch of lymph nodes too. Other than a couple extra scars, I look really good still. Not sure I'll be able to say that after rads though!
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Welcome Frostecat and Jamie. Frostecat my recurrence was removed via a "wide local excision". You can't even see anything different except for the incision scar. It's completely smooth. And I also took my tamoxifen every day. I know one time I took it about 6 hours late and that's it and I still recurred. Then I read about 30% of women fail tamoxifen, which is really high I think. If you do have an ER+tumor, they will want you in menopause, surgically or medically, and they'll switch you to an AI.
I have a tissue reconstruction and there is no visible change after radiation, but I think you can have some problems with implants.
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My appointment is for Friday in the AM so hopefully I will learn a little more then. But we all know how it goes, wait for this wait for that, which to me is the hardest part. They wanted to wait until next week to get me in, but I told her I can't handle the waiting, so Friday it is.
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Whew - all clear! It was fat necrosis. She stuck a need in it and it collapsed (which is a good sign), and showed me the "melted butter" look of it in the needle. Wow, something like that just takes you right back in that dark place, no matter how many times you try to talk yourself down from it. I can breathe now.
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BEST NEWS EVER!!!!😊
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So happy for you Frostecat.
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Hreat news
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I was never so happy to have fat in my life!
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Phew, Frostecat. I hate that you had to go through all that worry for fat necrosis, but at least you have relief now!
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Hi KBeee-
Just found out that I will start chemo on Wednesday. I am glad to hear that you are doing so well on Taxol and AC. I am scheduled for 4 cyes if TC since I wasn't treated with chemo the first time around. I plan to follow your example and be active.
Hope you are well!
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I am still going very well. There's s new thread in the chemo forums about exercise... Hop on board! There also is an active thread specific to TC which was very helpful to me in 2013. I try to remember every day that chemo is my ally, not the enemy. Cancer is the enemy. I have just 3 Taxols left and I still feel great !!
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That's great to hear! I find your posts so encouraging and upbeat. I will check out the TC and activity threads.
Thanks!
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hey everyone. I had a 3 month check up with my Onc and she found a small marble like 'thing' in the cancer breast and I have an ultrasound scheduled for Friday morning. Almost eactly 2 yrs since my BMX. She says it is probably fat....but it has just popped up very recently and it on top of my expander, almost exactly where my cancer was. I am panicking. I had a HORRIFIC time with dose dense chemo and I had 32 radiation treatments. I won't do chemo again and I can't have radiation...I feel pretty doomed right now :-(
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oh no. I will keep you in my prayers. Why don't they just biopsy it? Mine was in the same spot as my original tumor and they were "sure" it was scar tissue. I told them I wanted it out and wanted to know 100%. Glad I did.
Please keep us posted. (((Hugs))) waiting sucks. Cancer sucks
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i am unfortunately joining the band wagon. I had a bilateral mastectomy with saline implants 3 yrs ago. At that time I had an oncotype score of 16 so no chemo. Been taking tamoxifen for 3 yrs! In July found a small lump which is IDC. I have a clear CT scan and bone scan. The BS is sure the tumor is at the original biopsy scar. The MO and BS say it is a local recurrence, but it is still scary. I choose a BMx so I would only have to do treatment once. I will have surgery to excise the tumor and than radiation and the MO will decide about chemo once she has the final pathology report. This group is showing me this happens more often than I expected. Thanks for starting the group.
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Yours sounds just like mine, but I recurred a bit sooner. My MO was not planing to do chemo until I insisted on Oncotype. It came back sky high. I just finished chemo last week and start radiation next week. I am sorry you are facing this again.
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KBReee congrats on being finished with chemo and stay strong for radiation. Did you have the oncotype testing with the first occurrence? Thanks for telling your story
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1st time my Oncotype was 16. This time the less aggressive of my 2 tumors was 40. The other had a Ki67 twice as high; they did not do Oncotype on that because chemo was already a given. Second time around it was PR negstive( first time was positive). Apparently progesterone loss in a recurrence is a sign it is more aggressive
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my local recurrence is ER + 80% and PR + 50% and Her2 -. I am not sure about the k67 level. My MO said she would decide about chemo after she gets the final pathology.It sounds like most people with a local recurrence have chemo. I wonder if they will do another Oncotype on the tumor? I wish you all the best and a quick return of your strength and energy.
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I had to push hard to have the Oncotype done. Since I failed on Tamoxifen, I did not want to put all of my eggs in one basket and assume the AI would work.
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May be joining this club. Was back for follow up 2 years after finishing treatment. Had a chest CT for another issue on my right side, but they found something outside of my implant on the left side. Did find something on the right rib where I was having pain. Also saw a shadow top of pancreas, and something on left ankle. Also BR 27.29 tumor marker was increased.
Having a PET on Thursday. Yikes. I think my signature still has all my hx. Basically right lumpectomy in 2008 with chemo and rads, left side issue in 2012 with mastectomy/reconstruction, chemo through June of 2013, right side TE infection in Jan 2013. took it out. Tried last summer to put TE back and used hyperbaric for better success. Infection, skin issue where original rads were. Took it out in Oct 14.
Cannot believe I am even back on the list serve looking for this....but glad to see others. I hope everyone has a good weekend and recoveries from surgeries.
I am a professor/AD so plenty to keep me busy until I get results.
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Sharon, Sorry you are dealing with this stress. I hope the PET is clear. Keep us posted.
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SharonS, sorry to hear of your concerning medical tests results. Sending good thoughts to you. Hope you have fun things to distract you as you wait for the PET scan so you don't have time to worry. Feel free to bring your concerns here, everyone is a great listener
I am having a lumpectomy on Monday for a local recurrence and am anxious to get treatment started !
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Doingwhatihavetodo - Thank you and good luck with the lumpectomy and treatment plan.
KBee - Thank you
I found great advice and comfort on these boards through my two cancers and treatments.
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Hope you are doing well Doingwhatihaveto and have a treatment plan soon.
My onc won't have the final read in the lump until Tues bc of holiday, but she did say no METS. That is something good.
If the tumor is cancer I am going to have the implant removed too. Since the right implant failed three times I really hate the whole lopsided thing. I was always small and would just prefer to go with nothing sometimes
Appointment is Tues at 10. A little more waiting.
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