Posted by XYZ123 on Sep 30, 2020 3:03 pm
We are waiting on the biopsy results and for MRI and CAT scans to be scheduled and analyzed. So we have no idea what we are dealing with or how to react. That day was surreal and I cried in the car driving home but had to pull myself together both for my husband and before seeing the kids as I didn't want them to get worried. They are older teens and we did mention the tumour and pending results and both have decided to stay optimistic and that's best given the lack of information. But I am finding myself oscillating between optimism and pessimism and feeling very emotionally unstable. Trying not to dwell and stay positive/hold it together but in the meantime the waiting is so hard and this is only after two days. When I think about the symptoms he's had for the past 9 months or so it seems so obvious in hindsight but there are other conditions in the family (Crohns) and I thought it was related to that. How long does it take to get the scans booked typically? We don't even have a date yet. Would we get called in after the biopsy or would we have to wait for everything? Wondering what the experience of others has been.
Posted by Essjay on Sep 30, 2020 5:41 pm
Your fears are understandable, and of course you want the scans and tests to happen quickly. Your husband is on the cancer diagnosis train now to as quickly as possible identify what the tumour is and what treatment is best. However, I warn you that this cancer game has a lot of 'hurry up and wait' about it. We spend a lot of time waiting for appointments and waiting for the results. The waiting is outside of our control. My response to it is distraction - anything that keeps my mind off things.
I am going to tag some other colorectal patients who can likely give you more insight on the tests and timelines. For example Whitelilies has been through treatment and recovered and regularly shares wisdom from her experience. But also some new members to the forum who are various ages, and in various stages of diagnoses and treatment and with difference stages diagnosed - moplanb goldcat86 Pinto alexisrj. I hope they will chime in.
In the meantime, I encourage you to get some rest and look after yourself. Your husband is going to need you - I will ask Brighty to chime in with her advice for carers.
Let us know when you get appointments scheduled - we will be following along.
Best wishes Essjay
Posted by Whitelilies on Sep 30, 2020 6:20 pm
Welcome to our CARING site.....we get it! we understand! we are on this journey together!
THERE IS LOTS OF HOPE !!!
First, I will answer your questions....timelines for CT scans, MRIs, Biopsy, etc. Well, with covid here and now, things just may take a bit longer than "usual".
Your husband is IN the system now.....you will get a call for date of CT scan. DO not be alarmed IF he is told of 2 MRIs. (I was not pre-told, and wanted to faint !)
MRI 1 is for colon area. Perhaps MRI 2 is for Liver. I was later told, this is common (to check liver). Biopsy, again, may take a bit of time.....this usually occurs "during the colonoscopy". I will assume, they already did this. So, soon, biopsy results will be ready. Soon, you will have an appointment, with medical staff.
Waiting SUCKS ! No other way to say it! It sure does. I also have 2 young adult sons. Tell your "kids" what works best for you and your husband....less is more? basics is fine? All personal choices.
Perhaps now is a good time, to help him by making smaller meals, and eating them more often....ie breakfast is cereal at 9am, but the toast is at 11am. Spread it out.
Things will soon be in to place.
I too was in shock, at age 56, on my FIRST ever colonscopy, GI Dr found "clearly" a 3 cm tumour. Really "downtown"....yucky zone! I actually never was told the word biopsy (or dont recall "hearing a darn word after cancer ?)...I was given radiation...then 2 surgeries. I too had "signs" for months....mostly rectal bleeding...I was mortified, and simply thought it would go away; NOT ! I was told stage 2, early 3. AND HERE I AM !!! Dancing like no one is watching ! And if you are watching, join on in !! Salsa? Cha Cha? Zumba too !!
Look after yourself as well.....this is vital. Your husband will need your support. Together, double the strength!
We are all here.....please post when you can, let us know what your next steps are, and we can offer ideas, support as well.
A wise lady taught me......Immerse Yourself In Nature !!.......so GO NOW, and crunch the leaves under your feet.....look at the blue sky.....see the Fall foliage.
Sending Virtual Hugs
Posted by Pinto on Sep 30, 2020 7:04 pm
I’m sorry you and your family are having to deal with this. Hearing the word cancer is always traumatic no matter your age or previous experience. I was diagnosed this time last year also at the age of 42. In fact, today I’m doing bowel prep for my 1-year colonoscopy tomorrow!
As far as wait times, I think this will differ greatly from province to province and even city to city. For example, I had to wait 6 months to see the GI doc and 3 more months to be triaged for a colonoscopy, but then I was told on the spot that I had cancer so I didn’t have to wait at all for pathology. The mass they encountered in my sigmoid colon was 14cm long and they said they could tell by looking at it that it was cancer. (I actually heard them discussing it during the procedure and I still had the wherewithal to look up at the monitor!) After that, the GI booked me for an urgent CT scan which happened 10 days later (that scan only showed the colonic mass) and then a meeting with the surgeon at about 2 weeks and in for surgery at 1 month. Pathology took about two weeks to analyze the mass, lymph nodes (58 removed) and a liver nodule that the general surgeon discovered during the colon resection. All of the lymph nodes were clear but the liver nodule was a metastasis from the colon so I was diagnosed with stage 4a (T3N0M1a) invasive, moderately differentiated, colonic adenocarcinoma. Anything in the “M” column will be a stage 4 diagnosis even if your lymph nodes are clear, however, there are a WIDE variety of stages in stage 4 so it’s really important not to get hung up on stages or stats. They also tested for Lynch Syndrome (negative) and tumour mutations (none). I then spent 3 months recovering from surgery before meeting with an oncologist at the BC Cancer Agency. Chemo started on February 5 and lasted 6 months. The good news is, my last scan earlier this month showed NED (no evidence of disease)!
I have to say, being “so young” and having to face this comes with its own set of challenges. I was on my second round of chemo when COVID19 first became an issue in Canada. When I went to the cancer care unit in my hospital, there was so much security, they asked me at every turn why I was there. When I told them I was there for chemo, the look of pity was soooo difficult to stomach, by the time I got to the unit I would be in tears from having to face it so many times. This is not an easy road but you and your hubs will get through it one day, sometimes one hour, at a time.
For now, try to focus on the outcome you want, not what you don’t want! Spend some time visualizing healthy organs and lymph nodes. That way you will be putting your energy to good work rather than having the fear just steal it from you. I used to tell myself, “whatever it is, I can handle it” and that mantra really helped me come back to my rational self.
Posted by Brighty on Sep 30, 2020 8:31 pm
My fiance was 41 at the time of his having symptoms of something. Like you, we didn't give it much thought because he was so young. The word cancer did not even cross my mind. And months and months went by before he would go to a doctor and proceed to have some tests done to find out what those symptoms were. In the meantime, it was scary, very scary and there is no right or wrong way to feel right now. Your mind will fluctuate between positive, negative, positive negative.........until you know what you are dealing with. Once we did learn what the diagnoses was, it was almost a relief in a way, because then we could begin to fight it. I'm praying for you that your husband's diagnoses turns out not to be cancer and is benign. But if it does turn out to be cancer, just know that we are here to support you every step of the way.
Because my fiance was so young, things moved along at a reasonable speed because the doctors were advocating hard for him because of his age. Tests, biopsies and results can vary from province to province but once the diagnoses was found, treatment started shortly after, and things got moving along. We were much more relieved once things got moving because we were no longer in limbo and something was being done. The lack of information was probably the worst part of it. Surround yourself with those you love, and be open about your fears. I was terrified, absolutely terrified as the caregiver. I had to talk to myself a lot in my head to calm myself down while waiting and waiting. I would say in my head "everything is ok until I hear otherwise.......... we can deal with whatever comes.....day by day, step by step...................we can do this..........we WILL do this................and you will be surprised at how much inner strength you will find you have. How is your husband coping?
Once you do find out some more information, make sure you are comfortable with your health care team. Find out everything you can about what is going on, and bring a notepad and pen and jot down some questions and notes to take. I found that while we waited for answers, we had to resume our normal lives and keep busy with normal mundane things, and find distractions to keep us busy. Any type of routine or normalcy helped keep the sanity. Do what you would normally do, but also have a talk with your husband about how you are both feeling. Start off with open communication. My fiance and I didn't have that. He would never tell me how he felt, what his fears were or how he was coping, but if you can do this together as a 'team' all the better. Because this will affect your entire family and you all need to support each other.
I truly hope this turns out not to be the worst case scenario, but if it does, please don't hesitate to private message me for coping strategies. I don't want to overwhelm you with too much of that now, since you still don't have all the facts. Just know there are many others who have been there and can help you through this. You are not alone, we are by your side every step. Please be in touch when you learn more.
Posted by moplanb on Sep 30, 2020 11:17 pm
Waiting for tests and the uncertainty that accompanies this is difficult.
A brief timeline of my experience:
July 12 - first signs of something amiss
July 13 - called GP, virtual appointment - referral made to gastroenterologist for consult/colonoscopy
August 10 - virtual consult with gastroenterologist - sent for bloodwork
August 19 - colonoscopy preformed (8cm tumor found, Dr, performing procedure suggests that "emergency surgery" will be necessary and am referred to surgeon)
September 3 - CT scan - requisitioned by surgeon
September 7 - ultrasound (liver) - requisitioned by gastroenterologist
Sept 8 - appointment with surgeon
I went to this appointment thinking that we would be discussing/booking surgery, but was told that I have stage IV colon cancer, it had spread to my lymph nodes and liver
Four tumors were found on my liver, with the largest being 9 cm.
Referral to oncologist
September 21 - first appointment with oncologist
Within a couple of days I was booked for a virtual appointment with oncology surgeon (liver) - tomorrow, Oct 1
MRI - October 6
echo - Oct 7
follow-up with oncologist - October8
PICC line insertion scheduled - October 9
I am relieved that my treatment will begin shortly. I found that, for myself, maintaining a positive outlook and carrying on as usual (with the exception of frequent naps, as I am feeling fatigued) have helped me cope with the waiting/uncertainty. Almost every doctor /nurse that I have spoken with have indicated that COVID -19 has had a profound effect on the timeliness of tests/procedures and surgeries.
XYZ123, you are in a good place to ask questions, research or just vent.
I wish you all the best.
Posted by XYZ123 on Oct 1, 2020 6:07 am
Posted by Lacey_Moderator on Oct 1, 2020 3:05 pm
We are here to walk beside you through this.
Posted by XYZ123 on Oct 14, 2020 8:13 am
It's weird, but because we had two weeks of thinking about it and going down some very dark paths as well as trying to be optimistic, it was almost a relief to hear that it wasn't Stage 4. But obviously the news could have been better. Now we have a plan of action though, and things are moving, we feel like he just has to be a really good patient, and show up, and that I just have to take good care of him and the kids (and me) and that everything else is being taken care of by experts. Having the COVID situation sucks of course, as family on both sides is far away and we don't have much local support, but my work is understanding and flexible and I know we will make it work. I'm going to try to get him on this site, if he wants to share. And I will officially introduce myself on the newbie page now that we have an actual diagnosis. Thanks everyone for listening, and talk soon.
Posted by Essjay on Oct 14, 2020 12:11 pm
I encourage you to take a look through the posts in the Colorectal Cancer forum, where you will find folks dealing with similar issues your husband faces, such as dealing with a stoma, managing eating through treatment. I’m going to tag a couple of colorectal patients who are at different stages in their treatment who may have some advice for you both Haemish Whitelilies moplanb
And the caregivers forum may also be a useful resource for you. Some awesome contributors who write on caring for those with cancer and who I would like you to meet are Kuching Trillium CentralAB Brighty Cynthia Mac and there are many others who will likely respond if you post in that forum.
I hope you are taking some time for you. Looking after yourself is going to be so important as your husband goes through surgery and starts his treatments. Do you have things you do to help you relax or release stress? My go to is getting outside - although I confess I’m not relishing my run in the rain today!
Wishing you both well, Essjay
Posted by Whitelilies on Oct 14, 2020 1:15 pm
OK....you are filled with more knowledge now about Stage, etc.....now time for boxing gloves!!
I hope that if I share "my journey", it may be helpful.
Lynch: I too was tested.....they chose to test 16 genes (they usually test 14 I was told). This takes approx 90 days to get results. (mine came back negative).
Ostomy: This is needed, as you shared, due to locations, of tumours. (My dad also has 2 tumours in similar areas.....one low, one in the "curl" of his lower colon). There is an Ostomy Nurse, specializing in JUST this...after surgery, your husband will get "lessons" on this, how to change it, care for stoma, etc.....accept ALL samples the nurse gives you, as these products are costly. In Ontario, we have the A.D.P. (Assisstive Devices Program)....they WILL pay approx $1000 for supplies for Ostomy. Dr/Nurse can help with paperwork, as Dr must sign off on this. Later, down the road, I can share products/brands I found as best of the best! (not to overwhelm now).
Obstruction: yes, I understand.....in a way, there will be "relief" once the tumours are out.
Radiation: yes, same here.....had it....to shrink the tumour.....I think you mentioned surgery is Friday, and then radiation/chemo, if needed.
(Sharing.....for my "location/size/aggressiveness", I was told Radiation FIRST......then surgery, and ostomy put in place).
Everyone is different.
You are facing the Whirlwind Times, now......but moving fast is GOOD! (Especially during covid.....this is good news....)
Ask anything.....nothing makes me blush. Keep sharing....Keep posting.....Keep strong.....for yourself AND your husband.
Go get a HOT CUPPA !!
Posted by Whitelilies on Oct 14, 2020 1:26 pm
Sharing.....to offer support.....
I had a surgery called L.A.R. (Lower Anterior ReSection), done via laporoscopy.
I had the Ileostomy, lower right side of my belly area. 5 days (and nights) in hospital.
When you know "what" surgery your husband will have, please post (if you wish).....so I/we/someone can help with ideas, for healing, etc.
Many larger hospitals, will have a "Patient Navigator".....this is a Nurse, who ONLY answers questions from patients, and their families, on the area that was affected by cancer....ie there can be a Breast Nurse Navigator, and there should be a Colo-Rectal Nurse Navigator.....she was on my Speed-Dial.....she can help and guide you, etc. Terrific Resource.
Time to LAUGH: Not only did I get 7 x 1 inch incisions from the Laporoscopy....I GOT A BONUS !!!
YUP.......a 3 inch lovely vertical "line", to match and meet my Caesarian line!!
Posted by Boby1511 on Oct 14, 2020 1:37 pm
Sorry bout the diagnoses. Stoma... I too have one.
My suggestion... tell your hubby to rub his tummy before it happens! I so miss my tummy.
Ontario has great help on ostomy care, home care to teach and see you thru until your comfortable.
I extended my 6 week home nurse care a little as I was weak and the ostomy posed a great challenge for me.
But the nurses were great and I have overcome (sorta... I have other home help).
Maybe they will reverse for you later on. Sending you positive energy.
Posted by XYZ123 on Oct 14, 2020 2:07 pm
Posted by Whitelilies on Oct 14, 2020 2:33 pm
Trust me....we ALL understand.....
I did have Loop-Iliostomy......When he comes home today from his Pre-Op Appt.....I hope he is "calm" in case the nurse did mark 2 "Xs".....I got one on Right side, and another on left.
Reason?? Nurse said that during "height" of surgery....Surgeon may need another "correct" spot.
All on right side....lower down.
Best Brand for Product = ColoPlast (sturdy/gives confidence).
We are all here for support.
Posted by XYZ123 on Oct 14, 2020 3:04 pm
Also just found out that I could have gone with him for this consult today, but too late now. And I had a great chat with my supervisor and director today and they were so incredibly nice and understanding so I think I'll be ok in terms of leave for appointments in future, which is a huge relief. But I have asked them to keep this to themselves as I don't want to be in a work environment where everyone is on eggshells either. Even if it is all virtual work for me these days...another blessing in disguise, which means I'll be able to provide more support and care at home.
Posted by moplanb on Oct 14, 2020 3:05 pm
Thanks for the tag Essjay
Thanks for the update. Yes, waiting is definitely anxiety producing. Despite my Stage IV diagnosis, and the fact that my tumors have grown significantly in in the time span between September 3rd and October 6th, I decided to approach my daily life in as normal a fashion as possible and not try to "overthink" my situation.
Your husband's treatment seems to be progressing well, despite the inevitable delays posed by COVID-19. I know that the waiting for tests and treatment to begin felt like an eternity to me! I had my first chemo treatment today (I just got home) and am immensely relieved and excited that my treatment is finally underway!
The plan is for another MRI and CT scan of my liver in 3 months time to check progress and determine if surgeries might be/become an option for me . I am hoping. According to my oncologist my chemo is going to be happening for quite some time, though...
I wish you both all the best. Stay strong for your husband and look after yourself (as a caregiver). I say this, having been the sole caregiver for my Dad for the last six years, and self-care has been important for my own physical/mental well-being through this time.
Posted by XYZ123 on Oct 14, 2020 3:12 pm
Posted by Boby1511 on Oct 14, 2020 3:53 pm
My coverage is 80% with work as well, but I have found that I have yet to pay as they are providing more than enough supplies. The insurance companies force you to sign up for the Gov't grant, which to me is stupid but what can you do. I have yet to be processed (since May)(covid they weren't even taking applications!). So insurance accommodates for the Gov't grant by covering less.. stupid... (Ontario the ostomy supplies is covered while in home care - 6 weeks).
The online ostomy supplies are a lot cheaper than local, but I've yet to have to do this. They also offer lots of aids (like an ostomy belt, I have had to use one with my constipation).
Did they tell you about GUM? To help get the pooper going after surgery.... gum is on the list... I did find it did/does help me.
There should be a pamphlet at the hospital... plus they will likely provide you with a ostomy care book...
I found I had to continue on with the restrolax (and other stuff) to keep my pooper going.
This can be prescribed by a nurse practitioner. I take this stuff everyday, so it can get costly. Why not let insurance pay?
Oh and I have found white grape juice helps me get going again (chemo constipates me).(not covered by insurance).
Not that you have the issues... a just in case you didn't know.
Posted by Boby1511 on Oct 14, 2020 3:58 pm
Chemo day! Progress great! Hope you are having an easy time adjusting.
Sending you positive energy. Hugs.
Posted by XYZ123 on Oct 15, 2020 2:29 pm
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