Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).

Babs272 cancer back again

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  • Bojenka
    Bojenka
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    @Strongwoman
    I like wide variety of movies including period pieces also.  I will check Gifted Hands, thanks.
    Did you see New Amsterdam ?
       
  • Strongwoman
    Strongwoman Moderator
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      Thank you, for the recommendation. My Aunt also mentioned that New Amsterdam was good.
      I have enjoyed many shows, Working Mom's, The Good Wife, The Good Fight, Downton Abbey, Outlander, Schitts Creek, Sweet Magnolia, Ginny & Georgia to name a few series and Heartland.
      Movies, I feel anything with Melissa McCarthy in it, Wine Country was good.
    I read the book and started the movie of Where the Crawdads Sing. I enjoy Pride and Prejudice and when I was in hospital I watched finally Breakfast at Tiffany's.  My taste is wide and varies depending on my mood.  Still trying to find a good comedy series again. Haven't quite found what I am looking for yet.
      I read a lot as well so I tend to get lost in something one way or another.
      Maybe there will be something in my list you might enjoy. Send any recommendations you have. 
    Take care
  • Petra
    Petra
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    @Strongwoman

    I just wanted to say how much I appreciate you and what you provide for this community in your role as a peer support volunteer. I've read many of the discussion threads, and can see how much time you put into responding to each and every discussion.

    I particularly want to let you know how much I admire and appreciate your choice to do what you can to normalize death, by writing so clearly and transparently about your journey, your current treatment options, your plans, your thoughts and feelings, and about how you're approaching this phase in your life. 

    I am at an earlier stage of the ovarian cancer treatment journey, and don't yet know what my path will be, but I find reading your words very helpful as I reflect on the possibility of an earlier death than I had been anticipating.

    [Context: I was diagnosed with HGSC in Oct 2022, initially staged at 3C,  then "upgraded  :/" to stage 4B after a nodule was found in my spleen. I had three rounds of neo-adjuvant taxol/carboplatin, then debulking surgery - which went well, no residual disease - and am now in the adjuvant phase of chemo, 4 more rounds to go.]

    Prior to this diagnosis I thought I had accepted death as an inevitability, and thought that I was at peace with it. Turns out that I was at peace with it because I thought it was way off in the future. As soon as I got the diagnosis and looked at the outcome stats, I felt overcome with absolute terror. 

    I have since done a lot of reflecting on the reality of my own death (whenever it happens to happen), and have spoken about it with my partner, my adult kids, my friends, even my colleagues, and in those conversations, became aware of the discomfort many folks have with the subject (understandably, for so many reasons). The current North American culture compartmentalizes death in a way that doesn't help us deal with it as an normal aspect of living. 

    What I think that what you are doing by talking so openly about your experience is opening the door to conversations that could really be helpful, and you're also helping all of us feel less alone as we face something so scary. 

    I for one have benefited greatly from your comments, and I just wanted to let you know that.  <3

    Much love to you as you go through your days.
    I admire your spirit so much. 




  • Bojenka
    Bojenka
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    @Strongwoman

    Hi, I wonder if I can ask your opinion. For a week now I have been having pretty severe right flank pain. I reached out to my oncologist who is scheduling a CT scan in the meantime they gave me Tramadol for pain.  For a couple of days the Tramadol gave me relief but it doesn’t any more.  Other than GP and oncologist is there anyone else to talk to about pain management ? 

    I started watching Ginny & Georgia, very cool show :) 

  • Strongwoman
    Strongwoman Moderator
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    @Bojenka
      Yes, I can answer that the best to my ability.  I think you should contact your Oncology team and/or your family doctor and let them know it is not working.  You might want to ask when you are speaking with them if the Tramadol is a short acting or long acting one.  I did not know much about pain meds until recently.  I am now on a long acting one which lasts 12 hours and is slowly released through the body during that time.  I have short acting ones that I can take in between should the long lasting one not be working as well at managing my pain.  That is an example between the two for your reference. So, if you are unaware which one you are on, it is time to ask.  Alternatively, you can mention, that you do not feel the Tramadol is working as effectively as it was and inquire about another pain medication.  It will depend on your case history, etc for the team/doctor to determine what to put you on.  There is a lot in their arsenal of pain medications that I doubt you are out of options at this point in time.  It is worth a phone call to get some answers especially if your pain is not being managed.  It is one thing that they do want under control.  As for speaking to anyone else about pain management, I am not sure what you mean by that. Can you elaborate more on that and what you were thinking when you wrote it. I can then better understand and may be able to offer some suggestions. 
    The other thing to remember with pain medications is that they can be stool hardening so it is important to discuss ways to head that off with your team as well.  I take Restoralax daily mixed in with a powdered veggie green supplement to assist with mine.  Some do well on Metamucil alone and some take Senokot.  Restoralax pulls moisture in via osmosis and Senokot is what helps make the motility (movement) occur in the bowel to move it along and out.  
    It is important to understand the roles of each.  Some come up with their own cocktail of what to take with the guidance of their team. 
    Without knowing when your CT scan is, I do think this is the best way to handle things at this point for yourself. Let me know how you make out once you have reached out.
    Take care and chat soon,
  • Strongwoman
    Strongwoman Moderator
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    @Petra
      Thank you...a thousand times thank you and I truly mean it.  I had tears in my eyes when I read your post. I was doubting myself and what I was writing and asking myself if I was doing it for myself or for others.  A bit of both, I believe but truly do want to help others out there.  
      There is so much that goes along with this disease and it does not matter whether it is your first, third or gosh knows how many recurrences that you are experiencing.  What is real are the emotions that you feel that go along with it.  I have searched and searched and have come up empty handed when it comes to this part of things.  I know what I, myself, am facing and struggle to find the appropriate material to help me through this.  I find it goes to recurrence, they talk about palliative care and its role and then bam....right into end of life and last stages of what you will see.  There is nothing in between.  I am not sure if it is due to others not sharing or some not being able to know how to vocalize what they are feeling and experiencing or some don't get a chance to.  Whatever the reason, I am thankful that I can do this and that I can leave some nuggets of information for others as they go through their own journey.  You are right about talking to others about this. I learned this weekend that as my hubby sits through his denial stage that he isn't talking to anyone about it.  I am thankful I speak to his friends and will be letting them know when I get my results and where we are headed next so that they can support him.  He can't do this alone and he needs to speak to someone about what he is feeling.  I watch and know inside what he is going through especially as I support a friend whose partner is going through cancer and listen to what they do to 'get by' as I would not say it is a healthy way of 'handling things'.  I can see in this person, some of the things my hubby will do at some point in time as well.  I have my own emotions to go through and know the talks I have coming with my hubby and boys first, my elderly Aunt and my parents.  Then from there it will trickle down.  Yes, I am the inside of the circle and need the support but because I know more medically than all of them, it is hard to be that centre all the time.  Emotions are hard at the best of times let alone at times like these. I do my best and juggle my balls and continue to parent as I go along. I made sure hubby had a wonderful birthday on Saturday and that it will be memorable for him.  I have chatted with my youngest and my next task is, getting him to choose a dinner item to make one day a week and I will walk him through making something. That way, I am not doing all the work (I do enjoy cooking and baking) and he is getting the best of me while he still has it.My oldest, I am still working on why one wants to be cleaner than he currently is.....believe me....it's a hard task but I am keeping at it.  Those are free and shareable things and if you really want to look at it 'gifts' for them all. 
      I am happy to hear you have initiated some conversations and that you find some solace in what I write. It is the quality of life that I want until this disease takes it from me.  I would like others on our forum to be open about how they feel on any given day especially if it is sad, anger, unexplainable feelings as we face our own challenges.   Even as I face this next phase of things I keep coming back to that phrase from the fictional book entitled "Under the Whispering Door" --'It's never enough, is it? Time. We always think we have so much of it, but when it really counts, we don't have enough at all."
    Such profound words for all of us to consider.  The question remains, what will YOU do with the time you have?  What do you want it to look like? Who do you want to share your time with? All I know is that it is precious and I am as well so I choose to surround myself with those things that bring me joy as I don't have the bandwidth or space for anything else as the sands in my hourglass keep falling through.
      I wish you the best on your journey and when you are ready to share, kindly do as I would like to walk beside you in your journey. 
     Thank you again for your words in your post, they truly warmed my heart.

  • Bojenka
    Bojenka
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    @Strongwoman

    Thank you. Good point.  
    It takes a few days to speak to my oncology team, and sometimes
    2 weeks to GP.  Thanks to OVC and all of you I can reach out and ask questions. I am grateful for this forum.
    In the meantime I will ask the pharmacist if the Tramadol I have is short lasting. I am to pickup new prescription in a couple of days (pharmacy had to place order) and that will be slow release .  
    All of this is new to me, as I am first in my family to have cancer or serious illness for that matter.  

  • Petra
    Petra
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    @Strongwoman

    Yes, I do find solace in your words, and I really appreciate the bread crumbs that you are dropping on the path for the rest of us to find as you forge ahead into this phase of your journey.

    I don't know that I would have ever thought about it this way prior to this diagnosis, but I've since come to see it as a gift that this disease does give many (but not all, I know that) a fairly long time to prepare, and I think that your words will help many in that preparation.

    I appreciate you so much for your courage in sharing, and regarding your wondering about whether you were sharing for yourself or others, I think that even if we are speaking our own particular truth, we are at the same time speaking for the collective. Everyone's story will be different, but the general themes are the same. You are giving us all a gift by sharing your experience, your thoughts, and your feelings as you go through what you are going through. It is a generosity on your part to be extending yourself in this way.

    Regarding conversations with others, it is indeed interesting how differently we all process and cope.

    I've discovered that my partner is happiest when I seem to be in good spirits and is quite uncomfortable with any talk that isn't of the "we've got this!" variety. He seems to believe that if you let in a speck of fear or doubt it will manifest as a bad outcome. He gets afraid when I'm not in a positive frame of mind about it, and I have to say, that makes connection on the topic quite difficult. My parents seem to be in frank denial, and cannot seem to wrap their heads around the idea of recurrence. 

    Meanwhile the youngest of my kids (21) flew home the minute she heard the news so that she could spend every minute of the treatment with me, in case things didn't go well. She's also the one that said that the idea of losing me is making her understand how much she had been relying on me as the be-all-and-end-all guide in her life, and that she is recognizing that she could start learning how to rely more on herself as preparation for the time when I won't be around, whenever that might be.

    We're all so different.

    I love that you're spending such concrete and practical time with your boys. 

    And I would love it if you keep on writing here about your experiences. I for one will be an avid reader. 
    Also please know that if you don't feel like writing, that's okay too.
    I am with you in spirit, even though we have never met. 
    As you say, nobody walks alone.


  • Bojenka
    Bojenka
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    @Strongwoman
    Thinking of you. Seems that’s been a trying week for a lot of us.
  • babs272
    babs272
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    Need a new oncologists. Is it possible? My oncologists made me feel worse today during our appointment. I am not sure what new chemo I will be having  next week. She was going to get back to me after thinking on it. Hughhhhh!
    I want answers. I hate the waiting game.
  • Strongwoman
    Strongwoman Moderator
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    @Bojenka
      Thank you!  How has your week been? 
    @babs272
      Waiting is very difficult and our minds wander to places it should not creating scenarios that are usually not good. It's natural but can be very unsettling for us. Attempt to find an activity to 'quiet" your mind...like a walk, yoga, tea/coffee with a friend, go for a drive, change of scenery...these are all things that can sometimes help us in getting out of our funks.
    What has you so upset you are wondering about switching Oncologists? The fact that you don't know what chemo 'cocktail' you will receive next week or did something else occur?
    This weather has NOT been helping anyone as far as mental clarity with all the grey and gloomy weather we have been experiencing (in Ontario).  Seems Mother Nature is having another tantrum today!  Finicky little witch she is! 😉
    @Petra
     How has your week been?
  • Petra
    Petra
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    @Strongwoman
    I've had a decent week. Currently on day 11 of chemo round 6. 3 more rounds of chemo to go.
    I had 3 rounds of neo-adjuvant, then surgery, and now in the middle of the 6 post-surgery rounds.
    I found this round the toughest so far to recover from - side effects lasted longer, and I'm more tired.
    My body has been doing a great job of recovering each time up until now, but I think the cumulative effects are starting to take hold.
    I'm expecting that the last 3 might be a bit rough, but thankfully only 3 more to go (for now!)

    I had 2 ER visits in the last couple of weeks for tachycardia and chest pain - EKG and heart enzymes normal, so not a heart attack -  but BP and HR significantly elevated - pulmonary embolus ruled out, infection ruled out, so diagnosed with presumed pericarditis and now scheduled for an echocardiogram. The elevated BP is likely from the Avastin, the chest pain is presumed to be a symptom of the pericarditis, but they're not sure what to make of the elevated heart rate. Whatever it is, I sure hope it's a temporary side effect that clears up once treatment is finished because having my heart pounding away is really uncomfortable and kind of scary. 

    On the very good news side of things, tissue testing of my tumor showed a somatic BRCA mutation!!!!!  My germline testing had been negative and I knew there was only a 3% chance of there being a somatic mutation, so I wasn't expecting that result, and when my oncologist told me, I was beyond ecstatic. It feels to me to be the best possible scenario. My kids don't have to worry about a risk of inheriting BRCA and I get the benefit of having cancer cells that are more susceptible to treatment. 

    I was initially staged at 3C but am now considered 4B because there was a nodule IN my spleen. So everything still remains to be seen. 

    I think that one of THE hardest parts of this has been living with so much ongoing uncertainty - is chemo going to work? What will happen during surgery? Will they get it all? Are there still rogue cancer cells floating around in my blood stream? Will this phase of chemo mop them all up? Or not?
    Along with the biggest uncertainty - the future. When I was diagnosed and looked at the outcome stats I thought that this was it. My life was over. But treatment so far has gone really well. And now the great BRCA news. Raising the possibility that I might be one of the incredibly, incredibly lucky people that get stage 4 ovarian cancer and go into "durable remission" aka "cure". That this is still a possibility is something I didn't think would be possible. I find myself not knowing how to feel. I'm doing some tentative shorter term dreaming and planning - like taking a trip to see two of my kids this summer, and going to Mexico this winter - but I don't allow myself to think beyond that. 

    Someone, maybe you, on one of these discussion threads, talked about it as living with a chronic illness, and I found this to be a very helpful perspective. If it does come back, it will be treated, and I will go on for a while, and it will come back again and it will be treated, until eventually treatments stop working, but that will be a whole process and will take time, meaning that I will HAVE time, some time at least, and that takes some of the sense of urgency and the fear away. It's not an all or nothing thing.

    I'm just going to live as best I can with whatever life I have. 

    And I guess that's the one of the teachings from this. 

    And you, @Strongwoman, how are you doing?






  • Strongwoman
    Strongwoman Moderator
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    @Petra
      You are BANG on!  The worst part of this is the doubt we all have niggling in the back of our head's about the outcomes. The future and what it looks like for any single one of us is an unknown but if we were healthy do we truly know our future and what it will look like?  There is always something that can throw us off of our desired path and interrupt our plans.  In saying that, I understand and I get it.  It is another 'layer' added into the physical symptoms we go through as well as the emotional and mental.  Bottom line, it is hard.
      I remember them (Oncologists and nurses) stating that it is more difficult in the recovery phase of things the more chemo one gets. Equals not as easy to bounce back and more side effects.  This does not comfort you or minimize your side effects but hopefully will validate that you are not alone in that area.  It is sadly a very real and can be debilitating to oneself at times. The fatigue part is especially hard because our head's want to do things but our bodies deceive us and won't let us.  I feel that sometimes it is for our own good but really we do so want it to work the way we want it to at times! So frustrating! 
      I bet the pericarditis is scary and difficult to deal with. It sounds painful. Is it?  I would also like for you to have your symptoms alleviated once you finish with the drug and hopefully it will be quickly but may be gradual. ER visits are never fun and do take up a lot of time. Sometimes they can be highly entertaining if you are able to find some of the humour of the antics that go on there at times. 
      You are correct that with HGSC there are many options and treatment variations that can be done like living with a chronic disease of any sort.  Yes, the stats when you look at them are frightening, When you look at LGSC it appears that it is more favourable in some regards because of slow growing, outcomes etc but in reality once we recur we have Letrozole and the new drug out Trametinib. Letrozole has less side effects and most that have tried Trametinib have gone off of it due to side effects and my most recent appt with a Radialogist/Oncoligist stated that the Oncologist that prescribed it to me determined I had a toxicity to it when I took it.  Good to know eh?  I always act not surprised and it is amazing what info you can find out from other health professionals about your condition.  Apologies, I digressed. Should either of those not work for us LGSC gals, there are no more options, It does not respond to chemo and unless a nodule is large enought to radiate to reduce symptoms, it is off the table as well.  
     The teachings from this have and are vast from living with it.  I have learned more patience, still learning to ask for help (I suck at this but am working on it), advocating for oneself, educating oneself and what I truly mean when I say I want to 'live' or 'enjoy life'. I, for one, have learned who was actually really a friend and who was not and my gosh is some of that surprising!  I had someone contact me and state "took me so long to reply because I didn't know what to say and didn't want to say the wrong thing."  I don't believe there is wrong thing to say.  One inquires about someone's state, that person replies when they can or are ready, repeat and rinse. What is worse is having those that 'ghost' you because they can't cope.  It leaves one feeling even more isolated and removed from the normality's of one's life pre-diagnosis.  And....it GD well hurts us to the bitter core. If they only knew what their silence and 'ghosting' do to us, perhaps they might be ashamed of themselves.  One of my other friend's was upset when they found out how things are going for me and where they are headed.  I stated to them that it is a grieving process and we start now and grieve as group and support each other through it all. I truly believe it will help those left behind in the end.  Plus I feel it helps "ME".  My Mom and Dad came down on Thursday and brought pictures for me so I can put together my photo albums that I am doing for them.  It was awesome looking back at some of the pics and bringing back memories.  Laughing at some of the things and reminiscing.  Those are the good parts of this and brings us all closer as well. 
       As for me?  Well, I saw a Radiologist/Oncologist on Thursday.  I had assumed that it was going to be a conversation the Oncologist had with them to verify whether radiation was an option for me or not so we knew definitively. I was surprised when I was informed of this appt but I went.  It was a lot of waiting.  Suffice it to say, it is off the table like we (Oncologist/Palliative and myself) thought it was. Too many areas, too small to radiate safely.  They were more concerned about my kidneys and tried to chastise me on my decision I made on not having a nephrostomy. They were shocked to hear I had declined what the Urologist had suggested and questioned me as to why.  I simply stated it was quality versus quantity. Then.....the topper was "what are you going to do when you go into renal failure?"  HA!  I informed them that is why I have a team, that we discuss it at every appt and we monitor my bloodwork and symptoms accordingly. That is up to my TEAM to tell me when we are reaching a point that it is a MUST not a let me think on that.  They were quite taken aback. I would be very curious to see what they wrote in their notes!  Too funny actually.  
    They were concerned about some pain I was having at the appt and was going to inform my team about it. I had indicated they know about it already and nothing has been done.  Bottom line, concerned that my ventral (incisional) hernia may be becoming strangulated.  I asked about what symptoms would be present to cause me to go to Emerg. I have none of them and I feel it was more gas related and my wonderful GI system that is quite sluggish now.  So, all in all, I am okay and accepting of where things are at.  
      Well, gal, I must go now and check on dinner as my male 'sharks' (as I like to call them) are circling when it is getting close to feeding time.  They are so predictable!  
      You have yourself a good evening and do keep us updated on your status.  I will walk along beside you on your journey for as long as I can.
    Take care! 
  • Petra
    Petra
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    Hi @Strongwoman

    Thank you for your detailed reply.

    I'm glad that you have a team that you can trust and rely on. I think that makes all the difference when you're dealing with such challenging symptoms and decisions. 

    In my relatively short time so far with cancer symptoms and chemo and other treatment meds, one of the most difficult aspects has been this weird experience of having a body that suddenly starts having all sorts of new symptoms, and not knowing what they mean and whether they are of concern or not, and I can imagine that for where you are this also comes with a lot of other unknowns. 

    You mentioned pain that might have been bowel related pain. I have had so many instances of pain in my abdomen that I couldn't place and that later turned out to be gas. Personally, I've found the bowel changes one of the worst aspects of this condition, and I totally relate to the challenges of a (for me, newly) sluggish GI system that needs to be coaxed along. And gas pain in an inflamed GI tract is one of the most awful pains I have every experienced, so if that's your experience sometimes these days, I hope it's not too often. When I was in the hospital post surgery, the IV morphine pump made the incision and abdominal pain very easy to handle, but when the gas pain started up, the morphine did nothing for it. I was shocked at how excruciating it was. 

    You sound like someone who has taken a very active and empowered stance when it comes to your diagnosis and the decision making around it. I think that is so wise. Nobody is going to care more about our situations than we do, so it is in our best interests to advocate for ourselves, and if necessary (as in your situation with the radiologist) stand up for our decisions in the face of sometimes shockingly ill-informed and/or insensitive opinions. I was aghast when I read how that radiologist spoke to you, and how they questioned your decision making. How dare they!!!! They're not in your situation and have absolutely no right to question you on the choices that you make re: quality and quantity of time left. 
    Sounds like you were able to put them in their place, but that you were put in that position at all makes me angry on your behalf.

    You are an inspiration to me and I am sure to many in the way that you are approaching things. Not that you need to carry that as a burden, and obviously feel free to vent and have all the feelings. Just know that your words mean a lot. 

    I hope you had a lovely dinner with your fam :smile:




  • maryp
    maryp
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    Hi Ladies, I was on hoping someone has a bit more info on somatic tumour. We had thought my mom who had 75 with stage 4 cancer's genetic testing showed BRCA2 genetic mutation but we found out that the test was just done on the tumor and not a germline. We've been waiting months to hear back about a germline test and no idea when that will happen. We are in Ontario. I wanted to get tested but until we know for sure they don't won't offer testing to me until they know if my mom carries the mutation in her blood for a hereditary risk, or if it's just the tumor. She's now on that parb inhibtor that starts with an O. Is that parb inhibitor better suited for somatic tumor brca? If you had both germline and tumor tested how long did it take for both results for you? 
  • Petra
    Petra
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    Hi @maryp,

    I can give you my experience with this.

    I have stage 4 HGSOC, was diagnosed in late October 2022. In my case, blood sample (germ line) BRCA testing was done at the time of diagnosis - it took about a month to get results - and it came back negative. I have four adult children, two of them daughters, so I had mixed feelings about the result - on the one hand disappointed, because I knew that a BRCA mutation would improve my prognosis. and on the other hand, relieved that I would not be passing the mutation and the increased risk of cancer to my children. 
    . 
    Tissue testing was done at the time of surgery (January) -  it also took about a month to come back - and it came back positive for a somatic BRCA1 mutation. I am currently receiving Bevacizumab (trade name Avastin)  along with the usual carboplatin/paclitaxel doublet for the 6 post-surgery chemo rounds, and will be getting Avastin and Olapararib (trade name Lymparza) for the maintenance phase of treatment.

    Olaparib is the parp inhibitor that has shown greatest efficacy for patients with both BRCA 1 and 2 mutations, regardless of whether they are germline or somatic mutations. Clinical trials using Olaparib for maintenance treatment have shown significant improvements in progression free survival times (PFS) compared to patients with BRCA mutations that receive a placebo, as well as increased outcome survival times (OS). 

    The way I see it, it was the best possible outcome in terms of BRCA.
    I felt exceedingly lucky to be in the very low percentage of patients with ovarian cancer to have a somatic BRCA mutation (in the order of 3-5%). And very happy to not be passing a deleterious mutation on to my kids. I get the benefit of the BRCA sensitivity to treatment and my kids don't have to have BRCA in their DNA.

    I can't speak to the testing situation in Ontario, as I am in Manitoba.

    Not only was I offered the the blood test and the tissue test, I have also been referred to genetic counseling to help me to understand the results. At the time of the counseling, they will review my family history of cancer and will likely offer a genetic screening panel and further consultation once those results are in. It's going to take a while to move up the queue for the genetics consult, but I'm grateful for it having been offered. 

    To the topic of germline testing: From my reading, and in discussion with my very knowledgeable oncologist, it is very unlikely for a person with a somatic BRCA mutation to also have a germline mutation. 

    That being said, I can completely understand your desire to find out whether that is true in your mom's case. If I were you, I would be wanting to know for certain about that as well. And I'm surprised that the blood test wasn't done, as it seems to me to be standard of care these days for advanced ovarian cancer, given that the percentage of patients with BRCA (or other HRD mutations) is quite high, and given that treatment decisions would be affected by that information.

    However, now that they have the somatic tissue results for your mom, the oncologists would not be incentivized, from a medical or treatment perspective to do the blood testing on your mom, as the results would not affect their treatment decisions. She would be getting Olaparib regardless of whether it was germline or somatic.  

    The blood test results would really only affect you and other family members. 

    There are labs that you can pay to do genetic testing - something to consider if it that is an option for you financially, and if you can't get the province to pay for testing on your mom. 

    I don't have any links, but if you search genetic testing Ontario in google you will find private lab options.

    I hope that info was helpful, please feel free to ask questions if I missed anything.

    I hope treatment is going well for your mom. How is she faring?

    Petra









  • maryp
    maryp
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    Hi Petra. Thank you for sharing your story and info. It's a bit confusing for me with regards to what one clinic is saying vs mount sinai. At the clinic there is a note stating my mom is positive both somatic and germline but the genetic people at mount sinai who have the test results say otherwise, but when i scroll through the test I see that there was a blood test done as well and it says positive, so now i'm left wondering if those who work at the hospital are reading results correctly. I mean, I have no idea what to believe. It's just a roller coaster of emotions because I thought maybe we don't have to worry about hereditary stuff but now we likely do. Le sigh. :)  
  • Petra
    Petra
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    @maryp
    That sounds both confusing and frustrating, and like you're going to have to keep digging and pushing to get those different messages reconciled. 
    Hang in there, and keep advocating for yourself. If you keep at it, you will get the answers you need and hopefully the testing for yourself and other family members if your mom does have a germline mutation.
  • maryp
    maryp
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    So I got an answer. My mom does have the BRCA2 germline and somatic tumor. Combo deal. I have the bloodwork up form now and will get my blood done tomorrow and I will get a follow up from the hospital in 3 weeks. If i have it I'll then take out my ovaries and tubes. I'm perimenopausal. At least it's a piece of puzzle that is answered, sort of. I wish all people with ovaries could get tested, so we can help to prevent this cancer from taking root in our bodies. 
  • Petra
    Petra
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    @maryp
    Thanks for the update. 
    I'm glad you're going to get your results soon. Fingers crossed it turns out that you're negative for BRCA, but if it does come back positive, it's good that you have the option to have the surgery. 
    Agreed on the wish that everyone with ovaries could be tested. 
    Maybe some day...
  • Strongwoman
    Strongwoman Moderator
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    @babs272
      I know you were not able to join the chat yesterday. Thought I would touch base and see how you are doing the day after treatment. If you would like to share your update, I would be happy to read it and learn to see where you are at and how it is going for you.
      Take care
  • babs272
    babs272
    Options
    Hi strongwoman, I am doing good. Had my doxil and avastin yesterday with ice packs to help with the hand and foot syndrome and the pain. It helps alot. I feel so much better, no more laying in bed for days after treatment like I was when I was on carbo/taxol. That was brutal. I have be'en on chemo since end of Feb. 
    My garden is growing well. Eating zuchinni, cukes, and beans this week. Lots of tomatoes coming. Just have to ripen .
    Ultra sound went good on my thyroid. They were going to do a biopsy again but since there was no change , we decided to wait a few more months. I had it done in Dec and it was unclusive, so why do it again when it may come back the same.
    We have 2 grandkids over night, almost 12 and almost 9 yrs old. They keep me active. Might go for a walk before it gets too hot.Temp. to get to 29/30 today. We have had more hot weather these past summers than rain, for BC and alot of forest fires .
    I hope you are doing well . Barb

  • Strongwoman
    Strongwoman Moderator
    Options
    @babs272
      So glad to hear you are bouncing back better than you were after treatment. Sounds like your regime for the hand/foot/mouth is helping as well.
      Sounds like your garden has been bountiful. That is wonderful. I go to a market that is mainly Mennonite and buy my produce for the summer. We had our first basket of early cucumbers last week.
      So wonderful you get time with the grandkids again.  I am.spending time with my youngest son today (18). He is currently getting his haircut. We think we are going to make pizzas for dinner together.
    We are off to buy my elderly Aunt some flowers after this. She was involved in some sort of road rage incident yesterday and I want to Check on her and bring her spirits up a little.
      Yes  I saw rhe fires were burning again out your way. I do hope you stay safe from.them and the smoke as well.
      Enjoy those grandkids and have fun

    Chat soon
  • babs272
    babs272
    Options
    Thankyou. The fires are farther away from us bus our concerns is the smoke and air quality. My allergies have started to act up more.  Getting ready for a hot day with the kids today. Feeling pretty good after chemo. I am not complaining. Enjoy your day.

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