Bereaved Mom with Ovarian cancer diagnosis following total hysterectomy

Kathydornan

Hello. I’m new here, and happy to find you.  I am still not sure this can really be happening to me.  My only son died suddenly and tragically almost a year ago, it has been such a tough year.  I haven’t been feeling well for months, but mostly chalked it up to grief and stress.  A recent ultrasound discovered a 10 cm mass under my rib cage, between my lung and my liver.  The pathology reports show it is an ovarian ca source...the strangest thing is I had my ovaries and a total hysterectomy 10 years ago.  I was nervous about OV CA because my Mom died of it at 68.  This is all so surreal, I am waiting for an appointment at the cancer agency, and in the meantime lymph nodes all through my body hurt, I’m extremely tired and having dizzy spells. And scared!!  Can anyone relate and offer any guidance, support, relate able experiences...thank you..kathy 

MarilynOCC Moderator

Hi @Kathydornan

So sorry to hear what you have been going through.  I can't imagine what it is like to lose your only son!  It is understandable that you just thought what you were feeling physically was grief and stress.  It does seem strange 10 yrs after removal of your ovaries and your uterus that would develop ovarian cancer.   There is another cancer called Primary peritoneal cancer which looks the same as ovarian cancer under the microscope but the peritoneum is the lining of the abdomen.  Hopefully, when you see the oncologist at the cancer centre they will have some answers and treatment suggestions for you.  I think waiting is always harder than knowing.  You might want to check out the category of discussions on the right called "Encouragement and Support".  You may find some encouraging words there. 

Let us know how you are doing.

Marilyn

Kathydornan

Hello Marilyn and thank you so much for your kind and supportive message.  What a good feeling to hear from someone here, I realize that establishing peer support is key right now.  Are there any regular groups  here?  You are right, the waiting is worse.  I am told that because this is unusual, it is taking time to triage my file to the right experts. One oncologist is speculating that cells left behind after hysterectomy started the cancer, but the other diagnosis you mention makes sense too.  If it was peritoneal cancer, I am assuming this wouldn’t be the right group for me?
in the meantime, I read in your bio Marilyn about the By Your Side publication, could I receive a copy of that please?  So encouraged and happy to hear your story of being cancer free 🙏

Kathy

Flowergirl

Welcome to the chat site @Kathydornan... I am sorry you are having to deal with grief and the recent health situation as the same time.. hoping you are able to connect with the supports you need. We are glad you found the chat site; much support and encouragement can be found throughout the discussions as many women share their experiences.
And big thanks to @Marilyn and OCC for your continued supports!

We can relate to any gynecological cancer so you are in the right company for support! And yes, all that waiting really seems to be the worst part of the situation. On a personal note, I know from my experiences it is tough stuff, that waiting anxiety. Do you have a project or hobby, something that brings you some joy to give yourself a break?

The reference guide can be ordered here: https://ovariancanada.org/living-with-ovarian-cancer/support-resources

Hope that helps a bit - hugs from across the miles and the power of technologies!

maggiemae

Hi @Kathydornan, I just read your first message and was so moved by what you've been going through.  I hope that, by now, you've been able to find some answers medically and some peace in those answers; if only in relieving some of the uncertainty.  I just wanted to pass on something that my Mother-in-Law does that she says is so helpful to her in dealing with the loss of her husband.  She carries on 'conversations' with him on a regular basis; just speaking her truths to him, though he died several years ago now.  I wish you had your son to help you through this right now, but perhaps such 'conversations' may help.  Otherwise, please know we are all pulling for you and do let us know how you are doing.  Kindest regards, M.

walkabout

Hi @Kathydorman - so sorry to hear you are dealing with your personal grief and the adjustment to your personal diagnosis - so happy you have found this site. If you live in the Vancouver/Lower Mainland , we have a bi monthly support group and as one of the facilitators , I would like to extend an invitation to you. During this current time we are now on Zoom however may someday return to face to face meetings. If you like more information, am very happy to respond to your questions.

I know you will find By Your Side very helpful - hope you have in your hands now or soon. Hugs across the miles and finding support through our responses

Kathydornan

Thank you @walkabout @maggiemae @Flowergirl @MarilynOCC
I would LOVE to be part of a support group, please consider me available.  Thank you for that!!
@maggiemae i talk to my son regularly, and it’s so healing. I’m also guided by how I feel he would want me to approach this, and that’s helpful...he was a fierce warrior and I think we’re cut from the same cloth.  Thank you for the support 🙏 

I’m in my treatment now, and taking some getting used to...side effects are real, and that has worn down my spirit a little.  Emotionally, I’m interested in exploring the connection between losing my son, and ovarian cancer...if anyone has any resources, insight, contacts I’d be most grateful.
also, where do people go when they need to rest but be close to hospital (I’ve had two ER visits with extreme pain).  I feel like I need to be restored more to really take this on with grace and strength.
love to all, kathy xo

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

Flowergirl

Hello again @Kathydornan - hoping today's message finds you managing well and settled with your recent ER visits and pain.

maggiemae

Hi @Kathydornan, I'm so glad to hear that you are getting some peace, comfort and guidance through your son's memory.  Regarding where to go when needing to rest and be near hospital, I'm nor sure how it is in your area, but when I was in Calgary for surgery, the hospital there had a hospice-type center attached to it where my husband could stay for a very reasonable price during the month I was in hospital.  Our hospital here in S'toon also has a cancer lodge across the street for loved ones to stay, as well as the Ronald MacDonald House. But for patients themselves, I would ask the Social Work and/or Psychology staff at your local Cancer Center for advice.  I'm sure they are aware of resource(s) that would be suitable for you in your area - in fact, the ER staff may be as well.  Alternatively, perhaps one of OCC's directors will have an answer for you, so I will link this to @Flowergirl and @StephOCC for you (@MarilynOCC is away just now).  I hope your pain is being well managed and that you are beginning to find your spirits rising, however slowly it may seem to occur...there is no question it is a long and difficult road when complicated by grief.  My love to you, M.

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

walkabout

Hi @Kathydorman
So good to hear back from you and  you would like to be part of our Vancouver support group-  please be in touch with Tracy Kolwich, Regional Director Toll free: 1-877-413-7970 Ext. 341 or Tel: 604-676-3428 Ext. 341 ( Vancouver)

Could you say a little bit more about your last question please " where do people go when they need to rest but be close to hospital ? - might be able to offer more when I understand your needs- don't want to make assumptions - thank you 

Scarstef

Hi Kathy, I am so sorry.  Your story sounds like my sister.   She was diagnosed in 2018 with ovarian cancer.   While she was doing chemo,. Her 4 yr old son was diagnosed bwith brain cancer.  He died in her arms 7 months later.  She then had a recurrence.  She just finished chemo for the recurrence.  She is not only fighting this disease, but also grieving everyday BC of her loss- her son.  
I'm so sorry, I pray that you find strength.  I am suffering watching my sister.  But she is stronger than she thinks and so are you.   Btw, were you BRCA positive?

Kathydornan

Hello to everyone who responded to me.  I am back here seeking advice and input on an upcoming surgery decision, which I just posted in Treatment.  

The strangest thing looking back on these messages...I have no recollection of responding, and of not responding!, and I feel really  dumb about it...clearly I was in a state.  Oh what a process this is.  Reading back, I can see that I have settled and come a long way...that’s encouraging.
thanks for the kindness in your messages and wishing everyone well.
kathy xo

Dora22

Hi. My name is Dora and last summer I was diagnosed with stage 3 ovarian cancer. I feel like like I’m in a daze and reality hasn’t set in. I’ve gone through 2 bouts of chemo with surgery in the middle. I’m now on maintenance drug that is fairly new to Canada according to my oncologist. It’s called Zejula. I’ve just started it 5 days ago so I don’t have much personal information to share except I had nausea and vomiting for the first time today. 

Kathy, I can’t imagine what you’re going through. I’m glad you are able to find the needed support from the group in your area. I haven’t checked out if there’s such a group in my area. This site is helpful though. 

Dora from Alberta.

Fearless - Vol Mod

@Dora22
Welcome to OVdialogue.  I'm glad you found us and hope we can be of some support to you through your journey.  I am truly sorry for your diagnosis. I too am stage 3....C, high grade serous if that's a match as well.  If it helps, while my cancer will continuously recur, I am now in my fifth year and still going strong.  That said, I also have three "sisters" out where I live who were all diagnosed around the same time as me, with the same type and grade of cancer, and all are still cancer-free. 

Yes, that first year is a blur for many of us.  But you're in recovery now with a wonderful new drug that will hopefully help keep your cancer at bay. Zejula is reasonably new and does have some side effects that can be difficult but managed so do make sure your oncologist knows how you're feeling. It can be as simple as just lowering your dose slightly to offset the nausea or anything else.  If you want to learn more about experiences with Zejula just key that word into the search box at the top right of your screen. That will bring up previous discussions on the topic that you might find useful.  

It was kind of you to reach out to Kathydornan when you're in the midst of your own journey. Some days it amazes me how much compassion for others exists in our community here.  

As for support groups, please reach out to Tracy Kolwich at OCC who supports western Canada.  She may know of a group in your area that you could join. You can reach her by private message here at @TracyOCC, or by email at [email protected]  I think she had been doing a fair of investigation with members on the subject of Zejula so may be helpful on that front as well.  

Good luck in your journey. It sounds like you're in great hands with a great plan ahead.  Please reach out anytime this group could be of help to you. And think about joining our live online chat if you're interested and able.  It's every Thursday at 1pm EST. You enter the chat by signing into OVdialogue and then clicking on the Discussion topic, Teal Thursdays...... Love to have you with us.  
  

walkabout

Hi Kathy, @Kathydornan


So good to see your return post and would like to extend an invitation to join us on the 2nd Tuesday of month via Zoom and meet other women from the lower Mainland who have been diagnosed with Ovarian Cancer. Their virtual companionship, experiences and wisdom might make your experience a little lighter- we are meeting tomorrow (April 13th ) at 10 am for an hour- please be in touch via email to [email protected] and she will send the link.if this message reaches you post tomorrow morning and you would like to join us each month, please be in touch with Tracy and your name will be added to the distribution list. We meet for an hour every 2nd Tuesday of the month.

The list of questions provided by our site moderator is excellent and very comprehensive- I could see this list giving you ideas to put together for your next doctor's visit near the end of the month. 

I am so pleased you reached out again and hope you continue to be at ease to talk with this wonderful supportive group on Ovdialogue - one never knows when we just need " a listen" and maybe an encouraging word - I know from experience you will find such compassionate care here. 

And we might meet soon virtually - Diane