Gayle's Cancer Updates

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mona50
Posts: 83
Joined: Tue Mar 28, 2017 8:24 am

Re: Gayle's Cancer Updates

Post by mona50 »

Gayle, I was very concerned about you after reading your "update". I second Sandi's excellent advice and suggestions. (not that you asked!) I was glad to read your daily check in and it seems like you do feel better today. I take "killing yourself" very seriously - I have experienced suicide up close and personal and it is NOT a good solution to problems!!! Hope you have a nice day and a very HAPPY MOTHER'S DAY. :)

gaylejackson2
Posts: 2958
Joined: Tue Sep 08, 2015 1:13 pm
Location: Utah

Re: Gayle's Cancer Updates

Post by gaylejackson2 »

SandiSAHM wrote:
Sat May 09, 2020 5:48 pm
1) Print your post and show it to your therapist, there's a lot to unwrap there and likely easier to hand her a printout than actually say it all out loud.

2) A dense question - can you say "no" to the doctors who have decided you're going to have a hysterectomy this summer? Is there a reason (the cynic in me says the reason is the bottom line - the hospital's, surgeon's, anesthesiologist's, etc - they see what your insurance is willing to pay and would rather have it in 2020 than 2021) they have to do it NOW? After all that chemo, which is designed to keep cancer at bay, they feel a need to do a second major surgery less than 12 months after the first one? Would you, the patient, not be better served if you were allowed to heal completely from the mastectomy, or at minimum get to a point where most of your days are free of related pain and side-effects, before going in yet again?

Can you just say to them, "You guys are really great, and I respect your expertise, but unless you think waiting a year is going to kill me, I don't think I can do another surgery right now. Can we talk about getting me fully over THIS one before deciding to add pain on top of what I still deal with every day?" Then make sure they know the whole scope of what you're still dealing with as a result of the mastectomy.

They have to live by the 'first do no harm' thing, they're there to HELP, not harm. I know you're brave, but honey, with medical people? Don't be brave - tell them you need help & time, to heal.

My Mom had (a full 3 years after her breast cancer) a hysterectomy, the vaginal / laparoscopic variety, but only because she had a condition where her bladder was falling and they had to 'shore it up' and knowing her history they offered her the added anti-cancer benefit of getting everything else out of there (she was well into her sixties so the whole instant menopause thing was not a concern) and she figured it was best. She said after the first 2 weeks it wasn't as hard to deal with as the lumpectomy / radiation - but she'd had 3 years in between to heal.
You have given me much to think about, and yes I think I will take you advice & print my post for my therapist. I'd email it to her but I do not have her email address. I'd write it all in my journal--have found it very theraputic in past, but do not trust that dh wouldn't go snooping again... do not think that I could write out everything I need to either without gouging & ripping the pages again, and I really LOVE THIS journal (it has my memories of my Dad) so won't be writing it down.

gaylejackson2
Posts: 2958
Joined: Tue Sep 08, 2015 1:13 pm
Location: Utah

Re: Gayle's Cancer Updates

Post by gaylejackson2 »

mona50 wrote:
Sun May 10, 2020 2:03 pm
Gayle, I was very concerned about you after reading your "update". I second Sandi's excellent advice and suggestions. (not that you asked!) I was glad to read your daily check in and it seems like you do feel better today. I take "killing yourself" very seriously - I have experienced suicide up close and personal and it is NOT a good solution to problems!!! Hope you have a nice day and a very HAPPY MOTHER'S DAY. :)
Thank you Mimi. I will not kill myself, but I HAVE BEEN feeling Very Dark lately!

I DO NOT want this hysterectomy.

Dgflorida
Posts: 4381
Joined: Wed Oct 07, 2015 8:10 pm

Re: Gayle's Cancer Updates

Post by Dgflorida »

I am sad to hear how much trauma you are enduring. I hope and pray you can find some peace and comfort, Gayle.

gaylejackson2
Posts: 2958
Joined: Tue Sep 08, 2015 1:13 pm
Location: Utah

Re: Gayle's Cancer Updates

Post by gaylejackson2 »

Here is the email I sent to my GYN oncologist last night with the reply from her nurse included.
————————

----- Message -----
From:Gayle Jackson
Sent:5/11/2020 10:53 PM MDT
To:Kathryn A Maurer, MD
Subject:Visit Follow-Up Question

Dear Ms Maurer,

You telling me, in our April 21, 2020 video visit, that your recommendation that I have a complete hysterectomy has sent me into a deep, dark depressive mood that makes my daily life difficult for me slog through.

My question is this, why the hurry to have this surgery done when I have just completed chemotherapy and am also still healing from my DIEP reconstruction & bilateral mastectomy? I feel ill & in considerable pain most days.

Sincerely yours,
Gayle Jackson

Office of Kathryn A Maurer, MD
RE: Visit Follow up question
5/12/20 10:54AM

Hi Gayle,
I am sorry that you are feeling ill and depressed. Dr. Maurer recommends for you to have the risk reducing surgery due to your BRCA mutation. You can definitely opt to just remove your tubes and ovaries only and that will dramatically decrease the risk for you of ovarian cancer. Removing your uterus is your own personal choice and does not have to be done related to BRCA.
Let me know your thoughts. The problem with waiting for surgery is that we do not have any good screening tests for ovarian cancer.
Thanks,
Veronica RN

gaylejackson2
Posts: 2958
Joined: Tue Sep 08, 2015 1:13 pm
Location: Utah

Re: Gayle's Cancer Updates

Post by gaylejackson2 »

gaylejackson2 wrote:
Wed May 13, 2020 1:48 am
Here is the email I sent to my GYN oncologist last night with the reply from her nurse included.
————————

----- Message -----
From:Gayle Jackson
Sent:5/11/2020 10:53 PM MDT
To:Kathryn A Maurer, MD
Subject:Visit Follow-Up Question

Dear Ms Maurer,

You telling me, in our April 21, 2020 video visit, that your recommendation that I have a complete hysterectomy has sent me into a deep, dark depressive mood that makes my daily life difficult for me slog through.

My question is this, why the hurry to have this surgery done when I have just completed chemotherapy and am also still healing from my DIEP reconstruction & bilateral mastectomy? I feel ill & in considerable pain most days.

Sincerely yours,
Gayle Jackson

Office of Kathryn A Maurer, MD
RE: Visit Follow up question
5/12/20 10:54AM

Hi Gayle,
I am sorry that you are feeling ill and depressed. Dr. Maurer recommends for you to have the risk reducing surgery due to your BRCA mutation. You can definitely opt to just remove your tubes and ovaries only and that will dramatically decrease the risk for you of ovarian cancer. Removing your uterus is your own personal choice and does not have to be done related to BRCA.
Let me know your thoughts. The problem with waiting for surgery is that we do not have any good screening tests for ovarian cancer.
Thanks,
Veronica RN
Very interesting that the nurse says that removing my uterus is your own personal choice when Dr M told me before that she “strongly recommends” the complete hysterectomy as uterine cancer almost always happens to 30-40% of her BRCA patients.
———
My sister went to Huntsman first, but said she felt like she was just a number to the doctors she met. Huntsman IS foremost All About Research, and I never felt the way she did until this video consult with Dr Maurer.

I found it VERY STRANGE that Dr M pushed so hard for me to have surgery so quickly when she had not even met with me face to face.

I don't want to be her research project either, and IF/WHEN I chose to have female organs removed, I may have my obgyn do the surgery-if he does those. I do know that I have decided to Not make any final decisions regarding hysterectomy until AFTER I talk to Dr S, my obgyn next week. I will probably cancel the surgery—I just Do Not Feel good about it right now.

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