Recurrence after DCIS - Pectoral Muscle
I first want to tip my hat to everyone on here as we help each other in this journey.
I had a lumpectomy in mid 2009 for DCIS, HER2 Positive. Started getting pain in a new area of the same breast but nothing found on physical exam and my heterogeneously dense breast show no new mass. I have pain at the surgical site since then.
A new area of the same breast started feeling tender a couple years ago. Mammo done, ultrasound with no new findings but Dr. wanted recheck every six months. Last December, the ultrasound check said they saw "something" but it was down too far and recommended and MRI. Findings were "significant" changes at the lumpectomy site and chalked it up to scar tissue changes. This is not the new area that has been bothering me for a couple of years. Re-check in six months which brings us to today.
In August, the MRI showed 1 cm lesion on the pectoral muscle and a PET/CT Scan was ordered. Showed up for it and the facility said pay $1200 or we're not doing it. The insurance company gave them incorrect info about the co-pay so I was forced to reschedule it until Oct 3. My Dr.'s office is very indifferent and has not been helpful at all with getting authorizations, etc...
The pain in the new area of the breast has been getting progressively worse and the Dr's just keep saying it's your scar tissue (even though that's not where the new pain is)
My questions are:
1. Does it sound right that my scar tissue changed after 7 years?
2. Could they be missing something going on in the breast because they are heterogeneously dense?
3. Since the lesion is in the area that I had radiation, does it seem realistic that this could be a recurrence, just in the pectoral muscle?
4. Has anyone else been diagnosed with a similar finding?
5. Has anyone been diagnosed with a lesion JUST in the pectoral muscle with no findings in the breast itself?
6. Due to the apathy of the current surgeon and his office staff, should I be seeking out a second option or have someone else look at the Mammo's, MRI's and ultrasounds to be sure nothing is missed. I have been diagnosed with Spondylosis (unrelated to the cancer) and they missed that on the X-ray. Makes me question everything. Our medical community is over-worked, I am sure it is easy to miss things. I am an hour away from Moffitt Cancer Center.
7. If it is a new cancer, is it likely a mastectomy will be done this time?
I don't see a lot online about pectoral muscle involvement unless it involves the breast as well. Any guidance will be appreciated. By the time I get the PET/CT, six weeks will have passed from the MRI...totally unnecessary wait!
Thank you for listening and sorry for the long post.
Comments
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Hi visualsplash:
I don't know the answers to your questions. Given your reservations about your current team, and that the interpretation of imaging involves some exercise of judgment, please do not hesitate to seek a second opinion. You mentioned Moffitt Cancer Center is nearby. If that is the one in Tampa, it is an NCI-designated cancer center and may be an excellent choice. Be sure to confirm insurance coverage and in-network status.
NCI-designated cancer centers: https://www.cancer.gov/research/nci-role/cancer-centers/find
Best,
BarredOwl
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I was 8 years out of a mastectomy and 8 chemo sessions when I felt a pain on the mastectomy side. I thought I pulled a muscle doing yardwork. They did an MRI without contrast and everything was good. The pain continued and a few weeks later after more doctor appointments it was discovered that the cancer had returned and the tumor was resting on a nerve...thus the pain. If they and done the MRI with contrast, the tumor would have lit up like a lightbulb. I was told there was a 1-2% of recurrence at the site after a mastectomy. Trust your gut! Stay vigilant. Prayers.
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Sherrybabee-
We're so sorry you find yourself down this road again! But your advice is spot on, and we appreciate you sharing your story!
The Mods
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Thank you BarredOwl for your message...I hear great things about Moffitt and if I have to do this journey again, that option is def worth checking out. I appreciate the link....
Always,
Visualsplash
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Thank you Sherrybabee for sharing your story...I, too am sorry you have to go through this journey again.
I will definitely stay on top of it...I can't even put a bra on or off without pain...something is definitely not right. The same year as my breast cancer, I also had a cancer on my eyelid...mohs surgery and reconstruction...and yes, only happens in 1% of the skin cancer cases...If the PET/CT comes back, my gut tells me to get another team. Hang in there for all second timers...we are stronger than this bump in the road.
regards,
Visualsplash
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Visualsplash,
I second the recommendation to go to Moffitt. I can not say enough about this exceptional hospital. My Breast surgeon was Dr. John Kiluk. I swear I'd give him a kidney...he was absolutely the best. God Bless.
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