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Restaged to stage 4

caregiver3
Posts: 49
Joined: Oct 2017

I posted several days ago asking about when a PET scan could be wrong.  I guess I was hoping that it was and wasn't too excited about my husband having a liver biopsy.  Well, we did do the biopsy and it was cancer.  So the doctor restaged him to stage 4.  He had CT scan and MRI at the end of Septmember before his colon resection in October and the lesions that they saw they said were hemangiomas.  Well the lesions that showed up were new or wasn't seen on the original scans.  There was a total of 3 liver lesions that lit up on the PET scan and 2 lesions that lit up on the lungs on the PET, and also a aerotic lymph node.  The liver is the doctor's main concern.  He said that the lung lesions didn't have significant enough uptake and he will just watch these and isn't concerned with those right now and also the same thing with the lymph node.  So, he will now have 3 months of FOLFOX and Avastin and then a break, followed by a liver resection, and then heal from that, then 3 more months of chemo.  Of course, this is if no more lesions come up or grow, etc.  I am so scared now!  I thought we were dealing with stage 3b and now stage 4!!! From looking on this board,  I know many have managed to have many years without evidence of disease with stage 4, but I've also seen some that were not so fortunate.  I don't want to be negative at all because I want to believe that my husband will make it through this!  I could really use some encouragement right now.  I feel that nobody in my group of family or friends really understand what our family is going through.  I guess it's one of those things that you just can't understand unless you are faced with it.   

Woodytele
Posts: 163
Joined: Apr 2017

this is obviously tough news.  However, it seems he is able to get a liver resection which is not always the case, so that is actually positive news.  The liver is always the main concern to the doctor for the obvious reasons.  it won’t be an easy road, but since the doctors determined he is eligible for a liver resection, it will give him the best opportunity for fighting the cancer.  Stay positive. 

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

Its serious but right now you have a plan. My husband went to stage 4 and had a resection. he did not do any chemo though. Now it has returned in his liver he is doing chemo, then another resection, then more chemo. His doctor is sure she can cure him this time, I am hopeful she is right. As far as I know there is nothing anyplace but his liver, not sure if that will change. Hearing it the first time is scary but once you get through and start to attack it things relax a bit. Thinking of you I know how you feel. 

abita's picture
abita
Posts: 814
Joined: Dec 2017

Why no chemo the first time? My doctor said important since it had spread to my liver to make sure any cancer cells were killed. Asking because I have seen that people here do less infusions than my doctor said I need. Maybe because mine was found in 4 of the 20 lymph nodes, so that is an added risk. 

caregiver3
Posts: 49
Joined: Oct 2017

When we still thought he was stage 3, he had his LAR surgery and was supposed to do 12 rounds of FOLFOX.  Then he had the PET scan, and was stage 4.  So then his whole treatment plan changed.  They started with surgery first because his tumor was almost completely blocking and had went through his colon.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

Its a gut punch, and you have to reel for a while. Nothing wrong with that at all, just make sure you bounce back twice as strong. 

I remember too clearly the day my Oncologist told me of my Cancer spreading. I was totally unprepared, even though I had played the senario in my head many times. 

There are many here, who are living with Stage IV. There are many who have passed. The thing is, we don't know which end of the stick we have drawn, so run with the view that you guys have drawn the good end. 

I was driving up to my special place today, to read my latest CEA result. They could be good. They could be bad. Being sad, depressed, mad, unhappy would not change the result one bit, so I went up singing and waving at people and being happy. If you get to chose, choose happy. 

I was able to have my liver met ablated. That is a less invasive option than a resection. Something you might want to ask your husband's surgeon about. If he is a candidate. 

Good luck with the chemo cocktail. I hope he has a port. 

Keep us posted. 

Tru

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

with liver mets. Diagnosed in May 2015. My surgeon also thought  originally that the liver lesion on  the CT scan was a  hemangioma, but the oncologist wanted to make sure and ordered a PET scan, which  confirmed  that it was cancer. I began FOLFOX plus Avastin (8 rounds) followed by  28 radiaation treatments concurrent with a 24/5   5FU pump. The liver lesion shrank enough to be  ablated  in August 2016 and I  had surgery to remove the rectal tumor last month.  I  was fortunate in coming through both chemo and radiation with minimal side effects.  I'm currently still recovering from the surgery, but overall I've enjoyed a pretty good quality of life for the last 2.5 years since diagnosis. I don't know what the next scans will show, we're hoping they come back clear, but if they don't,  my oncologist says she has a whole arsenal of weapons against cancer and if we have to  we'll treat is as a manageable chronic condition.

It is scary, but as others have said, a positive attitude helps.  Don't let cancer define  who your husband is or who you are and don't let it take over your head. I know it's hard, but  I found it helps to  keep up with normal activities as much as possible and to spend as much time as you can actually living instead of worrying. Good luck to your husband with his treatments. Keep us posted.

Grace/lizard44

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

Being positive is tough especially when it's just the two of you.  But, at least he has you and you him.  There is strength in numbers, even two and of course you guys have all of us here rooting for you.

zx10guy
Posts: 266
Joined: Dec 2013

I'm not sure where you live.  But I would try to get a consult with Dr. Nancy Kemeny at MSKCC in NYC.  She invented the FOLFOX protocol and the HAI pump.  The HAI pump is a device implanted in the liver to deliver chemo directly.  She has been able to get those with liver mets who were told they were inoperable to be operable.

caregiver3
Posts: 49
Joined: Oct 2017

Is New York the only place that offers an HAI pump?  As of right now they think he can have surgery after 3 months of chemo, so will it still help?

caregiver3
Posts: 49
Joined: Oct 2017

Thanks so much for the support!  It means a lot!  Nice to have people that understand.  Chemo starts next week for my dh and I'm also concerned about cold and flu season now. Our youngest child just came down with a cold and it's hard due to her age and her being a daddy's girl to keep her distance.  Praying that we all stay well because of chemo next week.  What do you do though?  Now I'm starting to panic a little over this. What do they do if you happen to catch a cold and are fixing to have chemo?  And if I get sick, I'm the only one that can take care of him.  I can't make my dh understand either that he is going to have to be more careful about sickness.  He thinks it's no big deal. 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

Chemo may be cancelled if hubby is too sick. Chemo is cancelled when red or white counts go down. Chemo is cancelled when platlettes are low. When chemo is cancelled, your end date is pushed out, and that can be terribly disheartening.  When you're looking forward to the end of chemo, say in March, and it gets pushed out and pushed out to May, June, July it is hard. 

I suggest purchesing those anti-bacterial face masks. I wore one for a while. They are not fun, but watching the dates change was way worse.  And at the end of the day, when your immune system is shot because chemo kills everything, then something simple like a cold can be devestating. 

I think if you were to get sick, he would still be able to care for himself and you. Try not to take on too much, because you need to make sure you are well, mind and body, for your own sake, for the children and for hubby - probably in that order -

Tru

 

caregiver3
Posts: 49
Joined: Oct 2017

I have some masks.  I am wearing one, but my dh refuses to.  He thinks that he's already been exposed to the germs anyways and if he gets it he gets it.  She got sick really fast with no warning so no way to prepare.  He never gets a cold or flu even when everyone else does.  I can't make him understand things are different now.  I hope his stubbornness helps him through the chemo!

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

At Dana Farber Cancer Institutes, there are stations in the lobbies and around elevators with face masks - if you have something contagious, you take one and wear it to protect the cancer patients in the building.

haett5
Posts: 3
Joined: Nov 2017

you are not alone - almost same situation ..My husband was told rectal colon cancer- radiation/chemo/ all done- PETCT was read incorrectly- cancer spread to liver and celiac lymph nodes- month filled with ups and downs doctor appointment after doctor appointment 2 biopsies -just told stage 4 -- currently on aggressive chemo for 3 months- tumors must shrink/ remission in order for any surgeries etc.. oncologist in now referring my husband to Roswell we are heartbroken, scared, confused my husband 50 and we have 3 kids- still in disbelief.. 3 months of aggressive treatment then petct again -
positive thinking a plus- we remain positive through this journey - I will pray for you and your husband -

caregiver3
Posts: 49
Joined: Oct 2017

I still don't know if they missed something originally with my dh on his scans or not.  All I know is the liver lesions that lit up and showed on the PET we were told were not on the other previous scans.  He had CT and MRI before his colon resection and the PET after.  

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

It's hard for anyone to understand this disease unless they have gone through it.  If you can trust your husband's doctors than you should be following what he wants although a second opinion is always an option and your doctor should allow that.  It's devestating news to hear of the staging and treatment, but to be able to cut the disease portion out is a good thing.  Wishing him well and come on this board for any questions. 

Kim

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