Let's get started! Come and introduce yourself

Woody

Good evening. My name is Carol and I am dealing with stage four ovarian cancer since November 2020.  After a major surgery and my third treatment of chemotherapy I am joining this group for knowledge, understanding and possible resolution to some of the questions/experiences that I have and am dealing with. Hopefully through members’ knowledge it can relieve my anxieties and assist me in my journey.

battleoflife12018

Hello Woody
I was in the same boat May 2018. I am doing great right now. Only required one round of chemo. Had a temporary ostomy, which was reversed in Nov 2018. 

How are you doing?
Sharon

Fearless

@Woody (Carol)
So sorry a diagnosis brings you to us but very glad you decided to engage with the community. I do believe you will find being among those who "get it", who have or are "walking in your shoes" will be very helpful.  We are almost 800 strong these days, representing all types and stages of OVC and all provinces across the country.  Use us for education and information or just a sounding board as you feel the need to reach out with anxiety or sadness or anger, all emotions that are normal.  And do please share your successes, even the wee ones. We're here to celebrate with you too.

But first allow me to guide you to Ovarian Cancer Canada and it's website. https://ovariancanada.org.  It houses a wealth of information that might prove helpful in better understanding the disease and what you can expect; everything from stories to videos to updates on research progress.  And if you haven't already, order the booklet By Your Side.  It's a very valuable guide through first diagnosis and first line treatment.  You can order it soft or hard copy. I happen to have both, finding the hard copy always at my fingertips for reference.  https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources

You may already be aware but OCC has been running a speaker series on the Zoom platform this year.  Videos of the first ones are located on the website and we have another upcoming on April 21 at 7PM EST.  It' s a tough topic, especially for one so recently diagnosed, but you might find it valuable. And on May 9 OCC will be holding a day long (11 am EST to 4pm EST) symposium.  Our last one was a 2.5 day virtual affair back in September and our members are still talking about how valuable it was to them.  The links to register for either or both are posted as Discussion topics here on OVdialogue. 

Carol, I can tell you the advances in research and treatment for his disease since I was diagnosed are amazing and so very hopeful.  I was diagnosed in early 2017, stage 3C high grade serous.  Surgery and 6 cycles of chemo left me cancer free by that fall.  I did recur unfortunately in late 2018 but at the time of a new clinical trial of the drug Olaparib, a PARP inhibitor, and was offered the options of chemo again or the trial.  Since recurrence had been caught very early and I was at little risk, I opted to join the trial and luckily the drug worked for me for almost a full two years before my cancer began to progress again. This time I am almost finished my chemo, again with very successful results and happy to say I am in my fifth year of survival having beaten the odds I was given....and I'm still going strong.  For others, first line treatment does the trick.  I have friends, diagnosed with the same type and stage at the same time as me and they are still showing no evidence of recurrence.  I have friends out where I live who are 10 and 20 and even one 30 year survivor.   Truly, with advancements that continue every day...we are living longer and better lives. 

Please reach out as the needs arises. We are here for you.  And think about joining our weekly live online chats if you are interested and able.  They are every Thursday at 1pm EST and you need only sign in to OVdialogue and click on the Discussion topic TEAL THURSDAYS.... to enter the conversation.  There we talk about everything, from our cancer to the weather to whatever comes to mind. 

I do wish you every success with your treatment.  Know we are here for you.  And know that you will find in time that you are far stronger and more resilient than you might realize.  
  

Strongwoman

Hello.  I had my followup visit from my surgery (fairly extensive and have an incision from pubic bone to xyphoid process) that was March 17th, this past Friday. I have Stage 3C Ovarian Cancer and will be receiving chemotherapy with Carboplatin and Paclitaxel for 6 rounds and 3 weeks apart.  I am aware that I will lose all my hair.  If anyone has any tips for receiving this type of chemo for the first time while still healing from surgery, I would appreciate it. Are there any tips for prolonging the process of losing one's hair?  Any products or tips for hair loss afterwards? Tips on the nausea one may feel afterward?  I am very much struggling with the hair loss.  I have had long hair for a very long time. For me, this is just another loss to overcome and is difficult to process.
My surgery consisted of a radical hysterectomy, bowel resection and debulking that included removal of nodules on my omentum, peritoneal cavity and spots located between my liver and diaphragm.  They feel they got it all on surgery. My recovery has been very rough and I took myself off of pain meds in hospital as they were making me sick in hospital. I also had extreme difficulty eating when I was both in hospital and when I initially came home.  I slowly have increased my eating and can eat much more now. I put myself back on pain meds a week out of hospital as I couldn't take the back pain that I was experiencing that brought me to tears and caused me to barely stand.  I was hospitalized a week ago due to some discharge and pain. They discovered a 7 cm pocket of fluid on my bladder.  They felt they could drain it but then discovered they can't.  The surgeon isn't worried about it and thinks it could be a dissolvable packing she put there.  She also wants me off my Daulid and only taking Tylenol for when it's time for chemo.
If anyone has any tips for me, I would greatly welcome them.

Strongwoman

I almost forgot. I have Low Grade Serous Carcinoma.

NovaScotiagirl

Strong women,  I  had nausea after chemo,  the breakthrough drugs did not control it, however peppermint tea, ginger gravel really helped me , the cancer clinic is really good at adapting the anti nausea meds given before chemo to help keep the nausea at bay.  

Fearless

Hi @Strongwoman I'm so sorry to hear your recovery from surgery has been so challenged, and now your anxiety over the prospect of chemo and what that might bring.  And I say "might" because all the literature you read about reactions and side effects is very generic. Each one of us responds differently, although yes, the hair loss from the Paclitaxel is always to be expected.

If you haven't already, I suggest you order the booklet from Ovarian Cancer Canada "By Your Side".  It's a very informative and helpful guide from initial diagnosis through first line treatment and will help with some of your questions about managing through chemo.  And the OCC site itself is full of information...videos, stories, etc. that you will find useful over time. https://ovariancanada.org.  You will find the booklet order form under Resources. 

I too was 3C although high grade serous.  Radical hysterectomy and then six rounds of chemo a little under 6 weeks of surgical recovery. I don't have a lot to share that you might find useful. My surgery went quite easily and so was recovery for me. The same scar but no pain and no complications.  But if you are concerned that you might not be up to beginning chemo as planned by your oncologist, do ask if there is any risk in deferring a few weeks until you're more up to it. Often treatments are scheduled based on standards of care but in fact timing can be adjusted where warranted and without risk.  I learned very quickly to always ask lots of questions about any recommendation.  Are there other options that were considered and if so why is this the best....what can I expect in terms of my quality of life during treatment/after and what support will be made available to me if I need help.....etc.  

As for the chemo, I too was to be on Carboplatin and Paclitaxel but had a reaction to the Paclitaxel that resulted in a switch to Gemcitabine.  Since it's the Paclitaxel that affects the hair follicles and Gem doesn't I didn't have that issue to contend with . But being unaware I'd end up switched I had "prepared" myself. I too have always had very long and luxurious hair so an impending loss wasn't exactly something I relished...until I started to really think about what that meant. I started chemo in June and my head always was very hot and sweaty in the summer. The thought of no hair suddenly became something I was looking forward to. But that's just me.  Hopefully some of our gals who've experienced hair loss will share their experience with you or those who might have been able to manage it somehow.  

Again, I had little nausea from the chemo.  Gem is very mild and I seem to tolerate Carboplatin very well. So again, I was prepared for the worst and delighted to find it wasn't as bad as I had envisioned.  For me, two things stand out though.  Chronic fatigue that was almost a constant but especially in the afternoons. I just learned to give into it and if my body said rest and sleep and i did just that.  I even arranged my schedule so that I was home in the afternoons to accommodate the need for sleep. The other was neuropathy in my feet and lower legs....numbness for me, others experience some level of pain.  I found that really impacted my mobility and still does five years later. I do wish I had addressed it better at the outset.  So I encourage you to read up on that.

If it's of any comfort to you, the staff in the in the Cancer Centre chemo rooms are amazing and enormously capable and helpful in managing your treatment with as much comfort as is possible.  The key is communication. Ensure they know how you're feeling so they can adjust and address changes to make you more comfortable. Over time it became so easy for me and many of my friends that we'd just sleep through it.  And finally, the diagnosis of OVC is scary.  Know that in the past few years there has been so much advancement in treatment and drugs that we are living longer and better lives. And more and more women never experience recurrence. In my circle here in Kingston ON, we have gals who are five, 10, and even 30 year survivors. 

Please continue to reach out to us here at OVd as you need support...questions, concerns, or just the opportunity to share your feelings with a group of women who "get it". We've all walked in your shoes at some point in our journeys.  And I invite you to join into our weekly live online chats anytime. We hold those on Thursdays at 1PM EST. and to enter the chat just sign in to OVd and click on the discussion topic: TEAL THURSDAYS. 

In the meantime, you are in my thoughts  and sending you enormous virtual hugs and best wishes....
  

msf72

@Strongwoman
Hello ladies, I just finished my 3 round of Chemo one week ago Paclitaxel and Carboplatin. Although, my case is a recurrence ( back in 2018 I had a huge surgery) was thought that the cancer was capsulated so I did not have chemo.
What I can say about my experience, I did not have any nausea or vomiting ( I took my anti nausea as prescribed ) my appetite has been as good as before chemo. I had a really bad muscle pain in my legs, knees and ankles ..I was told it felt like having arthritis that lasted up to 6 days painful to walk. Constipation was a big one for me every time so I would recommend you to have restolalax handy just in case. I felt tired specially after the second round ( the first chemo was not too bad) they accomulate. Also, I had very late allergy reaction, rash in my chest, breast and some in my belly on day 16 which is pretty latel, again every time. The other awful side effect is the itch/burning feeling in my hands and feet. I ending seeing the doctor before my last chemo and we decided to adjust the drug Paclitaxel that cause those side effects. I was giving a few advices here and one of them was to wear loose clothing ( I wore a short sleeve t-shirt every time) My first nurse was amazing (all of them) she talked to me about what to expect and she offered me ice to put on my hands and feet while getting the famous Paclitaxel ( they have plastic ziploc like bags) she said that other patients used them and it helped to control neuropathy symptoms so I did  ( I even brought my own ice just in case the cancer centre run out) I also chew ice during the first 3 hours of treatment.
Regarding loosing hair, as soon as I found out chemo was about to happened I went shopping for a wig knowing that is hard to find the right colour/style without breaking the bank with a real hair one so I got a short bob (had a haircut like it years ago) I starting to loose my hair on day 14 (first round) I read about other's experience and decided that I want to do it at my own pace. I did not care about cutting it short I didn't use heat the first week or so ( my hair has always been everything to me, my pride and joy) so when I was having a shower and noticed a big chunk coming down on my back I realized oh boy this is getting real, had a big cry it was hard. I got out the shower dry it, flat ironing and enjoyed the next 5 days knowing that "the day" to say good bye was coming up (I shed like my dogs haha those days) ending asking my husband to cut it super short and a few days later shaved it.  My eyebrows are still here, I starting loosing my eyelashes... that makes me feel weird, nose hair is gone too.
I don't think there is nothing to prolong loosing your hair I am not sure where in Canada you are but I think Toronto has a company that rent cold caps if you can have access to them.Hair will grow up eventually so it should be ok I kind I like my bald head. I have been using a non scent soap from Rocky Mountain soap company here in Calgary and aveeno moisturizing but I think I will have to do some research for something better when my hair will begin to grow.
Other thing that is very important, is to reach out to the nurse, pharmacist if you are experience bad side effects immediately they are there to help you always. I did ask for help from a psychologist and that has helped me through all this ordeal.
Make sure to have a journal it helps a lot comparing chemo to chemo ( brain fog is real) if I don't write things down I just don't remember. I wish you and all the other ladies here the best of luck, chemo is hard but we can do it! we are all strong women here ;o)  

Fearless

@msf72

Thank you for sharing such a comprehensive picture of your experience. I'm sure it will prove helpful to more than just Strongwoman.  In the meantime wishing you success with your treatments and for a return to good health.  

Fearless

msf72

@Fearless - Vol Mod
Thank you very much! It is just the beginning of this second journey. I am hoping for good news or as good  as I can get next week after having my PET/CT scan a few days ago. I am sure sharing my experience will help more than one person 🙏🏼I am glad I took the time to do so. 

Strongwoman

Thank you for sharing your experience.  I joined this forum just for the openness I thought it would provide for everyone going through similar situations.  I appreciate you taking the time to respond.  It has definitely helped me and I face my first chemo tomorrow.

Fearless

@Strongwoman

We'll all be rooting for you tomorrow.  May your chemo journey be smooth, effective, and comfortable.  As msf72 and the others in our forum say repeatedly, communication with the chemo staff is key to a successful and comfortable treatment.  


@msf72

Keeping my fingers crossed for a  favorable scan for you.  Full response is what we all hope for, and if there is another recurrence, the longer time before that occurs the better.  But a good partial response is also the opportunity to maintain for extended periods at a stable level. 
 I'm in the midst of my "sort of" second recurrence. My first was treated as a clinical trial for two years. It was never intended to be curative and only to see if the drug could stabilize the progressing cancer.  In fact It did end up a better response than expected by significantly shrinking my cancer before the drug went into stabilization mode until this past December when the cancer began to progress again.   So I'm now back in chemo, but only for the first time for recurrence and with a gap between chemo treatments of four years. So far so good, despite and recent rejection of Carboplatin as it built up toxicity in my system this time. But that's being effectively managed with a switch to Cisplatin and a desensitization protocol before treatment. I'm now heading into Day 1 of cycle 6 and with a scan scheduled for mid May. My CA has been back to normal range since the end of cycle 2 so hoping for a good scan result. That will determine if the end of cycle 6 is he end of this current treatment plan or another cycle or two might be beneficial.  Whatever the case, I continue to be so appreciative of the advances in treatment since I was diagnosed back in early 2017.  Now in my fifth year of survival, still feeling pretty good considering the cancer and this aging body (I'll turn the clock on 71 in December), and still optimistic for a much longer and productive and joyful life ahead.

msf72

@Fearless - Vol Mod
Thank you very much and wish you all the best. I want to thank you also for helping me and others with your knowledge and quick response to our questions. I feel very much like you positive and optimistic about treatments that will help us enjoy our lives as much as possible 😊for a long time ( in a couple of years I’ll be turning 50) and hopeful for a cure 🙏🏼 

@s@Strongwoman sending you hugs , you got this! 

kastoyles

@Strongwoman - reading the above posts is almost like reading my journal. I experienced the fatigue, nausea, constipation and leg pains. Advice?  Take the prescribed meds. This is no time to be a hero! Eat smaller meals so not to let your stomach get too empty - it worked for me. Be sure you are well-hydrated before your chemo treatment and for the following four days. It helps flush your system and keep the plumbing working. I took Sennokot for the constipation. I have issued with constipation at the best of times. So I started taking them the night of chemo treatment - two at night and two in the morning.  My chemo was on Thursday and the leg pains started on Sunday. After the first treatment, I started to take Tylenol Extra Strength on Saturday night. Heating pad helped. And...sleep, sleep, sleep! Give your body what it needs and it will need rest. I could have a nap in the morning right after breakfast. I was usually awake during the night for two or three hours - thank God for the games on the iPad. You'll find a rhythm that works for your body and be sure to listen to what it wants and needs. Even if you are feeling good during chemo, don't overdo it. I made that mistake and was in bed for three days afterward.  

Like Fearless, I was delighted that the infusion wasn't as bad as I thought it would be. The fear of the unknown and of course, our mind loves to play games with our emotions at this time.  You'll be fine - come back here for support and to let us know how you are doing.

LUCY_BC

Hi, my name is Lucy (from BC)...... I hope I’m posting this introduction in the right place? I started having symptoms in January 2021.  My Dr. thought maybe IBS. I returned to my doctors office the end of Feb., and a pelvic ultrasound was ordered for March 9 th.  Results were a possible complex cervical cyst OR loculated fluid, with a recommendation of seeing a gyno. So a Gyno referral was sent.  After 2 weeks of no appointment with a Gyno, I wanted to be more proactive.  Symptoms were progressing, so I booked a PAP test and exam with my GP.  My GP ordered blood tests, stool tests and a abdominal ultrasound for March 30th. On April 6th my results were; possible mass OR bowel loop and a CT SCAN was recommended.  On April 9th I had my CT and results were April 12th.  Results being metastasized masses, numerous nodules all thru peritoneal cavity. YES I WAS SHOCKED! Between 1996 - 2018 I’ve been very proactive in watching and getting tested for OVC, and yet it still seemed to find a way into my life. My Mom had it.  I’m a strong woman with a sense of humour BUT my anxiety level, along with anger & frustration are getting the best of me. BECAUSE I still haven’t had surgery!  My GP has sent me directly to the BC Cancer Agency.  I have an Oncologist appointment on May 6th and a core biopsy to be done on May 7th.  The reason for a biopsy is because the CT Scan couldn’t detect the primary cancer,  even though we all know it’s probably OVC.  THIS IS WHAT I DON’T UNDERSTAND......why not have surgery, to debulk the cancer and then send out specamins to be biopsied?  Then there would’nt be all this waiting, while the disease is spreading. Sorry.....I’m frustrated❤️

Strongwoman

Hi Lucy.  Welcome to the group.  I am new to it myself just this year.
You sound very frustrated with the system and process.  Sometimes, it does take the process to get to the end result. In saying that, this does not diminish your frustration in the waiting process. I too, had been watchful and proactive about getting tested regularly due to a family history.  I was informed in November 2020 that I was good and did not need to attend another gyno appt until 3 years from then.
My cancer was detected when I had a GI bleed, followed by a colonoscopy and a biopsy that was taken at the time.  My diagnosis since the beginning changed from colon cancer to ovarian cancer to the end result being peritoneal cancer (it mimics ovarian cancer in many ways and in treatment). 
The waiting is one of the hardest things to go through especially when you would like to have an end result.  I would advise that if you have not already, get prepared for what you will need post-surgery as that may keep yourself busy  until you have a more concrete answers and dates. 
When they do operate, they will take biopsies and send them off.  Once in there, they can better detect any other areas and remove them at the same time (if possible). Having just gone through the surgery myself and was opened up from pubic bone to xyphoid process (breast bone), it is a lot. The recovery is slow and I had my own hurdles to overcome from it.  
Some of the types of cancers are slower spreading than others as well which also will be detected upon having the biospy results.  
I will not tell you to be patient but encourage you to reach out when you are frustrated, etc. I have found the group very helpful and reassuring during my own process. 
Hang in there and know you are not alone.

Elsie13

@LUCY_BC, Sorry you have had this terrible shock, and now you have to wait for surgery. I wonder if it has to do with Covid-19 and booking an operating room?  The surgeon needs to know ahead of time what will be involved and how many hours it will take?  Well of course, maybe that's always the case. 

Also, could it be that by doing the biopsy, they will know if your cancer is the type that needs some chemo first, and then surgery?  In any case , if you are talking to your GP or oncologist, be sure to ask why they can't just book the surgery!

Hope you will get answers soon!

LUCY_BC

You may be right in COVID playing a role.....I certainly hope not because that would be maddening.  I have to dig deep for patience.  I have a bit of a comfort zone in regards to OVC, only because I documented my Mom’s 8 year stint with it.  I know there’s a lot of work to be done yet.  I just don’t want it to spread any further.  As you all know, the waiting game is hard on our health as well.  Thx to all of you for your response, I can see this site will be helpful👍

jnrichmond

Lucy_BC, I know it seems frustrating but they may be getting all their ducks in a row to prepare your treatment plan. Chemotherapy is often used to shrink the cancer prior to surgery in order to make surgery more successful or even doable. It is important to have the biopsy to know the type (even ovarian cancer has several types) and grade of cancer you have in order to know what treatments/drugs will work. I found once I had a treatment plan my anxiety did lessen. I hope you will get some answers from the oncologist when you see them. Hang in there. 

LUCY_BC

TY....I will keep positive til next Thursday.  If I may ask; what were everyone’s CA125 results prior to surgery & chemo?  Mine were so high, I thought for sure I’d be sent for surgery right away.

Fearless

Hello @LUCY_BC
So sorry a diagnosis brings you to us but very glad you decided to engage with the community. I do believe you will find being among those who "get it", who have or are "walking in your shoes" will be very helpful.  We are almost 800 strong these days, representing all types and stages of OVC and all provinces across the country.  Use us for education and information or just a sounding board as you feel the need to reach out with anxiety or sadness or anger, all emotions that are normal.  And do please share your successes, even the wee ones. We're here to celebrate with you too.

But first allow me to guide you to Ovarian Cancer Canada and it's website. https://ovariancanada.org.  It houses a wealth of information that might prove helpful in better understanding the disease and what you can expect; everything from stories to videos to updates on research progress.  And if you haven't already, order the booklet By Your Side.  It's a very valuable guide through first diagnosis and first line treatment.  You can order it soft or hard copy. I happen to have both, finding the hard copy always at my fingertips for reference.  https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources

You may already be aware but OCC has been running a speaker series on the Zoom platform this year.  Videos of the first ones are located on the website. The most recent was April 21 but there will be more upcoming.  On May 8 OCC will be holding a day long (11 am EST to 4pm EST) symposium.  Our last one was a 2.5 day virtual affair back in September and our members are still talking about how valuable it was to them.  The link to register and the agenda are posted on our Main Page under Discussion topics.  

I am sorry to hear of the challenges you're facing and understand your frustration.  But the timeline you've provided is not unusual. Getting through the varying levels of medical care can slow the process but you're where you do need to be now, with a gynecological oncologist.  As for the need to biopsy, OVC comes in many different forms and to inform a treatment plan your oncologist does need to have a pretty solid idea of the type and stage of your cancer.  That said, I can also tell you from my own experience that no matter what you've been told, it's your oncologist and team you need to defer to for accurate information. In my case I was told I was "riddled" with cancer yet it turned out to be only one large tumor, one tiny one and no other visible when they did my surgery.  So take it one step at a time I know that's hard to do when your head is saying....just get rid of it !!!!

You mention your mother having had OVC 8 years ago. I can tell you the advances in research and treatment for this disease in just the past 3 or 4 years are amazing and so very hopeful.  I was diagnosed in early 2017, stage 3C high grade serous.  Surgery and 6 cycles of chemo left me cancer free by that fall.  I did recur unfortunately in late 2018 but at the time of a new clinical trial of the drug Olaparib, a PARP inhibitor, and was offered the options of chemo again or the trial.  Since recurrence had been caught very early and I was at little risk, I opted to join the trial and luckily the drug worked for me for almost a full two years before my cancer began to progress again. This time I am almost finished my chemo, again with very successful results and happy to say I am in my fifth year of survival having beaten the odds I was given....and I'm still going strong.  For others, first line treatment does the trick.  I have friends, diagnosed with the same type and stage at the same time as me and they are still showing no evidence of recurrence.  I have friends out where I live who are 10 and 20 and even one 30 year survivor.   Truly, with advancements that continue every day...we are living longer and better lives.

I noticed your second question about CA125 levels at diagnosis.  The CA is a very unreliable marker.  It can provide false positives, false negatives, fluctuate for reasons other than any relation to cancer. And the score generally has no direct relationship to the amount of cancer or it's rate of progression. To date, we still don't have any reliable diagnostic tool to identify OVC in early stages.  Sad but a fact.  But as an example, when I was first diagnosed my CA125 was 900 yet my primary tumor was the size of a very large grapefruit.  When I recurred in December last year my CA125 was close to 3000 yet the two tumors that had progressed were both less than a centimetre.  The best we can use a CA125 for is to look at trending as an indicator if more intensive investigation is required.  So if you're CA is climbing over time and significantly ie. doubling that likely warrants a scan. I hope that helps.  

Please reach out as the needs arises. We are here for you.  And think about joining our weekly live online chats if you are interested and able.  They are every Thursday at 1pm EST and you need only sign in to OVdialogue and click on the Discussion topic TEAL THURSDAYS.... to enter the conversation.  There we talk about everything, from our cancer to the weather to whatever comes to mind. 

I do wish you every success with your treatment.  Know we are here for you.  And know that you will find in time that you are far stronger and more resilient than you might realize.  

  

HoldingOn

Hi Lucy, I so get your frustration about the endless wait for treatment. It was a long 3 months before surgery  after a tumour was found on my ovary via ultrasound. Could it be that they want to do a biopsy to find out if it’s ovarian or peritoneal or bowel cancer before a major surgery?  Before you meet with your gyne-oncologist make a list of questions and concerns to discuss. I found it helpful to take someone with me to that appointment to remember answers since my anxiety was over the top by then. I was told that waiting a few months wasn’t going impact the success of  treatment. If you’re going to the Cancer Agency in Vancouver, the surgery will be done at VGH and yes, I’m sure Covid-19 will affect the wait time because of the limited number of beds available. Meanwhile, take some time for yourself to relax and get strong and healthy for surgery. I too had tumours throughout my abdominal cavity, including on my intestines so it was an 8 hour operation and I woke up with an ileostomy, nerve damage to my leg and a definite diagnosis of Stage 3 High Serous OC. Recovery is different for everyone, so if you think you need more time to recuperate before any chemo is scheduled, let your doctor know. I regret that I didn’t know that at the time because after surgery I was down 40 pounds (no appetite), had problems with digestion and the ileostomy, and felt wretched and exhausted. Needless to say, chemo didn’t go well, so make sure that you’re up for it. You are your own best advocate: stay aware of how you’re feeling, ask questions and make your needs known. If you’re in pain now, make sure the oncologist is aware because lots of symptoms can be treated pre-surgery. While many have walked this path, we each have had a unique experience. Be open to that. And be open to how the world offers love along the way. 

I wish you all the best. ❤️ Pat 

gaylestorm

@Strongwoman.  After my surgery, debulking and omentectomy I needed to figure out a new way to deal with my "new bowels" as they reacted totally different than prior to surgery.  I was not eating and taking the right laxatives for my problems.  I consulted the oncologist surgery team.  They were great at setting me in the right direction. I now take daily laxative and adjust as needed.  The one thing I have used continually is a long bean bag.  Heat it up and it seems to relax my abdomen and  reduces pain.  I hope that helps.  
Between the teal sisters and the oncology team I can find support and answers.  

msf72

Hello Everyone,
I finished my 3 chemo treatments and after reviewing the CT/Pet scan the tumor did not shrink but kept things stable and because the bad location of my tumor surgery isn’t possible right now. My next step will be radiation (SBRT) so I was wondering if there is someone here that went through that or is going through and wanted to share their experience with me please. Today is my scan appointment before treatment begins in a few weeks. 

Thank you so much in advance 😊

Fearless

@msf72 I am sorry to hear how difficult your tumor is to treat using traditional therapy.  Hopefully the radiation will produce the desired result for you.  We've not had many of our gals mention radiation, at least not in recent months so not sure your interest will be noticed and responded to by anyone with this specific experience.  You might want to go to the Search bar at the top right of the screen and type in "radiation" as a key word That may pull up some discussions or comments on the subject that might be helpful.  

msf72

@Fearless - Vol Mod will do! Thank you very much 🙏🏼😊🌸

Annie1950

@msf72 I can't imagine how stressed and anxious you must feel waiting and wondering what the next step will be. My heart goes out to you and I'm hoping your radiation treatment will give you a path to the road ahead.  Once on that path you'll feel so much better and in control.  For me that was so important.  Best wishes.

ShanaL

  Hello! My name is Shana and I am 42 years old and I live in NS with my husband and my daughter. On April 13 I went to the ER with a sharp pain in my lower right stomach. The doctor preformed an ultrasound and then sent me for a CT scan where they discovered a large mass . I was taken into surgery that night and the mass, my right ovary and my appendix removed. It weighed 10kg! 

   Last week the pathology came back and I was diagnosed with mucinous OC stage 1C. I met with oncology on Monday and she scheduled a colonoscopy and a staging surgery. I am very nervous about the surgical menopause. I am wondering what to expect? I understand that mucinous oc is more rare and I was wondering if anybody has the same diagnosis as me and what I should expect? 

Fearless

@ShanaL
I'm so sorry for your diagnosis and at such a young age. It seems this once a disease for those like me...in their twightlight years, but the age seems to be dropping year by year and with it other considerations, like early menopause, coming out of treatment.
We do have one member who was recently trying to connect with other mucinous cancer members.  @glenda
hopefully will see this and reach out to you. But I also suggest you type the keyword mucinous into the search bar at the top right of your screen. It will pull up discussions related to the topic that you may want to engage in and others in those you may want to connect with.

You are fortunate to have had your cancer caught at an early stage. Most of us tend to be diagnosed far later and in advanced stages. So that will work in your favour for sure.  As for the size of your tumor, like many of us you were surprised and I'm sure to think it was there and that big and yet it was undetectable until it caused some pain.  Mine primary one was the size of a very very large grapefruit...yet for me undetectable until I started having breathing problems.  I went to my doctor worrying about lung cancer and came home with an ovarian cancer diagnosis.  This cancer of ours is sneaky for sure.

I will suggest a few things for you beyond connecting with like members here.  The Ovarian Cancer Canada website is a fountain of information, from videos on topics of interest, to announcements of new developments, to stories from our teal sisters. All information provided there is vetted for accuracy and reliability so use that as your 'go to" for information on the disease.  They also provide two booklets, By Your Side for one who is newly diagnosed and undergoing first line treatment and Still By Your Side for those undergoing recurrence.  These booklets are wonderful guides to inform and assist you through  most steps in your journey.  You an access the OCC website on https://ovariancanada.org and order the booklet at https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources  It comes hard and soft copy. I have both, the hard copy sitting on my desk as a reference I go to frequently.

We also have a number of young survivors like yourself who do connect from time to time on issues like early menopause that you might find helpful.  Again, you can key in "menopause" into the search box for some of those conversations. But I have flagged @jiselle16 one of our younger members and a volunteer Community Champion. She has been focused on support for our younger gals and may have some recommendations for you outside of what you might find in the discussion threads here.

Yes, you are correct your cancer is one of the more rare types. But I can tell you that we've made huge advances in treatment over the past few years and we are living longer and better lives than ever before.  You will find many of our members fully cured, or surviving with the disease very long term.  

Finally, this group is close to 1000 strong across the country all of whom come and go as their own needs arise; whether it be questions, or a safe place to talk about how they feel, or to reach out and support another teal sister. Use us for whatever you need. You are not alone in your journey. We are all here for you.  Every Thursday I host a live online chat at 1pm EST.  Love to have you join in. You need only sign in and click on Teal Thursday in the discussion thread. Or OCC is just launching a new Zoom platform discussion/connection group called Teal Teas.  The information on that is posted here on our site.  

Good luck from all of us. Keep us posted on your progress. Reach out for whatever we can do to support you. And always remember you are not alone.
  

ShanaL

Thank you so much ❤️