Just An Update on HG Serous Ovarian Cancer

Posted by jenelleseaman @jenelleseaman, Sep 18 9:36am

Just to let everyone know that the cancer has returned yet again. I had a PET scan last week after three months, and it has returned with a vengeance, both in the abdomen and possibly the chest cavity.
I am having a FNA biopsy under ultrasound tomorrow of a lymph node near my left clavicle to see what it is. I’m told that ovarian cancer does not usually spread that far, but that I have never followed the rules.
I’m going to be commencing chemotherapy for the ninth time soon. The dates have not been organised yet; my oncologist wants to find out the results of the biopsy. I’m also dealing with sarcoidosis which has made life a little more interesting.
I’m also up to the next drug, Gemcitabine is its name in Australia. There are several protocols for its use, and I don’t know which I will be using.
Something else that is of note- I have been asked to contribute my story at an Oncology Conference in November, which I am excited about.
I’m sorry that the cancer is back yet again. It’s not unexpected. I’m now ready to face whatever comes. When I was told of the results my oncologist said it’s very concerning, but also said that for the last 15 years I haven’t just done well, I have been exceptional!
With God’s blessing I hope to stay that way.
These daffodils were a gift from the girls in my Year 12 Chemistry class. They gave them to me on Daffodil Day with a very special card that they each signed with a personal message.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

I visited my oncologist today. He surprised me by saying he wants to wait another 2 months and then do another PET CT scan. He said he wants to give my body more time to recover from the last chemotherapy treatment, which ended in April of this year. He said the better I am, the more effective the next chemotherapy treatment will be.
He thinks there’s no harm in waiting for that amount of time. He wants to find out if the hot spots on the previous scan get bigger or stay the same. If the disease is stable, then I may be able to delay chemotherapy until next year, but he doesn’t think that will happen.
I have worked out that I am a bit of an experiment. No one has lived as long as I have, with the recurrence as many times as I have had. He has told me previously that the longest anyone had survived before me was 11 years. I’m a record for him!

REPLY
Profile picture for jenelleseaman @jenelleseaman

I visited my oncologist today. He surprised me by saying he wants to wait another 2 months and then do another PET CT scan. He said he wants to give my body more time to recover from the last chemotherapy treatment, which ended in April of this year. He said the better I am, the more effective the next chemotherapy treatment will be.
He thinks there’s no harm in waiting for that amount of time. He wants to find out if the hot spots on the previous scan get bigger or stay the same. If the disease is stable, then I may be able to delay chemotherapy until next year, but he doesn’t think that will happen.
I have worked out that I am a bit of an experiment. No one has lived as long as I have, with the recurrence as many times as I have had. He has told me previously that the longest anyone had survived before me was 11 years. I’m a record for him!

Jump to this post

@jenelleseaman Thank you for the update. Considering how many times you have been through chemotherapy your oncologist's recommendations cto wait 2 months, repeat the PET Scan, could be a bit of a relief for you. You've lived and thrived with High Grade Serous Cancer of more than a decade. How are you feeling about his recommendation?

REPLY
Profile picture for Helen, Volunteer Mentor @naturegirl5

@jenelleseaman Thank you for the update. Considering how many times you have been through chemotherapy your oncologist's recommendations cto wait 2 months, repeat the PET Scan, could be a bit of a relief for you. You've lived and thrived with High Grade Serous Cancer of more than a decade. How are you feeling about his recommendation?

Jump to this post

@naturegirl5
It’s postponing the inevitable, but I have made commitments to certain tasks that I will be able to fulfill without any problems. I have applied to mark the HSC Chemistry exam this year, which I really want to do. I wasn’t sure if I would be able to. I can finish the year at school properly as well. So, I am actually relieved that the option to wait was given.
I know that my oncologist had a meeting to talk about my case with other doctors before I saw him yesterday. I have confidence in the team that are caring for me. I also trust that God will give them wisdom in the decisions that they make.

REPLY
Profile picture for jenelleseaman @jenelleseaman

@naturegirl5
It’s postponing the inevitable, but I have made commitments to certain tasks that I will be able to fulfill without any problems. I have applied to mark the HSC Chemistry exam this year, which I really want to do. I wasn’t sure if I would be able to. I can finish the year at school properly as well. So, I am actually relieved that the option to wait was given.
I know that my oncologist had a meeting to talk about my case with other doctors before I saw him yesterday. I have confidence in the team that are caring for me. I also trust that God will give them wisdom in the decisions that they make.

Jump to this post

@jenelleseaman I am in awe of how you accept the inevitable, as you refer to it, and demonstrate a certain calmness. Perhaps your case is a bit of an experiment and yet your oncologist who you have worked with for many years is not only the "investigator" but also a "participant" in this experiment. Your oncologist wisely seeks out collaboration with the other physicians to ensure every avenue has been explored. So, with that, it's wonderful that you can go forward with your commitments, including the HSC Chemistry exam and finish the school year. I say all this knowing that in your situation I would try to do the same with my honored commitments but inside I would be freaking out. That's how I felt, anyway, when I had a recurrence of endometrial cancer four years ago.

I'll check back in with your here in two months and I hope that you will keep me informed about your progress through this next treatment. Can we do that together?

REPLY

Every year I try and gift my oncologist with something significant at Christmas. Christmas came early this year because I couldn’t wait to give him what I had ‘found’ for him. I got the idea early in the year to get a bobble head made that resembled him.
I gave it to him during the visit when I got the PET scan results. I consider him to be a friend as well as a fellow warrior in this fight. He openly says that he has no understanding of what I go through, having never had cancer himself.
This is the figurine! He loved it, and it is on a shelf in the room where he sees his patients.

REPLY

I am sorry to hear that. But I am amazed to hear of someone with this disease talking 15 years!👍Don’t know your story but you are in my thoughts!🩷
Just joined this group- 11 months in with Stage 4 High Grade Serous, age 71 BRCA1 Gene
Wishing you well and thank you for sharing!😊🇨🇦

REPLY

Very briefly, diagnosed with stage 3c in August 2010. It recurred in May 2014 and then in 2016, 2017, 2021, 2022, 2023, 2024 and again just recently. I’ve had a Whipples in 2021 too, but not for pancreatic cancer! A lymph node on the pancreas had been troublesome, and had grown so large it was growing through the wall of the duodenum. That was also while I was on weekly paclitaxol! I’m just very thankful that I’m still able to do what I love, teach.

REPLY

I forgot to say that I was 48 when I was first diagnosed. I had a radical hysterectomy which was not laparoscopic! I’m now almost 64 and going strong. I do not have the BRCA1 or 2 mutations. No one in my family has had ovarian cancer that I know of.

REPLY
Profile picture for angcomeau @angcomeau

Hello, I too share the high grade serous carcinoma ovarian cancer. I’m on my 6th type of chemo which is a clinical trial this time. I had tried another clinical trial in 2024 without luck. I was most recently on Elahere with Avastin, and it worked for a while. Elahere gave me vision issues. When it stopped working, I moved to an Antibody Drug Conjugate drug trial for HER2 positive women. My CA125 has gone from 301 to 84 after 3 infusions. Gemcitabene is one drug I have not tried. Thank you for sharing your story and giving me hope. This is my 4th year in this journey. One question I have for you, is do you exercise, and if so, how much?

Jump to this post

@angcomeau
If you are able to exercise, by ALL means do so. Cardio and resistance training is touted as the one of most beneficial regimes for cancer paients.

REPLY
Please sign in or register to post a reply.