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Fearless

@cbot so glad you joined us today. How are you feeling after your disappointing news. Anything you'd like to share with our gals today? I know you did earlier in one of the discussion threads. But if you don't feel like talking....just be. We're all here for you whatever you need. 

gaylestorm

I have a huge big question about anxiety and dealing with prognosis.  Is this a question appropriate at this time for this site?

Readersmaven

@cbot and @Fearless - Vol Mod I did icing last time and will do again if I am having a recurrence. I've heard about taking b vitamins and plan on asking about that. Fingers crossed all its good,  but this is what we all worry about. 

KarenBemi

@Readersmaven, I had neuropathy from day 1.  Mine did improve overtime but I still have it in my feet...more specifically my toes.  when I wake up in the morning and step on the floor, it is very ouchie.  But it does diminish.  Then I am just left with the numb feeling in my toes.

albertan

Hi ladies!Has any of you had second opinion at any point and how would you go about that?

cbot

Hi @Fearless - Vol Mod. Thanks for your support. As I shared in the other discussion thread, I finished first line chemo on Sept 24 - was so happy to be over that hurdle! Unfortunately, the CT follow up scan shows possible progression of disease. There is nodularity and edema in the pelvis suggestive of metastatic peritoneal disease. My oncologist is not sure, as the images don't appear as bad as the radiologist suggests. She wants me to wait 2 months and repeat the CT scan. If progression is confirmed (platinum resistant), I will probably need to go on next line chemo right away. Having a hard time with this, as I was hoping to experience at least a little bit of NED (no evidence of disease). I hope this news doesn't cause undue anxiety to some of our newer participants - please remember that every one of us responds differently to treatment.

Fearless

@KarenBemi take your time. Jump in whenever you feel comfortable.  There is a big lag between comments so the site can be a bit awkward.  
@kattie666 and @Readersmaven I know the feeling of trepidation every time you get tested and pray for good news. Sometimes it is and sometimes it isn't unfortunately. The nature of this disease is it's unpredictability.  All you can do is hope for the best but stay vigilante relative to any warning signs of recurrence and communicate regularly with your medical team.  A recurrence, as I said in an earlier post today, doesn't mean the end of the world.  I know gals who've recurred and then totally stabilized.  One who recurred three times and now is stable and has been for several years.  And of course the lucky ones...NED after first line treatment and still that way 20 years later.

Don't ever lose hope. I'm, after almost two years on a clinical trial, suspecting the drug efficacy is diminishing.  But, while it annoys the heck out of me to think I still haven't wrestled this disease to the ground, I have the ultimate confidence in my oncologist and her never ending bag of tricks.  Today there is so much new and more and more coming all the time.  

KarenBemi

@kattie666 - I remember my very first follow-up.  I almost made myself sick because of the anxious feeling.  Just keep breathing.  it will work out

Fearless

@gaylestorm absolutely tell us about your concerns. That's what this chat is all about.

KarenBemi

I do have one question?  So I am coming up to 6 months from my last treatment, I have seen my Dr twice already since then but, she hasn't done any bloodwork or scans since before my last treatment.  Is this normal?  I am not sure.

Readersmaven

@Fearless - Vol Mod.. good to remember that we can battle on! Thx for positive thoughts! 

albertan

Just a bit of rant..I am frustrated with my 'team', specifically not being able to see my oncologist .I thought I was going to see her on Mon.(I was told" dr X reviewed your symptoms/concerns and will see you Mon".)Imagine my shock when I learned she wasn't even there that day and had to see resident.I was very upset and am thinking of changing a doctor who can see me once a month or at least every other visit. I got examined and am having a test next week to investigate one of the symptoms.

CountryLiving

Hi @KarenBemi I too am 7 months from last treatment. I was so anxious for my 6 month appt but i was NED!! I had a CT scan a week after my last chemo and will have bloodwork every 3 months. I only had appts with Dr at 3 and 6 month post.. one was video due to covid.

Fearless

@KarenBemi Your question is a common one. It seems surveillance practices differ from province to province, center to center and doctor to doctor.  What is common is a general check up. Some with CA125, mostly I'm hearing without.  Remembering that the CA can be quite unreliable, most oncologists seem to measure your general health and if they see any warning signs then they start with a CA. If over a few months that's trending up and over the 35 mark then a scan is generally in order. But if you would feel more secure  having blood work, ask your doctor to have it done.  It's times like this where we often need to advocate for what's right for us, not just physically but to satisfy our emotional needs.  If he/she says no, then ask for an explanation. That alone might help put your mind at ease that you're being appropriately surveilled.  

KarenBemi

@albertan, I love a good rant.  One of the things I learned this weekend at the Symposium was to become your best advocate.  If you don't like something.  Say Something.  If you are not being helped...find someone else to help you.

albertan

That's right @KarenBemi

Fearless

@Readersmaven we're hearing your "rant" more and more these days. Covid itself has put a big strain on resources, as has the number of gynecological oncologists to every patient....sad to say but we're all living longer so that means not only treating active patients but monitoring so many more of us that are surviving.  Frustrating I know. I've been very lucky being on a cinical trial for close to two years that's allowed me to form a close relationship with my oncologist and a trial requirement that she has to see me monthly. I told my husband the other day that my biggest concern if the drug is not working any more is not what the next treatment might be but the loss of intense surveillance I'm under.  

KarenBemi

Thanks @Fearless - Vol Mod  .  I have certainly been getting the "Physical" exams.  Last time it was twice with the stupid contraption that every women hates.  (They saw some scar tissue so they wanted to do a biopsy.  They were pretty sure it was just normal post surgical scar tissue but...  It did come back negative.)  And she told me that I would getting an exam at every appointment. 

gaylestorm

here goes.  I have just completed cycle 4 and had my second surgery.  First one prior to chemo for tumour and ovaries and fallopian tubes and last one for omentectomy.  The pathology report shows omentum had large non responsive to chemo tumour.  I am a planner.  I like everything in order, just in case.  But being realistic and planning makes me super anxious and not in the present. I just what Im asking, is what works for others?  And second question.  How much to tell grown children?  

CountryLiving

@albertan my oncologist has a resident. They are a qualified doctor who is being supervised under my oncologist. I take that as a good sign as residents will be knowledgeable on the newest learnings and usually the oncologist is associated with a university.

albertan

Hi @Bluebird Thanks for your perspective/experience in AB.I realized my expectations about 'team' are not unrealistic.Hope you're doing well.

cbot

Hi @gaylestorm. I can relate to the issues and concerns that arise when it appears that the disease may not be responsive to chemo. I just received this news recently myself and am still trying to process it....

Fearless

@cbot I take I take it you don't know what next steps are yet?  While it's not pleasant to know your cancer is not totally gone, treatment doesn't necessarily have to start immediately. If you're feeling well otherwise, ask your oncologist if there's any risk in taking  a breather before you start back on something.  A friend around the corner just finished a yea of Avastin, feels great but only to find it didn't work. They were doing to get her into some other form of chemo but when she asked if there was a risk to her longevity and possible eventual cure if she delayed  until the new year and enjoyed how she was feeling now, she was told no....just to let them know if she started experiencing any discomfort. Otherwise a breather was just fine and wouldn't jeopardize anything. Every case is different of course but it might be worth raising. 

KarenBemi

@CountryLiving - No video or phone appointments for me.  All Physical because Gyne-oncologist is planning on doing a physical exam every-time.  

albertan

Thanks @CountryLiving for your insight

cbot

Thanks @Fearless - Vol Mod. I consider this 2 month period before my next scan to be a bit of a breather. Then the oncologist will discuss next steps. It has crossed my mind to ask for a longer breather instead of plunging into more chemo. It has implications for my return to work, however - I don't want to return, only to have to go off again shortly after. Lots to think about.

KarenBemi

@gaylestorm, i can not offer you any insight.  Just my thoughts and well wishes.  The one thing to remember though with making plans.  They can change and be adapted as necessary.  

Fearless

Quick comment on the questions about getting a second opinion and how much to tell adult children. My own experience....just ask for  second opinion. Generally your oncologist will be happy to have their recommendation validated and if not, entertain any options they haven't considered. I 've never been turned down nor have any of my doctors seem offended.  
As for adult children that's a hard one. My son is 33 and my best friend, added to which he's a brilliant analyst and made me promise never to lie to him about my condition. So right from day 1 he was my investigator and who I learned most from in terms of my disease. And as I promised him, I call him immediately after every test, scan, appointment. That said, one of my dear friends has a son the same age and can't deal at all with her illness. He just doesn't want to know anything unless absolutely necessary. I'd just suggest a sit down and talk about how much they are comfortable with and want.  

Fearless

Makes sense @cbot, other than my recommendation that you do what's right and best for you. The work situation will have to accommodate. Don't let that dictate what will make you happiest and most comfortable.  But good that there is a gap before any decisions are made about next steps. Who knows what new trial might be out there or drug approved.  If I had been diagnosed a month earlier than I was I would have missed the trial I've been on. That said, your oncologist is the best guide.  Too often we hear recurrence or that something didn't work and automatically believe the cancer is growing by leaps and bounds.  When they spotted my recurrence the three new tumors were a millimeter in size. Three months later they were still less than a centimeter when I started treatment. 

cbot

Thanks @Fearless - Vol Mod. I can add to your comments about second opinion and adult children. I got a second opinion, which confirmed that my first line treatment was the accepted standard of care, so even though it may not have worked for me, I was at least following accepted protocol - I will probably seek out a second opinion again about next steps. I also am fortunate to have a 30 year old son who has been by my side all the way. I have a 27 year old daughter who is less able to handle the particulars, but is still generally supportive. I have tried to be as up front and honest as possible with both of them.