Thanks for your long detailed post. It sounds like there is a lot of things going on for you at the moment. Breast cancer treatments and healthcare services vary so much in different countries and the healthcare system is very different in the USA. The information we offer is specific to what is currently available in the UK. You might find this link helpful in finding a cancer organisation in your country.
Finding out your breast cancer has spread and living with stage 4 breast cancer can be difficult.
The treatments for stage 4 breast cancer can include a number of treatments. When making decisions about how best to treat you, your oncologist will consider factors such as: where the secondary breast cancer is in the body, any symptoms you have, what treatment you have had in the past and your general health.
Having information about what’s happening to you can be a helpful way of regaining some control and help you cope, so it’s important your oncologist answers your questions as far as is possible including the plan for how best to treat and monitor your condition.
As you mention, some women with breast implants have been found to have a rare type of cancer called Breast Implant Associated-Anaplastic Large Cell Lymphoma (BIA-ALCL) The most common symptom for BIA-ALCL is a seroma (a collection of fluid) that forms between the breast implant and the capsule at least six months after the breast implant surgery. Most cases have happened years after surgery. You may want to post elsewhere on this Forum to see if someone else has been diagnosed with BIA-ALCL.
You may want to call the American Cancer Society’s national helpline for further support.
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My purpose for this post is to hopefully be able to talk to someone about the symptoms and process I would need to go through in order to either be diagnosed or dismiss the idea of BIA-ALCL. It’s as if I’m living, (AGAIN) with the PTSD fear of cancer recurrence that I had after first cancer diagnoses.
HERES MY INFO CONCERNING THIS TOPIC:
I live in the USA and we have recently been informed of the breast implant recall. I originally had reconstruction along with double mastectomies back in 2010-2011 and then replaced the initial implants during ongoing reconstruction in 2014. Long story— short: after labeled NED in 2012, I was diagnosed in August 2017 with stage 4 breast cancer with extensive bone Mets. About a month prior to that diagnosis, I woke up with a swollen lymph node behind my ear one morning and also for the year - 2 years leading up to it, I had a pain in the neck that was persistent and had rationalized it as needing a new mattress or pillow, etc. (as my Medicare health insurance was dropped because of my one year, failed attempt to return to my pre-cancer-occupation) and this insurance status, I happened to be made aware of while sitting in the neurologist office hoping and waiting to be examined with MRI. Needless to say, I was unable to be seen by the doctor because insurance was no longer active. My symptoms persisted, and as the story of my breast cancer experience would have it— diagnosis was delayed. When I finally was diagnosed with stage 4, I inquired with the nurse about biopsy to confirm that it was indeed breast cancer and she assured me that it wasn’t necessary as it was a 99.99+% chance that it was in fact breast cancer. In 2018, I began seeing a different oncologist and within our initial meeting, I requested for this new cancer to be biopsied because I had learned through research that the morphology can change resulting in her2 + to change to her2- for example. And if that happened to be the case, then I would think that the treatment plan itself may possibly be different as well. However, because the genealogy dept was booked up at the time, I didn’t get to have my request fulfilled- and to this day, (a year and 1/2 later) have yet to be re-biopsied and continue with initial treatment regime. I can’t complain with the treatment choice, seeing how many of the areas seem stable, yet other areas are showing progression.
Back to the breast implant recall/BIA-ALCL (and I’m so sorry for the lengthy post! Please forgive me):
After the national news report alerting patients of the breast implant recall, i contacted my plastic surgeon office for exact information concerning my implants, my nurse recommended for me to call the Allergen company and get the info from them and they informed me that my implants were among those in question however they do not recommend removal of the implants while the case is still under investigation unless I'm
personally experiencing symptoms. (Yet, it appears that you gals in the U.K. have been aware of this at least for the past year? And I’m curious as to why everyone in every country would not be made aware at the same time and to now say some stupid BS like, ‘while the case is still under investigation...’?)
The problem for me is that before having knowledge of the recall, I over-looked a lot of breast symptoms as something that merely goes with the territory of having had undergone as much surgery and treatment to my breast area as I have had. But now being made aware of signs and symptoms to watch for, I could possibly have side-effects and/or symptoms. And one of the major red flags for me is that the cancer that’s in my neck shows up on my scans as being in the marrow spaces. And through researching I’ve learned that lymphoma commonly metastasizes to the neck area and also I understand that being a blood cancer, would make sense for it to be in the marrow spaces. This appears to be the only area in which it’s viewed as being in the marrow spaces. My Mets are in several spots in my skull, throughout Cervical, throughout thoracic, throughout lumbar, both hips, femur and now watching spot in my lung that has doubled in size throughout the past year, but because it’s only 10mm, and although it’s accompanied by spotted areas of hyperactivity, my dr isn’t too concerned. The Onc first told me that there was a chance that it could be scar tissue, (obviously not thinking about the fact that it had grown) but then after I read the radiologist report for myself, and realized it had grown, I contacted the nurse and requested for someone to go over my scans with me to clear up a lot of questions. During that visit, she said that most likely it IS Mets in my lung but because of the small size of it, she’s not too concerned at this time. My concern with this is that again, I’m diagnosed with Mets to bones ONLY and that is how I'm
being treated and if my current treatment plan is not preventing Mets from growing in my lungs, then I'm
not sure if this is the best treatment plan for me? There’s also an area in my head that’s being watched as there was an initial scare that it had grown into the fluid surrounding my brain but then follow-up scan showed that it’s confined to the skull, but continues to show progression in each scan. I mention these things because I read that it’s rare for breast cancer to metastasize the the Cervical spine and to the skull but it’s not uncommon for lymphoma to be in the neck and skull. If the areas of progression are of a different nature, such as lymphoma, then perhaps a diagnosis and treatment would/could save me some time and unnecessary pain. LASTLY, to sum up my rambling post— because I had a brother whom died of lymphoma as a child (at the age of 8), I’m automatically at a greater risk of developing the disease than most. And I know that BIA-ALCL is a different entity than what my brother died from but I DONT know that my risks before having the implants do not increase my risks along with the implants. My entire breast cancer experience has taught me to follow my suspicions and internal signs concerning my health because even when I go to the drs concerning them- it’s always at least a year to two later before there’s enough outward evidence for the doctors to take action. And each time, that’s a year or two of the stress that comes with DAILY being aware of something being off, knowing I’m at risk of cancer recurrence and no one whose capable of doing anything about it, is actually able to do anything about it. The effects of THAT added, persistent stress from concern can not be removed when the area of concern is finally removed or treated. So now I gather as much info as I can to present Along with my concern in order to avoid being put off or overlooked, when possible.
Please if anyone has any info to help me with this present concern of mine, please contact me. Again, I apologize for the length and TMI, but thank you so much for any and all who endured till the end!! hugs to you all amazing warrior women!! Keep warring and keep roaring!! 🙃