Did you have reconstruction? Just wondering how you felt the second lump. I've been fearing since I had mastectomy and reconstruction I won't feel any lumps and it would spread to other areas before I'll realize it came back.
The radiation while yes clearly helpful can't take out every cancerous cell - please keep us updated on how you're feeling and can you share how you found the reoccurrence? Thanks so much xoxo
My dr said chemo would not work. Took ais for 4 years then she stopped it, wanted to continue but she said no cause I could have resistance. Took radiation. Now have extreme anxiety. Taking Luvox and thryoid and klonapin. Not happy with choices do lots of deep breathing
I’m sorry to hear that the blood work didn’t tip you off! Maybe not a match with original tumor dna? Will be thinking of you and good luck with PET—xoxo
My dr said chemo would not work. Took ais for 4 years then she stopped it, wanted to continue but she said no cause I could have resistance. Took radiation. Now have extreme anxiety. Taking Luvox and thryoid and klonapin. Not happy with choices do lots of deep breathing
@kathy88 don't know if this helps but my doctor explained that chemo works best with more fast growing tumors. My low Oncotype didn't just show that I didn't need chemo but that it would not work because of the characteristics of my tumor.
Also after 5 years of letrozole I had a Breast Cancer Index that said I was high risk but also said that there was no benefit from further aromatase inhibitor treatment. Would you feel better knowing that the AI was no longer helping, as the doctor said? The lab still has your specimens and the doctor could order the Breast Cancer Index-?
Did you have radiation early on or after 4 years>
Any chance the thyroid meds are contributing to anxiety? Or maybe a different med than Luvox? Klonopin is my friend too but I don't tolerate much and take 1/4 and only late at night, maybe a few times a month. I get it! Tai chi helps me a lot. And walking.
Sorry you are going through this. I am approaching my 10th anniversary of diagnosis and am feeling it too. Just because the anniversary is bringing cancer to my thoughts.
I had a double Mas. and BC has returned after a so called rogue cell in the arm pit area (all BC of left side) Radiation hasn't helped me. I had suspiciously confused technicians in '19 and '22 in Fl, then NC. they shuffled and fumbled around with starting machinery then changing position of it , I felt electric shocks leaving the Fl clinic. , then in NC the 2 techs were disagreeing in front of me once procedure started; stopping standing around me talking over me as I lay perfectly still hoping for a miracle . They said something about colors saying, "no I do the brown and the other said no I always just do yellow. And it was sort of some sort of shrug of the shoulders I guess I do not think I was positioned to look at them and they just walked away and started again. I'm burned to a crisp after a few month, have limited range of motion there and sunken missing tissue (which I guess is necrosis) If I was having a lumpectomy, I'd definitely say, PLEASE do very GOOD clear margins to help cut out more chances of rogue cells being left behind.
Thanks so much for sharing and sending hugs that you can heal and get PT for range of motion issues. How will they continue surveillance for you? PET, MRI - good luck! I'm in MA and am seen at Dana Farber - with lobular I didn't get great margins, 58 yrs old and almost 2 years out hoping to continue with alternating MRI's , Mammos for surveillance. I am hopeful that liquid biopsies can be used to match our blood draws to tumor markers to pick up any reoccurrences sooner that scans! xoxoxo
Gosh you have been thru the ever present challenges of BC… and I’m sorry you have had such issues to combat.
It seems I have a local recurrence and a PET will happen this week. I’m an anxious wreck. Even if the PET is clear it appears that AI did not stop a local recurrence (I had a mastectomy but no radiation which I now regret) . Doc is talking about Verzenio or Kisquali . Reading the side effects is alarming and I’m sorry you had a severe ulcerative effect.
Did you have other challenging side effects ? Any on Kisquali ?
May I ask how long after your mastectomy that your reoccurance was discovered? Did you have lobular or ductal. Please keep us posted as you embark on your plan and good luck with PET. xooxoxo
May I ask how long after your mastectomy that your reoccurance was discovered? Did you have lobular or ductal. Please keep us posted as you embark on your plan and good luck with PET. xooxoxo
PET was absolutely clean including nodes. Got results in a record 6 hours.
It’s 2.5 years since single mastectomy for IDC ER/PR+, HER2-, on Anastrozole basically since then.
This 4mm showed up 8 days ago , observed by me. A biopsy reveals ER + PR- ( HER2 not in yet) presumed to be - as KI is 3% ) which would support a negative but no guarantee).
It’s in the location of the original tumor so presumably a rogue cell that got away and just under the skin.
Plan presuming HER2- : I guess it’s a lumpectomy on a mastectomy? Switch AI to Examestane and radiation under consideration.
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I also had lobular and double mastectomy stage 1b. Wish i could feel better.
If you have dense breasts I would recommend asking for MRI 6 months after the mammo and especially if you had lobular cancer! Best of luck!
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1 ReactionThe radiation while yes clearly helpful can't take out every cancerous cell - please keep us updated on how you're feeling and can you share how you found the reoccurrence? Thanks so much xoxo
I had double mastectomy too. I just wish the sadness and anxiety would go away. I’m In remission I want to feel better not anxiety most of the time.
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1 ReactionI’m sorry to hear that the blood work didn’t tip you off! Maybe not a match with original tumor dna? Will be thinking of you and good luck with PET—xoxo
@kathy88 don't know if this helps but my doctor explained that chemo works best with more fast growing tumors. My low Oncotype didn't just show that I didn't need chemo but that it would not work because of the characteristics of my tumor.
Also after 5 years of letrozole I had a Breast Cancer Index that said I was high risk but also said that there was no benefit from further aromatase inhibitor treatment. Would you feel better knowing that the AI was no longer helping, as the doctor said? The lab still has your specimens and the doctor could order the Breast Cancer Index-?
Did you have radiation early on or after 4 years>
Any chance the thyroid meds are contributing to anxiety? Or maybe a different med than Luvox? Klonopin is my friend too but I don't tolerate much and take 1/4 and only late at night, maybe a few times a month. I get it! Tai chi helps me a lot. And walking.
Sorry you are going through this. I am approaching my 10th anniversary of diagnosis and am feeling it too. Just because the anniversary is bringing cancer to my thoughts.
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2 ReactionsI was told no since I had double mastectomy
Thanks so much for sharing and sending hugs that you can heal and get PT for range of motion issues. How will they continue surveillance for you? PET, MRI - good luck! I'm in MA and am seen at Dana Farber - with lobular I didn't get great margins, 58 yrs old and almost 2 years out hoping to continue with alternating MRI's , Mammos for surveillance. I am hopeful that liquid biopsies can be used to match our blood draws to tumor markers to pick up any reoccurrences sooner that scans! xoxoxo
May I ask how long after your mastectomy that your reoccurance was discovered? Did you have lobular or ductal. Please keep us posted as you embark on your plan and good luck with PET. xooxoxo
GREAT NEWS!
PET was absolutely clean including nodes. Got results in a record 6 hours.
It’s 2.5 years since single mastectomy for IDC ER/PR+, HER2-, on Anastrozole basically since then.
This 4mm showed up 8 days ago , observed by me. A biopsy reveals ER + PR- ( HER2 not in yet) presumed to be - as KI is 3% ) which would support a negative but no guarantee).
It’s in the location of the original tumor so presumably a rogue cell that got away and just under the skin.
Plan presuming HER2- : I guess it’s a lumpectomy on a mastectomy? Switch AI to Examestane and radiation under consideration.
I’m so relieved that this is a local recurrence.
This was not picked up on MRI in February.
Please SELF EXAM!
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