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Mother newly diagnosed. Don't know stage..yet...

cv5001
Posts: 4
Joined: Apr 2019

My mother has been going through her bit of health issues, which we thought were just hemorrhoids. This all started last summer. She had a colonoscopy done in August 2018 and it just noted she had hemorrhoids and nothing else. Well, mid-February 2019 she gets her annual physical done. Bloodwork notes she's anemic and she is referred to a gastro and colon and rectal surgeon given her issues with the hemorrhoids. She couldn't get in to see the Gastro for a while and was able to get in to see the surgeon fairly quickly. At the appointment the surgeon saw what she thought was a protruding hemorrhoid and recommended a hemorrhoidectomy, which she thankfully could do the same day. After the procedure she lets us know that she suspected the mass she removed was cancer and sent to pathology for confirmation. We couldn't believe it. How is it cancer?! Other than the hemorrhoids she had no other symptoms at all! Not only that... what about the colonoscopy she just had done!? We received confirmation about a week later that it is indeed cancer and she was ordered to do a CT and MRI.

Here we are now... she has an appointment tomorrow with the surgeon to go over the results. The only thing is, I was able to see the results of the CT and MRI online through her patient portal. My heart sank! The cancer has spread (from what I've been reading and researching, considered stage lV at this point), at least 5 lesions on her liver and 20+ nodules on her lungs. Also a few nodules on the surrounding Lymph nodes. She was over my shoulder and asked what it says... I did not have the heart to tell her the full story but told her that they found some spots on her liver and lungs.

My mom has suffered a lot in life and has been battling with anxiety and depression as it is. When we received confirmation that it was cancer she was already going on about how she will not do chemo because" that's what actually kills you" and that she does not want to go through all of that if she's just going to die anyway. Deep down I know she's scared though. I know this news may send her over the edge (I mean that's A LOT to take and I completely understand).

I have been going through reading your posts and stories and it is encouraging and gives me hope that she CAN fight this. But I already know that half the battle is going to be giving HER hope and convincing HER that she can do this. She works but get's paid very little and I know she will likely have to stop working to do treatments. She has insurance which she pays for but it isn't the best and she will likely lose it when she stops working. She lives with us so thankfully I can help care for her. All of these things that we need to start thinking about! Any advice? Or just encouragement that I can share with her when the time is right.

 

Thank you!

Claudia

Twinzma
Posts: 210
Joined: Jan 2018

I am so sorry that you are here. With the spread to distant organs she is most likely considered stage 4. Now know that several here have been at stage 4 and have faught this demon successfully! Don't look at survival statistics, they are old and completely unreliable. They include death from other causes SHOULD NOT even be up on the web. 

My husband is stage 4, has 30 liver mets possible lymph involvement (we are in the wait and see mode on that). Diagnosed on Thanksgiving day 2017 he started systematic chemo the second week of Dec. Since his chemo breaks haven't been much to speak of a week here and there only. He was on Folfox with Avastian then Folfri with Erbitux. They stopped the Florfir infusion a couple of months back and put him on the chemo pill while they were treating his liver mets with Y-90. Throughout all his chemo he did very well. He was fatigued, but never EVER sick! His hair thinned a little, but nothing that really was that obvious unless you knew him. He had not lost a single ounce until the Y-90 (that was rough on him). Chemo is different for everyone, some are lucky like my husband, others do get sick. The only true way to know is to try it. 

I empathize with her and her fear of treatment. We all have this vision in our head of cancer patients wasting away becoming shells of their former self's. I just wanted you to know, it isn't always like that. My husband had such an appitite sitting in the infusion chair. This man ate stinky hoggies, sausages, all the things that even a healthy person would cringe at! 

Be sure that whatever she decides to do that she puts in a lot of research. So many patients turn to these unscientifically proven "treatments" only to suffer horrible consequnces. A lot of clinics in Mexico for example have a "cure", well no they don't! They take advantage of the most desperate patients, drain them financially, give false hope and they are no longer with us sadly. Right now I have someone pushing Alkaline water on us. Cancer can't survive in a alkaline body they say. I am sorry but unless there is a controlled study, by an accredited medical facility we can not entrust it to be safe or beneficial. Anyone can say they had "independent studies" information is easily manipulated after all. Just use your due diligence and whatever you do, never approach her in a manner that can be construed as confrontational with it because she will shut down. 

Again honey, I am so sorry that you are here. It sucks! But know this group is amazing, I would have long lost my mind if it were not for the people here! 

cv5001
Posts: 4
Joined: Apr 2019

Thank you for your words! That is amazing that your husband did well during chemo. I am wishing him all the best and a speedy recovery!

We found out today that it is an aggressive form of neuroendocrine carcinoma (apparently it is rare) and is spreading quickly. She has an appointment with the oncologist on Thursday to figure out treatment. So we will see what happens. Time is of the essence as it has already grown a bit since her last follow-up roughly 2 weeks ago. I'm really hoping there is a good, effective treatment out there. Thanks again!

abita's picture
abita
Posts: 605
Joined: Dec 2017

My chemo made me starving, and I gained 50 pounds.

 

Did he get a rash from the Erubitex? I am wondering if I will get that drug, and if the rash will be placed so that I don't want to go outside my apt.

Twinzma
Posts: 210
Joined: Jan 2018

The rash is something! Luckily it is not on his face, but it is really bad on his chest and back. It's a good rash though! The oncologist says when you get the rash, it means it's working. Long sleeves and pants honey and advoid the sun!

 

abita's picture
abita
Posts: 605
Joined: Dec 2017

thanks, I can deal with wearing long sleeves! But on the face, I would be self conscious

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

These things hit you like a freight train.  The best advice I can offer is to take one day at a time and to face each issue as it arises.  There will likely be lots of doctor visits coming up and lots of information to process.  Take some time to breathe, to enjoy the sunrise and the Spring weather, and try not to pre-guess everything.  Sorry, that is all I can offer.

cv5001
Posts: 4
Joined: Apr 2019

A freight train is right! Nothing can prepare you for this for sure. I appreciate your advice. It is easy to overlook the simple things in life when we are all caught up in the medical frenzie. Thank you... you have offered me a lot :)

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

you have to come to this board. I will tell you that when I found that my cancer came back in my lungs, I was ready to give up. However, I was lucky to have a team of great doctors who insisted that they would work for nothing less than a cure. 

Its certainly not easy, but all you can do is one thing at a time. Hopefully her team will not let her give up.

sending love and strength your way.

k

cv5001
Posts: 4
Joined: Apr 2019

Thank you so much! I agree, having a good medical team as support I'm sure helps. 

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