New on this site

Cid1

Hi all,
I'm new to this site as I am a member on Inspire which is international. Looking for support and advise from woman who are survivors of OVC in Canada. 
I was diagnosed back in 2015 with Borderline 2B and on February 25, 2020 had debulking surgery for a recurrence which has now mutated to a Low Grade Serous Carcinoma. Can anyone give me some examples of how you are being treated by your oncologist if you have the similar subgroup as mine?

beachgirl

Hello Cid1, I am  sorry to hear about your recurrence.   I am a survivor of High grade serous carcinoma stage 1C (2016 was my surgery) I completed chemotherapy on January 2017 - Low grade is better than high grade if you were to pick.  My treatment was surgery a total hysterectomy, bilateral oophorectomy  and then 6 months of carboplatin and taxol.  It has worked so far - I pray every day and look after myself more than ever.  Proper nutrition is key, no stress is also a big factor.  I wish you best of health and you will get through this~  Our minds help heal our body's.  

Flowergirl

Hello @Cid1 - welcome to the chat site... hope you are managing ok @beachgirl
I am hoping @Chezilme will be able to connect with you to chat about the similar diagnosis sub type as well. 

Cid1

Thank you so much for the encouragement. I'm hoping the debulking surgery was all I needed but I am feeling some pain but trying to not let it take over.

Chezilme

Hi @Cid1,

I'll be happy to share my course of treatment for low-grade serous. I know that when looking at statistics low-grade can look like having a better outcome than high-grade but if I had to pick I would choose high-grade at 65 rather than low-grade at 31. Everyone's journey is different and in the end I would choose neither.

So I had a first surgery in Nov 2015 to remove a cyst on my left ovary that turned out to be cancerous. In February 2016 I had a second surgery to remove my left ovary and fallopian tube and omentum. Markers were going up slowly and in December 2017 I had multiple nodules in the abdomen up to the diaphragm. In February 2018 I had a major debulking surgery + total hysterectomy. From May to August 2018 I had chemotherapy (6 cycles of carboplatin+paclitaxel). In June 2019 some nodules appeared and marker was back up. So I was put on Letrozole, an aromatase inhibitor to block estrogen production. It worked for roughly 6 months. In September 2019 marker was rising again so we looked for clinical trials. And in February 2020 I started an immunotherapy trial. I have a scan Wednesday to see if it is working.

Let me know if you have any other questions, I'll be happy to help.

Cid1

Hi Chezilme,
You said you are Low Grade but what was your grade and where are being treated? 

Cid1

Hi Chezilme, When you get the time let me know how your scan went today and also let me know what grade your cancer was on original pathology. Which hospital are you being treated at?

MarilynOCC

Hi @Cid1

Welcome to OVdialogue.  There is a discussion about low grade serous that you might want to check out:

https://ovdialogue.ovariancanada.org/discussion/258/low-grade-serous-and-hormone-therapy#latest

There is a little trick to use too, in order to tag someone in a conversation - if you use @resilient1 as I know she has low grade serous and may be able to share some things with you, too.

Marely

Bonjour @Cid1,
J’ai moi aussi un cancer de bas grade, stade 3C.
Diagnostiqué en 2018. J’ai été opérée pour une hystérectomie totale + résection intestinale car le cancer avait infiltré le gros intestin.
Après la chirurgie, j’ai eu 6 traitements de chimiothérapie. Depuis, je suis en hormonothérapie (Letrozole). Il me reste toujours quelques cellules cancéreuses. Je passe un taco aux 6 mois pour voir comment les cellules se comportent. Depuis septembre 2018, elles ont un peu diminuées pour ensuite rester sans bouger. 

C’est l’effet souhaité par l’hormonothérapie, que de les garder endormies le plus longtemps possible.
On dit du «bas grade» que ce sont des cellules plus paresseuses et indolentes, ayant plus tendance à grossir qu’à se propager. 

Par contre, la chimiothérapie a peu ou pas d’effet sur lui. Ma gynéco-oncologue dit que c’est comme si ces cellules avaient un petit parapluie sur leur tête, empêchant la chimiothérapie de bien faire son travail. D’où le fait que dans mon cas, comme c’était assez répandu (3C), on ne peut guérir.
Mais on m’a dit que l’on peut contrôler (en réopérant au besoin, nouvelle hormonothérapie si celle actuelle ne conviendrait plus).

Voilà pour moi. Bien sûr chaque personne a un parcours bien à elle 🙂
Au plaisir 👋

Chezilme

Hi @Cid1,

Sorry for my late reply, I didn't see you had posted in the discussion
I am being treated at the CHUM. I have low-grade serous, and when I was first diagnosed it was a stage 1 because it was limited to the ovary. After my recurrence it became stage 3 I think, because it had spread to the abdominal cavity.
My latest scan results show that the tumors are stable in size and the marker dropped a few points. So, little victory here

How are you doing today?

Fancy2

Bonjour @Marely , heureuse de faire ta connaissance! Bienvenue sur OVdialogue.

Tout comme toi, j’ai été diagnostiquée au stade 3C, un vendredi 13 octobre 2017 pour être exacte.

Je me dois de te dire qu’il y a 2 côtés à ce forum de discussion, et que tu es la bienvenue du côté francophone. 

Si tu cliques sur l’onglet Français complètement en haut, à droite de ton écran, tu basculeras du côté Français. Tu devras t’inscrire à nouveau pour pouvoir échanger avec nous.

Si tu as des questions, n’hésite surtout pas, je me ferai un plaisir d’y répondre.

À bientôt, Fancy2

Hi Marely,

I think it’s great that you want to support @cid1, thank you!

I must inform you though that there are 2 sides to OVdialogue, and that you can communicate in French with other teal sisters.

All you need to do is select the Français button on the top right corner of your screen.

You will probably have to register a second time around.

Please feel free to ask us any questions, should you have any, we’ll be glad to help.

And of course, welcome to OVdialogue.

Fancy2

LoDM

Hello @Cid1,

When you we re diagnosed in 2015, did you have a complete hysterectomy at this time?

I have also low grade + borderline and i hard surgery last year.

Thank you
Laurence 

MarilynOCC

Hi @LoDM

What did the doctors remove during your surgery last year?  Sometimes with borderline ovarian cancer they may not remove all your reproductive organs.  With low grade serous, I believe the standard surgery would include removal of ovaries, fallopian tubes, uterus, cervix, omentum and they may also remove some lymph nodes. Are you on Letrozole too?

LoDM

Hi @Marilyn
yes they removed all of this. And for the moment, I am not on Letrozole because they preferred to keep this option for a recurrence since the chemo does not work on low grade serous. 
But I know that not all doctors agree on the treatment to be given with low grade... and that's why it is sometime a little bit scary.

Cid1

Hi Chezilme,
Thank you so much for your insight and journey information. I need some support to be able to conquer this with my doctor. I just find her very passive when it comes to my treatment. I'm glad in some way that at least your tumors are stable. Can I ask where is CHUM? 

Cid1

Hi LoDM,
When first diagnosed back in 2015 it was found accidentally and a frozen section determined it was borderline. In oncology the doctors decided to send me back to a gynecologist instead of their team looking after me. When pathology came back it was already on both ovaries and spread to the omentum. The gynecologist took out everything except for the omentum. I went onto the oncology department for surveillance. All scans never detected anything until last fall I started to occasionally bleed and felt like something on my right side was exploding. Right from the beginning I always felt like something was going on but no one believed me. My husband took me to the emerg where a CT scan detected a 5cm tumor on right side flank. My oncologist did not believe it was ovarian so a gastrointestinal doctor went in and did a biopsy. In recovery he came to tell me that it was the ovarian and that it had spread throughout my abdominal cavity up to the diaphragm area. The oncologist has gone in this February and did a debuliking surgery. In August I'm to have a CT scan and if anything shows up she wants to put me on Letrozole. I would like to do a couple of round of chemotherapy to try and zap as much as possible but not sure if I have the right to request that kind of treatment. Can anyone out there advise if I can request the route of treatment I proceed with?  

Chezilme

Hi @Cid1, the CHUM is in Montreal (Centre Hospitalier de l'Université de Montréal)

Cid1

Hi Chezilme,
Thank for the information. 

Flowergirl

Cid1 said:

.... In August I'm to have a CT scan and if anything shows up she wants to put me on Letrozole. I would like to do a couple of round of chemotherapy to try and zap as much as possible but not sure if I have the right to request that kind of treatment. Can anyone out there advise if I can request the route of treatment I proceed with?  

Hello @Cid1- thank you for sharing all you have been through and sorry you had to deal with all those medical issues.
I hope this message finds you feeling well today. I'm glad you were able to connect with @Chezilme and @LoDM

In regards to your above comment about requesting the route of treatment:
Through our all of our connections, many of us have found that when we share our experiences, that helps each women advocate for herself when going into appointments, (armed with information and options) so one can know which questions to ask to help make decisions best for the personal situation. Are you able to discuss the various options / treatment plans you may have with the medical team or nurse practitioner? Did they already provide you with a treatment plan? 
By asking questions for a specific course of action, to see if it is a suitable option for your condition (and ask why or why not) it can help you make informed decisions and gain some piece of mind. I hope this has been somewhat helpful for when you have that discussion with your medical team.

maggiemae

Hi @Cid1, I've just read this message thread and noticed your question about whether or not you can request the treatment you proceed with.  I'm not sure if it will help, but my belief is that we all need to advocate for ourselves in regard to our treatment, and that it may be to our advantage to ask for what we want in discussions with our medical team.  If what we are requesting is truly contra-indicated (not good for us), they will let us know that, along with the reasons why.  But it never hurts to ask.

My cancer is different than yours, but I did find I had to advocate for my treatment and that there were small errors made on the road to diagnosis, which took a very long time as a result, just as you describe in your case.  I was diagnosed in 2018 with metastatic high grade serous carcinoma, stage 3b, which had spread to the peritoneum, bowel, diaphram and spleen.  I  underwent the standard treatment of a total hysterectomy, bilateral oophorectomy, omentectomy and peritonectomy in July that year, followed by 6 months of carboplatin and taxol.  However there was still tumor material remaining because the debulking had been sub-optimal.  The standard protocol was to just continue to monitor the tumors and to treat again with more chemo if they showed evidence of growing again.  I was not comfortable with leaving them in me!

I advocated for a referral to another city for a surgery I'd read about in peer reviewed medical journals.  My oncologist did not want to make that referral for me (some oncologists feel this particular surgery is too high risk), but told me I had the right to request a second opinion.  I explained it was not a second opinion I wanted, but specifically that surgery (called HIPEC surgery, which stands for Heated Intra-Peritoneal Chemotherapy). I had fully researched HIPEC in medical journals, and I'd also contacted the doctor at the Tom Baker Cancer Center in Calgary who conducts it, to ask if I would be a candidate.  It turned out that my oncologist had actually studied under him, and she did agree to make the referral for me as I was adamant, and as HIPEC was not available in my province. I'm not sure if it's still the case, but at that time Calgary was the only place in Canada where HIPEC was offered for Ovarian Cancer, and it was not considered a part of the standard treatment protocol. It had only been being used for Ovarian CA for about 4 years at that time (It had been used for many years though in treating colon and some other cancers).

I don't know if HIPEC helps with Low Grade Serous, such as exists in your case, but I do know that I am very grateful that I had the strength and conviction to advocate for myself,.  I'm also very, very grateful to both my referring oncologist and to the oncologist who performed my HIPEC surgery, which occurred in January 2019, followed by 3 months of chemo (which is standard).  My next CT Scan in April showed a small nodule that couldn't be determined as cancerous or not.  The next CT Scan in July showed it was gone (it had been scar tissue from the surgery). In November 2019, I learned I was in remission, and my last two check ups showed that I remain in remission with a CA-125 of 12.  So far, so good.  

I guess the long and short of it is just don't be afraid to ask.  This disease is hard enough as it is without increasing the fear we already feel by second-guessing our choices!  I wish you every good outcome in your journey with this cancer.  Feel free to ask any questions you may have... if I can help you in any way, I will.  All the best, maggiemae

Cid1

Hi Maggiemae,
Thank you so much for sharing your ordeal with me and I'm so happy for you that it was worth you advocating for yourself to reach remission. Congrats that's great success. I have been researching many different medications and have reached out to a couple of other cancer organizations for some insight. I have decided to wait to see what the outcome of my scan in August will reveal and if bad news I will approach my doctors with some concerns. Keep well and safe.

Cid1

Hi Flowergirl, 
I appreciate your input and knowledge based on your experience. You are so right when you mention that we are only going to get heard by our doctors if we arm ourself with the proper information and evidence that a treatment is worth advocating for. I understand when you also mention that they will not reject a treatment unless it truly has no benefit to the patient. That statement can be a little controversial as I have heard certain doctors only offer certain medications and treatment because of financial reasons not our health. 

maggiemae

Hi @Cid1, I just checked my e-mail before bed and saw your message. I hope your scan in August brings good news. The decisions we make for ourselves in our cancer journeys are such a personal thing. I'm so glad you've been able to make a decision that you are comfortable with and that brings you some peace. Blessings, M.