Was just recommended to see a GYN/Oncologist to discuss having my ovaries removed.. I have the BRIP1 gene mutation.
So was there for 2 hours .. very thorough but after giving my whole family history of cancer on both sides (mom n Dad) it went from ovarian surgery to possible hysterectomy to cancer staging n I am a pure wreck n was by myself n was just lost for words or questions to ask such as “Can’t I just be followed every 6 months with transvaginal ultrasounds? N blood work
I am seeing my oncologist this week so I now have more questions after reading the surgeons notes starting at after this surgery may patient May need other procedures such as bladder surgery etc
I am 68 n doing very well on my current meds which shrunk my lung nodules . Just had PET scan n no signs of metastasis n a very crazy scary sentence in report that was typed
NO OBVIOUS EVIDENCE OF CANCER To Be Seen on this scan. N patient should have a mammogram which I was told will never need one .
Does anyone else have this gene mutation n what were you advised to do
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Dancing
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Dancing, adding to my other note that I sent you privately, I meant to say that the problem with the vaginal ultrasounds, as a way to track any disease in that area of the abdominal cavity, is that it can still very easily miss stuff until it is quite progressed. Which is why they may have suggested a more radical surgery than you were expecting to hear. Though it is also very odd the suggestion about your bladder if your PET looks clear in that area. Sounds like you definitely need to follow-up with your regular onc of why that would have even been mentioned! Try to stay calm though, and get the facts straight first. And remember, YOU choose what you get done. A second opinion from another gyn/onc is probably wise too. Nothing needs to be rushed in this situation. Hope your onc provides good clarity!
Hi Dancing🙋So as far as the total hysterectomy part. First I dont have that mutation Brip1! But I was 60 when i was officially diagnosed with BC. So i had a mastectomy and axillary disection done left side along with radiation this all took place between march and august of that year and my scans where clear. October i had my yearly gynocology appt. and my doc said he highly reccomends i have a hysterectomy spouted off all these scientific numbers of higher chance for mbc if i didnt. I asked if i could think about it and let him know next year as i Just wasnt ready to have more procedures done right now. He agreed so next october i see him and agree to have the procedure done. So they run me through all the pre procedure stuff which includes biopsie of uterin wall all is good. So as is procedure when you have hysterectomy they send it away to be analyzed. Sure enough they found a spec of BC in my right ovary. So small it wouldnt show up on scans yet. So at this point im now MBC. As for the bladder part it could be as simple as he feels you are showing signs of a calapsing bladder which happens to many women in later years . My mother inlaw had the surgery in her 70s but my sons mother inlaw had it done early 60s. So i guess what im trying to say is even scans dont show all as some are too small to detect and dont assume all procedures mentioned has to do with cancer. As for the mammogram i dont know why you would be told you dont need one. I still have mammograms of my right breast. If they where to find something there im sure it would change my treatment plan. I would think they would biopsie it to see if it is the same type er+pr+hrs2-. That could determine treatment plan also. One piece of advise as you think of questions write them down and take with you to appt. One thing i have learned is during my dr visits is how quickly i get distracted with conversations and forget to ask all my questions or even what questions i had🤔 Good Luck stay positive!!!
I have had my surgery my surgeon called me as I was just returning from getting preop labs n clearances from pcp I had my ovaries n tubes removed n she did a DNC n scoped n biopsies on other areas
All good n I am recuperating now … glad that part over I had 2 c- sections n had alot of scar tissue n that side hurts alot more Just taking it easy. I did what you mentioned to write all my questions down It helped lots I tend to ramble n I focused on each question n made notes with her responses.
Have you thought about getting a second opinion? The best cancer centers in the US are the "Comprehensive Cancer Centers", a designation given by the National Cancer Institute, and listed by state on the NCI website. They are med school affiliated, have oncs who treat only breast cancer and do alot of research. I just googled BRIP 1 gene mutation and found info from Memorial Sloan Kettering Cancer Center, one of the top cancer centers in the US. It lists the phone number of their genetics counselors 646-888-4050--talking with one of them might be helpful. I was diagnosed with denovo MBC and still get mammograms every year. So much about this lousy cancer is scary! And learning new info can be upsetting. Having a close relative or friend go to appts with you can be helpful, at least it helps me alot. And it is okay to phone your onc between appts! Often an onc nurse will end up being the person you talk to and they will talk with the onc and then one of them will call you back to answer your questions, talk about side effects and symptoms and what to do about them. At least that's how it works for me. Keep us posted about what you learn and how you are feeling! Sending hugs, love and prayers.....
Sending hugs and love to you. I also suggest a second opinion and write down all your questions. I always have a list for my onc because it's the only way I'll know what I want to ask.
thank you everyone for your input… my oncologist appt is this Wednesday n I have questions for her. I was just upset that it went from an appointment to discuss having ovaries removed to a hysterectomy cancer stage n laparotomy procedure
Just very anxious about all this now .. am doing very well on my meds everything shrinking n I am 68 n once they start cutting well I don’t know if I feel strong enough for what she typed on my consent. My husband is also confused n upset when I told him my percentages my range is 5% to 15% with BRIP1 mutation
Hi everybody, Well I had the surgery… all went well…. She just removed my ovaries n tubes did several biopsies n all came back negative…It was very painful on my left side … she explained I had a lot of scar tissue from my 2 C-sections back in 70s. So 4 weeks I took it easy n was starting to feel like my old self … going into my 5th week I woke up n had excruciating pain on my left side n started taking Tylenol n using my heating pad with no resolve so I called surgeon nurse n she told me to do what I was already doing. I said I don’t want to mask the pain I wanna know what is causing it. Just continue what you are doing and rest was her response to me. Well after 3 days I went to the ER. I had a CT scan with contrast to find out I had acute diverticulitis. I was put on nasty antibiotics for 10 days. I lost almost 10 pounds. Also in the beginning of May before my ovary surgery I woke up n my left ear felt clogged. Long story short after the ovary surgery n still having discomfort from diverticulitis o needed ear surgery. All went well i just need to buy 2 new hearing aides. The clogged feeling gone I had a myringotomy n tube place on my eardrum….My last few months were brutal. But with all that the not being able to hear really bummed me out. I had to cancel 2 graduation parties n 2 BBQs. I was deaf as a doorknob. My old hearing aides from 2015 were no longer helping me. Was spending alot of time in my bedroom my husband is soft spoken. N I had to explain this is a serious disability. Then after finishing the diverticulitis antibiotics they teamed havoc on my BM. So I have to stay close to bathroom. I called my pcp for a GI name n pcp are gonna do some tests on me . I am afraid to eat. Other than soft foods n noodles with broth. What a hell of a few months.
Hi, I’m so sorry to hear you’ve been on a rollercoaster of one thing after another! Great news though that you didn’t need a hysterectomy and all the pathology came back negative!! That’s a relief I’m sure. Now to deal with the GI. I hope that all settles down soon too and is just repercussions of perhaps surgery and reaction to the meds. Have you tried eating prebiotic foods to counter the meds? That always helps me a lot. Feel better soon xx
Hi 13plus.,, after my ovarian surgery I was healing well n into the 5th week I woke up with ungodly lower left sided pain which I suffered with for 3 days calling NP from surgeon office not asking for pain meds but to do some tests to make sure nothing else was going on.., finally went to ER… I had diverticulitis omg. Put on heavy duty antibiotics which caused gut inflammation. I am under house arrest cause I never know when I am gonna have to run to bathroom. It’s just awful. Cause we use to go out to dinner which I enjoyed. So going at least 5 times a day after eating a cracker. My pcp did a stool sample no one called me after 10 days to tell me I had nerovirus which is highly contagious n I think I caught it in ER. after a week I calmed alittle. There is nothing they can do for that. So I called thinking h he would retest me but no he put me on 50 billion CFUs of probiotic n no dairy. So been on probiotics for 10 days eating a lot of boiled or baked chicken with rice but anything goes in my mouth comes out maybe 15 minutes to half hour. I lost 10 pounds or more now. It’s very depressing. N I am usually a happy go lucky person. But been very down. Recently after 4 BM I take Imodium which almost immediately calms my belly n the next day I seem ti have a normal BM. My friend is visiting n she is happy to just relax with me . N I have someone to chat with . I have had this after my mother passed in 2005 n had a house fire from the factory next door N had more then I czn count (colonoscopies) N I was still working but then I czn make it to bathroom now retired I can’t always make it m o now west shillouttes. I don’t know if it’s my meds cause Ibrance n Exemestane phamlet says my csuse diarrhea or constipation . If anyone out there is experiencing this n you found a remedy please let me know .., I have an appointment with a dietitian on October due to dairy n I had the gout N this had all been since one thing after another since my May ovarian surgery then my ears
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