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Husbands recent scans not good

Pamcakes
Posts: 100
Joined: Jan 2018

Last week we had DH's PET/CT scan at MD Anderson. Two places are of concern. Liver and lungs were said to be clear, so that was a blessing. After we met with the dr, they had us meet with the surgeon to discuss what may need to happen if the places come back positive. They said one place was in the wall of the colon and maybe the reason nothing was detected during the recent colonoscopY. we are scheduled to go back the last week of May for 2 biopsies, pelvic MRI, and another PET/CT. They also have us scheduled to meet with radiation. CEA was up a little from the week before, but the CEA is always a little lower at home. Still within normal range, but CEA has never been over 5, so not a great marker for DH. The MDA doctor was very upset the local oncologist had pushed for more chemo, was not addressing the HTN. Of course I've been on google looking for anything I can find on a false positive and praying the chemo from the week before caused the places to light up or the major back issues DH is having, but until the biopsies are completed we will not know. We were told to stop chemo and to have the family doctor treat the HTN and not the oncologist. We decided to change local oncologist so praying this was the right decisioN. We were told they will likely try to do 7 weeks of radiation and chemo during this time at MDA. So I guess DH will rent an apartment and I will travel back and forth from WV. At least most of my work is virtual. I truly hope and pray DH doesn't have to go through radiation or surgery. I feel so much pain for him and helpless that I can't do anything to make this better. I've read some post where PET/CT show some activity and turn out to be negative once the biopsies are completed. The last CT was in Jan and was clear or at least appeared to be at the time. 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

That is wonderful that your husband is able to go to MDAnderson for treatment. I am sorry you may be separated for a bit, but that's cool you can work remotely and join him at least part of the time. I work from home too as a Research Associate. Love it. Keeps my mind busy too!

Please just don't let your imagination go crazy. I so wish my CEA was single digit. It's like 74 last check. Seems your dh has a ton of hope for treatment at this point. And you are blessed that he is able to travel to such a great hospital. 

Nobody wants 7 weeks of chemo and radiation; but if it ends up being the best plan I pray for strength and patience for both of you! This is so hard for you caregivers.  I can't imagine. Hang in there. I hope some other members here have some medical advice. 

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

Sometimes is really good to have change, especially in doctors and it sounds like MD Anderson is treating him well.  It will be helpful once he gets the results back and then you can go from there and get some type of plan going forward.  If you are going to the radiologist oncology then they can also weigh in on the situation.  Waiting is a hard part but wishing him well.  Glad that you can work remotely and hope that your husband's situation can be dealt with and a new journey forward.  Radiation and chemo helped me immensely.  I'm so glad you are such a wonderful caregiver.  Your husband must be very proud.

Kim

Pamcakes
Posts: 100
Joined: Jan 2018

Thank you Kim and Beth. My job has been a blessing during all of this. DH's has been as well. when first diagnosed the surgeon sent us to a radiation oncologist, but the local oncologist didn't feel radiation was needed so we did not do it. I know we can't look back and think what if we would have done the radiation. MDA has been wonderful. We are so blessed to be able to go there and whatever the biopsies turn out to be I know he will be in great hands. We have been joking that he may enjoy the bachelor life for a week or two if he has to go! We are leaving for a vacation this weekend and luckily this will be a great distraction! Thank you for you kind words and encouragemen!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Radiation isn't a bad thing. I know some people have issues with burning skin but I had no side effects at all so it's the treatment I prefer. If it's in the lining, I can't see them doing radiation, though. They can't risk damaging it and causing an opening, I'd think. Just my opinion, though.

I hope you can get away and have a great time. We need all the breaks and feeling normal times that we can get.

Jan

Pamcakes
Posts: 100
Joined: Jan 2018

Thank you Jan, I guess I haven't really paid much attention to radiation and reading up on experiences since we've not crossed that bridge at this time. You are definitely a strong lady!! Thanks you for the encouragement. 

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

Radiation was literally Hell on earth for me.  

I know, call me Debbie Downer, but nobody should go into it thinking its going to be a doddle. Prepare for the worst while hope for the best. 

Tru

Woodytele
Posts: 163
Joined: Apr 2017

the info you gave, doesn’t sound as terrible as it could be. CEA is very low, scans possibly see nothing.  Cancer is obviously something none of us want, but your husbands information actually sounds as if there is lots to celebrate.  I would be encouraged with this info, radiation and surgery could really knock the cancer back as well.  Nobody wants radiation or surgery,  I have had both, you stay strong, do what you have to do, and do the best you can. Stay strong and positive. 

Pamcakes
Posts: 100
Joined: Jan 2018

Very true! Thank you for tHe reminder to celebrate any postivites. It's easy to forget at times and to get sucked into the negative. 

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

first enjoy your vacation! Second I hoping since his last scan was clear these are just inflammation and nothing of concern. I am glad you have good doctors and a plan. Thinking of you!

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

Hope you enjoy every moment of that well deserved vacation.

Kim

mondo66
Posts: 1
Joined: May 2018

Recently diagnosed stage 3B colorectal cancer. It has now spread to the liver after only 30 days. I just started Chemo but was on track in a week for radiation to shrink the tumor. The oncologist said he was going to do that now becuase liver cancer is incurable. Just use chemo and wait out for me to die in 2-3 years. Didn't offer any other plan to help me live. I know there are other ways to address this, any ideas. We are seeing a new oncologist tomorrow becuase the one I have clearly donesn't care if I live or die. 

I'm 37 and a single dad with two loving parents, thank god. But I need a plan to save my life. 

Armand

Twinzma
Posts: 226
Joined: Jan 2018

Glad you have found a new doctor fast. Plenty of people on this forum have been NED for years (no evidence of disease) after having mets to the liver. Seriously, the quack you saw should not be in practice! Best wishes that the your new Dr. is the right one for you. 

 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I had over 20 tumors in both lobes of my liver when I was diagnosed in February 2016.  There are other options for tumors in your liver such as Y90 therapheres, which are radioactive beads that are injected through your femoral artery and travel to the liver tumors to kill them off.  I had Y90 in April 2017.  They can also put chemo directly to your liver with the same method, or you can get an HAI pump that many on this site have had to treat the liver tumors.  If there are just a few, then they can perform ablations to kill the tumors.  I had a microwave ablation done on a large tumor in the left lobe of my liver in January 2017.

You need to ask for referrals to get these procedures - they are done by interventional radiologists.  Except the HAI pump is placed by a surgeon. 

Praying that you get a new doctor that wants to help you beat this!

Joan 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Some of these oncologists can be so oppressive! It's one thing to be honest and realistic, but I believe in having hope, and a plan. My oncologist told me the same recently... there is no cure to mets to liver, we can just do our best to manage it. Well, start reading and researching... you'll find cases where people live a long time, or shrink the tumors, or eventually have NED.  Anything is possible. Hang in there! Praying you find a better doctor soon. Keep getting opinions until you're satisfied. 

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