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Re: Gayle's Cancer Updates

Posted: Sun May 24, 2020 1:22 am
by gaylejackson2
LWolfT wrote:
Fri May 22, 2020 11:11 am
What does your regular gyn say? It sounds as if you have no confidence in this doctor. Perhaps you should consider getting another referral or a second opinion?
Dh said approximately the same thing today, that maybe I need to find another Dh.

My regular GYN recommends a complete hysterectomy too, and told me all the reasons why. He said he could do the surgery, but felt that there is no great rush to get it done other than my BRCA1 cancer gene discovery.
He did recommend I ask my GYN oncologist what her hurry was, but I got Such a run-around from her nurse when I emailed in questions for her to pass along to Dr M—which made me think that there really is something else going on.

Re: Gayle's Cancer Updates

Posted: Sun May 24, 2020 7:25 am
by Dgflorida
Yes, consider a second opinion or whatever you need to do to feel comfortable. Feeling comfortable and feeling like you made the decision and wasn't forced into it is so important. Trust yourself and your own instincts. Good luck. (hugs)

Re: Gayle's Cancer Updates

Posted: Sun May 24, 2020 4:06 pm
by bigcheryl
As someone who has breast cancer twice I understand the need to trust your doctor's. You have the Brac gene that is positive, that is a fact. You may not need to rush to have the surgery tomorrow but the doctors want you to be with your kids and your chance for ovarian cancer is higher.

Re: Gayle's Cancer Updates

Posted: Sat May 30, 2020 6:09 am
by gaylejackson2
So my current cancer-related situation:

I emailed the GYN oncologist (well her nurses read & reply most of the time) a bunch of questions today (well yesterday now). I figure I’ll wait until Tuesday at closing time for answers; maybe that doesnt seem very ling to you all, but as I had actually sent the same questions earlier in the week, with no reply up to Friday 5/29.
So... if I still get no answer, then I’m planning to call my OBGYN to schedule surgery for early July. If I do get a reply, well I’ll figure out my next step from there.

I still feel like Dr Maurer, the Huntsman GYN Oncologist has some other kind of agenda, and that is why she is pushing for me to have this surgery quickly.

Re: Gayle's Cancer Updates

Posted: Sat May 30, 2020 7:42 am
by bigcheryl
Gayle if you don't trust the oncologist gyn doctor go with your regular one. You'll never feel comfortable and you need to. I'm sorry you think that doctor has something else going on, when I asked about a hysterectomy I was told I had no greater risk. Everyone's journey is very different.

Re: Gayle's Cancer Updates

Posted: Mon Jun 22, 2020 8:13 pm
by gaylejackson2
Dear Friends & Loved Ones,

Yes! I am Finally getting around to sending out this email to you all, after getting lots of msgs & emails from many of you (Thanks Folks). I do have lots of reasons Why I haven't done this yet, but the bald truth is that I Just Didn't Want To Do It. However, as I had finished typing up everything on June 13th 2020, when I was attempting to copy it to send out, Instead I managed to delete about 2/3 of the body of my email. Soo, am now retyping with the hope to send this out tonight by email and posted on my forums. (Truthfully, if was probably Better that I lost So Much as I had vented A Lot of my frustrations & anger over Losing MORE of My Body to this dratted Breast Cancer!!!) :( :evil:

April was supposed to have been my month for Dr Appointments on April 7-8 prior to May & June surgeries, however COVID19 happened, which means I got Telehealth visits instead (they went mostly okay), and I'll give as many details below as I can remember.
**I had a phone visit with Dr Ward's PA Rosemary Conder on April 2nd: We discussed my continuing chemo-related problems (bone muscle pain), if any Hair has come in (yes, I'm at almost 1 INCH Today 6/22/20), and we discussed a pain med regime that I am still following. My next Appt is on October 13th.
**April 7th was my Telehealth visit with Dr Matsen, (she is my Breast Cancer Surgeon for those of you just joining this email list), we spoke by the in-app program of University Healthcare's MyChart Video Chat. I had sent her pictures of my scars on abdomen and Breasts, so we discussed those. Because of Covid 19, she couldn't meet with me, but did set up a future appointment to meet in August, on the 4th.
**April 9th was my first-time ever visit with Dr Goodwin, although I actually spoke to his PA Marie Mulcock (aka Masha). This was the only Medical Meeting by Zoom, it worked great until the end when it glitched and we could hear her but had no pictures. She Gave US (hubby was there for this one too, as we wanted LOTS of information), and She did give us So Much information that I couldn't write fast enough-She did send me our "visit notes" later thankfully! So Dr Goodwin is a Plastic Surgeon, who helped Dr Panucci (another PS) with my Bilateral Mastectomy and Immediate DIEP FLAP reconstruction. I currently do not have a future appointment with Dr Goodwin, although I'm hopeful of arranging one in August or October around the same dates as the other Dr appts.
**April 21st was my Telehealth visit (in app on MyChart) with Dr Maurer, whom I have NEVER Met prior to our video chat visit. Dr Maurer was full of LOTS of great comments about "according to My research," "My Research Shows X about BRCA1 Cancer Gene patients," "Former Breast Cancer patients have X & X chance of developing Other cancers including Another BC, Ovarian, Uterine, Fallopian, and/or Endometrial," etc. She DID make a diagram on paper of how she would make (5) incisions in my belly & abdomin to allow the robotic arms (which she will guide by microscope and her hands) to do the surgery.

I did have A LOT of questions for Dr Maurer in regards to the possible early onset of Osteoporosis due to hysterectomy BEFORE natural Menopause Onset. I also asked her about possible Cardiovascular problems also due to the early Hysterectomy; I also asked her about Hormone Replacement Therapy. Well.... about when I asked my above questions the 2nd or 3rd time, she started gathering up her papers, and then said "well we are out of time (just under 14 minutes), so please Do send your questions to me via the MyChart msg app, OR call my office to schedule Another Telehealth visit! Good bye!" Click and she's gone!

Well, I have TRIED SO Many time to get my questions to Dr Maurer through the MyChart email/message app. I have sent them, No Less than every day or every other day for Several Weeks!! The only response I received was from her 4 Clinic Nurses, was repeated suggestions that I call their office scheduler to arrange more TeleHealth visits. Well, AFTER I say how much they charged my Insurance (about $431) for that 14-ish minutes, I was definitely NOT inclined to schedule Another Video visit where she tells me about her Research, and ignores my real questions. Also, her nurses called me less than an hour after Dr Maurer hung up, and had me on the Surgery Schedule Board!! :o:o

I think that I was driving myself half-crazy, and there's a couple of posts on Fb and other Forums that prove that. I kept praying, and praying for help... After a couple of weeks, I *finally* Listened. I was to call my sister Amelia, and ask her about her Breast Cancer & female organ removal surgeries. SHE told me that her local OBGYN did her Ovary removal, and she recommended that I talk to MY OBGYN. After That conversation, I immediately made an appt with my OBGYN, Dr Syndergaard, and spoke to him on May 18th. I recorded (iPhone apps are so useful) our conversation so I could listen it it over & over. Dr Syn DID answer my questions, and the whys and wherefores of why hyster's are important, and Why I should do a complete over just a partial!! He did say to let him know IF I wanted him to do the Surgery, as soon as possible! After my visit with Dr Syn, I continued to pray, as well as continuing to to send my questions to Dr Maurer's email messages, and my result was Either Zero Silence OR more suggestions from her nurses to schedule a new TeleHealth visit.
After Another 7-10 days of silence from Dr Maurer's office, I had gone to see an ENT Dr, for nose/throat issues. I had been praying So Hard, and finally After that ENT appointment, I said out loud, "I want to have Dr Syndergaard do my Hysterectomy, and cancel the Appt's with Dr Maurer!!" Oh I felt Such an Immediate Relief, and knew because of this Feeling That I Had Made the best & Correct Decision for me!!

My next step was to talk to my Insurance company's pre-approval Dept, and asked them to switch the preapproved hysterectomy surgery from Huntsman to the Uintah Basin Medical Center with a bit extra for the bladder support surgery. I chose to keep the date the same, on July 7th, and hubby had already arranged for the time off from work. I will likely stay one night unless something goes awry during/after the surgery. A week before the surgery, I'll need to get a COVID19 test a week before the surgery, and I get to call for surgery times on July 6th.

Now, I'm at the "waiting stage" where I hope to get Everything done that I need to do (planting my veg garden, frozen food arrangements-or easy recipes for boys to fix, post-surgery care, Mixing LOTS GF FLOURS, and/or homemade GF bread, etc.). I'm also figuring out knitting projects, and doing my own wool-spinning, which I may not be able to do! This summer, I have also started painting rocks for hiding--my Girls LOVE this activity and want to do it Every Day (or whenever they are not playing with the neighbors)!

For all of you who are just joining on my Cancer Update Emails, Yes I Do Tend to Very Wordy, but I also supply LOTS of information that way Because I LIKE to receive LOTS Information. Again, if this is your first Cancer Update email from me, and you would like to receive ALL of the Other Emails, please send me a quick reply.

Thank you all for your great Support, and prayers! I love you all, and pray for you all too!

=) Gayle Peel Jackson