How fast did other patients suddenly diagnosed with Stage 3 or Stage 4 start their chemo treatments

TotallySurprised

I'm now about one month on from my Emergency room surprise diagnosis, and I haven't yet been contacted by the chemo team about a date to start chemo. Has anybody else in this group had to wait that long to start the potentially life-saving treatment?  I only saw the gynecological oncologist last week, and I know she said the genetic testing had mistakenly not been ordered earlier, and this is the Canada Day long weekend, etc.   But it still seems to me that a month is a long time to wait when a cancer is this big and fast-growing, so I'm going to try to ring the chemo team tomorrow. I just wondered if others knew of any benchmark-timeline  for starting chemo?  

Strongwoman

@TotallySurprised
  Waiting is tough, isn't it especially when we are afraid of the unknown and potential outcomes.
  I will speak for myself only. I went to ER in early Feb due to profuse bleeding from the anal area. I had no idea what was going on or why it was occurring. After being admitted, receiving a colonoscopy and was deemed stable was I allowed to go home. That was an approx 4 day stay. At that time I was informed I had colon cancer. A week later and CT scan thrown in there, the biopsy showed I had the markers for Ovarian Cancer. The general surgeon then sent a referral on to a Gyn Onc for me and followed me until I had contact with them. In the meantime, I was admitted again 2 wks later for another GI bleed, blood transfusion and pain management. While I was there that time, I was given an appt with the Gyn Onc for about 3 wks out. I received my operation about 2 wks later. I was allowed to recover from surgery and 6 wks later had a follow up. I was then informed I required chemo (as biopsy from surgery results were in) and I was asked if I wanted to start the following week or week after.  I chose 2 wks later and received 6 rounds of treatment 3 wks apart. I finished my chemo, was informed I was NED about 6-8 wks later.  About 3-4 mos after that, I was not feeling well, felt I was recurring, was going to gym, worked full time, was seeing a cancer naturopath and had returned to Oncologist to be informed that it was surgical menopause. I knew in my heart of hearts they were wrong. I had to wait another month or two to see the rising CA 125 levels match with what they saw on CT scan. I believe it was 1 wk later I was given an oral chemo med and encouraged to "enjoy life".  It wasn't until a mos later and another ER visit and hospital stay (3 doctors all in agreeance)that it sunk in and I had to surrender to the "enjoy life" part. I wrapped up my career about 5 wks later. There is more but I hope this helps to paint a picture of approx wait times. Sometimes as frustrating as it is, we have to play the "waiting game" and go with the flow.  It isn't easy and you want to scream at times (do it, it's very releasing) and/or cry due to the frustration we feel and the fear of what we are faced with along with approx times of such prognosis. It is tough and I totally understand where you are at.
  I feel it is totally acceptable to call and ask where you are in the queue or how long they expect to have your results in. Do your best to be kind when asking as the reception are only the messenger and may have to get back to you with an answer. My guess is, if your Oncologist put a rush on it and expressed they were that frustrated with the lack of results thus far, they are watching and pushing behind the scenes.
  I wish you the best of luck when you call and that you receive an appt time soon. Keep us posted, do your best to find things to fill the gaps where you find your mind wandering and sleep/rest when you can.i sincerely hope that this post may help ease your mind in the meantime.
 You are in my thoughts, and keep us posted should you continue to want to share.

TotallySurprised

Thanks for your willingness to share, Strongwoman. It really does help because I've now started noticing how In recent years media stories about breast cancer have become very common, but ovarian cancer truly does still seem to be the "unspeakable," operating in the shadows in both its symptoms and in the silence surrounding it. (Maybe some proof of this is in the fact that you are now the 3rd person who, like me, got a surprise diagnosis while in the Emergency Dept for another issue.)  I am trying to pass the agonizingly long waiting time by doing something productive: I have prepared a 2-page handout based on the recent CBC program about the incredible BC research program that has already produced strong evidence over 12 years and 26000 women that elective fallopian tube removal can prevent many ovarian cancers from ever starting. I'm politely offering this handout to  every woman I come across (and even men, since most of them have women in their lives that they care about). Although understandably startled by the topic and my fervour, almost everyone so far has responded with interest (including a young electrician who came to raise some receptacles for us and whose wife will soon be having their second child by caesarean).  Knowledge is supposed to be power, and so I want to help give others the power of choice that we did not have, unfortunately. 

Strongwoman

That's amazing @TotallySurprised
Have you considered sending it to Ovarian Cancer Canada in hopes of them creating a pamphlet that we can download or they can assist in circulating about it? 
I did read a recent article regarding the elective surgery. It was an interesting read. I wasn't clear from the article just at what age they are proposing this and what stats are re: follow up with those that have had the surgery beyond say 'X' years. I truly have no idea if mine would have been caught or stopped had they removed my tubes earlier. So difficult when it is more 'New' info.
  Yes, there is a lot of hype around breast cancer which is very detectable etc compared to Ovarian/Peritoneal cancer. It is also why I 'stepped it up a notch' when I did our local Hike for Hospice and went full out costume etc with my team. First it was fun and second it brings/draws more attention to it. I have done the Breast Cancer runs and the vibe is high and wanted to bring that vibe to the Hike. I hope it worked, hope everyone steps up their game next year and that it brings more awareness to the programs they offer and how much they help the community as a whole.
  You are doing amazing work. Keep it up!

LUCY_BC

I was diagnosed on April 9, 2021.  First appointment with Oncologist was May 7th and 1st chemo was May 28th.

TotallySurprised

Thanks for sharing your info, Lucy. I guess my delay has not been that unusual, then, but when I know that my deadly, completely unsuspected cancer has been growing every 10 seconds, it seems, every extra day to trying a treatment seems like a wasted opportunity.  I finally saw the "chemo guy" yesterday to discuss my very limited options (my old age--72--plus my late stage--4--with lung metastases, plus comorbidities like 40 years of Multiple Sclerosis (but still  on my feet!), and pulmonary embolism  in 2020, so on blood thinners, etc.  I'm not unrealistic; I know  the odds are already stacked against me, but I told chemo guy to throw everything at the tumour that my body can physically tolerate (at least for a while).   So he's apparently going to start me on Carboplatin  & gemcitabide & Avastin sometime in the next few weeks if my initial blood panels say I could handle that mix. Nobody has yet been crude/honest enough to tell me if my assigned expiry date is weeks/months away, but I'd certainly love to get another 1-2 years, even though I realize nobody can promise me that.  (And I'll  just mention here that I saw one of your posts a while ago  that said  you'd recently been surprised with a very poor prognosis, so I'm delighted to encounter you here and to hear your "woo-hoo" attitude expressed, despite everything.)

LUCY_BC

I have high hopes for you.  Especially since this will be your first rounds of chemo.  After about 3 months, they’ll give you a CT Scan to see if your cancer has reduced in size.  You’re definitely a young woman in my eyes, I’m only 4 years younger.  I’m also guessing you’re on the East Coast, sometimes I can tell by the chemo combinations.  Have you had any debulking surgery?

TotallySurprised

Wow--your chemo geo-locating is impressive. I am in deed on the East Coast (NB). No pelvic debulking possible unless the big  tumours (one is 12cm by 8cm) shrink impressively--and I've also been told there's not much point to pelvic surgery unless the chemo makes the 1 cm tumour in the lung/lymph-node area disappear completely. My genetic testing only got sent off this week, so I don't even know yet if I might have the platinum-sensitive BRCA  mutation that might help initially. So all in all, I'm proceeding by assuming the worst  (but keeping my fingers crossed for some sunshine).

Strongwoman

@TotallySurprised
Hello!  I am checking in to see if you have any updates since your last post.  Perhaps your genetic testing is back and perhaps not.  How are you doing/feeling?  Are you on a current treatment regime?  When you are ready to share let us know your update.  I would be interested in finding out where you are in your journey.

TotallySurprised

Thanks for checking in, Strongwoman. I did finally start chemo (Carboplatin, Avastin, and Gem) on July 27, about 6 weeks after my ER surprise diagnosis of Stage 4b. I completed my first 3 cycles Sept 21 (I had a Day 1/Day 3 cycle of 3 weeks each round, but had some delays/cancellations because my white blood cells regularly went too low. Otherwise my body seems to have tolerated the chemo drugs fairly well, and I feel quite good most of the time (the very first round reduced/"disappeared" a number of my symptoms that had started becoming quite uncomfortable. My CT scan Sept 27 showed mixed results, however: I had a very good response in all the abdominal areas (big tumors reduced by 50% or more, smaller ones disappeared, as did all ascites. However, unfortunately, that's not good enough because the cancer had already spread to the lungs and lymph system by the time I was diagnosed, and the small tumors in these areas shrank some but there are lots of lung metastases, so overall I guess I had a so-called "partial response" at best. I knew when I was first diagnosed that I was obviously terminal, so it was just a case of trying to find our how my new "best before" date compared with that on the yogurts in my fridge (I still don't have a good understanding of this important question, and nobody seems keen on venturing a guess). The lung tumours plus my age (72) and co-morbidity (MS for 40 years, but pretty stable) all mean I'm not a surgery candidate, but they are going to give me another 3 or 4 round of the same chemo combo and then another CT to see what happens anyway.

I recognize I'm very unlikely to make the 3 or 4 year mark, but I would definitely like to get at least another year or two if possible, so I'm trying to find an article I read early on about an ovarian cancer  patient in the Western/mid-West States whose innovative doctor gave her a lung cancer drug when her cancer returned and had spread to her lungs I think), and against the odds, this worked for her.  I thought if I can find out what the drug was, I might ask my doctor if it seemed worth trying on me.  As I say, I'm realistic about possibly only months, not years, but I haven't given up on getting a bit more time if I can.

Oh, and I didn't catch the "luck" on the genetic mutations of me or my tumor that might have improved the "responsive odds slightly for up to 3 years. Not BRCA positive or HRD positive.

So that's where I stand at present: resigned  to a fate I still don't quite have a timeline on (but not giving up).

Terry

Hi Women,
My name is Terry- I am new here. A friend referred me to your site when I was recently diagnosed with Ovarian Cancer.
I presented with a left supraclavicular node that was biopsied and undifferentiated serious cancer was found. After much review including out of province assessment of the tissue and blood stains-- it was determined that ovarian cancer metastasized to my supraclavicular lymph node- stage 4. Does anyone have any experience with the supraclavicular node mets and surgery of the node?
Best to All,
Terry

Strongwoman

Hi Terry.  Welcome to our group and thankful that your friend referred you here as well.  How are you doing with your diagnosis?  Have you received any direction as to where things are headed for you as far as treatment, surgery etc?
  I have not had what you are going through and suggest typing in the search bar :"mets lymph nodes" or "mets and ovarian cancer" and see what comes up on previous threads.  Basically any key word variations to see if there are previous threads addressing your specific question. 
  If you have not already, there is a link on this site to a book that is in pdf or written form that is FREE on Ovarian Cancer and all that comes with it.  Not to overwhelm you but to provide some info for you when you are ready, there is a weekly Teal Thursday online chat (typed text not Zoom) every Thursday at 1pm ET.  There is also a Teal Tea every 3rd Tuesday of the month that you can join should you wish.
  Basically, we are here when you need us and to ask questions that one of us may have an answer to.  This site is also a place to ask for links to various resources etc should you not know how to find them.  The ladies on this site vary from newly diagnosed, to chronic (meaning recurred and in various trials or treatments, to NED (no evidence of disease) to being informed one is palliative and end of life trial and tribulations.  It is a safe space and we do our best to assist everyone with issues that are present based on our past experience, knowledge or mishaps.  I hope you find this site both useful and a place to vent from time to time if needed.
  As far as the nodule surgery, my best guess on it is that it would be similar to breast surgeries and the lymph nodes in the area.  I imagine that you would be guided to after care and things to watch post surgery.  Kindly let us know if there is something more specific you are looking for so that we may be able to assist you better.
  Again, I am thankful you found us and have reached out. 
Take care

Terry

Thanks Strongwoman! The supraclavicular node mets of ovarian cancer is apparently rare. It is hard to find info about debunking surgery. It is apparently quite difficult in this area by the neck. One oncologist says they can have this done- my other oncologist says it can't be done. I want to know if anyone has survived ovarian cancer with supraclavicular node mets for more than 18 months and if anyone has had a successful surgery of the supraclavicular node. Any help with info would be greatly appreciated.
Warmest Regards,

Terry

Strongwoman

@Terry Your welcome. Sounds like you are sitting in an in between situation. I do not know off hand anyone that has had this done. Ladies pop in and out of this group so perhaps someone may have. Has chemo come up as an option either before/surgery/after OR chemo alone OR surgery/chemo?  
  The question you are posing must be difficult for you. A do I or don't I and what do the outcomes look like for both. If you mind sharing, what do you feel you are leaning towards or do you know?  I will say that for myself, I base and have based most of my own decisions (after receiving as much info as I can) on quality of life. Meaning what does that mean to me and what will choice A look like compared to choice B or do nothing.  They are tough decisions to make for sure. We are here to support you through it all.  There will be mental, emotional and physical parts to all of it.  There are a lot of resources out there so please let me know if you need any links to anything.  You may also send me a private message if that is preferable for you.  
Take care of you and I am thinking of you as you face this.

Strongwoman

@Terry  I thought I would check in to see how you are doing and where things are at.  Have you had any appts and/or treatments/surgeries since your last post?  Would love to know how you are doing and what they ended up saying is the best course of treatment for you.  How are you doing mentally/emotionally as well?  Thinking of you. 

Strongwoman

Good Morning @Terry It has been awhile and I am very curious about your journey and what is going on with it.  I would love to hear how you are doing in general as well.  If you can post an update as you had some unique health issues going on that it would be good for the community to hear about it.  It may even help someone else who may have something similar to yourself.  Looking forward to hearing from you soon.
Take care