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Really scared

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

Clint and I went in for his pre-surgical consult today with Dr. Lin at U of M.  A couple of hours earlier he had a CT scan.  All seemed well as we went over procedures and questions for the scheduled Oct. 9 surgery.  Then Dr. Lin came in and said there were problems seen on the CT scan.  1)  Clint has a small pulmonary embolisum which must be treated with twice daily shots to thin his blood followed by insertion of a screen to prevent any clots from moving into his lungs, heart or brain.  Even worse, a spot not seen on the previous CT scan shows up on his liver (7mm).  He will have a MRI on Monday evening possibly followed up with a liver biopsy.  Dr. Lin said that if it is cancer, surgery is no longer an option.  

Clint has been feeling fine and gaining weight.I just finished my own radiation and felt we were finally on a more positive path.  If anyone has suggestions or experience please let me know.  Joan

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Oh Joan I am so, so sorry. Larry had a terrible scare with testing before surgery. The "spots" ended up being an infection. They dia ultrasound bhronoscopy to retrieve samples from the lungs, trachea, and lymph nodes. His results were negative. Surgery was rescheduled. Larry did not have pulmonary embolisms until 2 months post op. I do know however that esophageal cancer and the treatment for it can cause blot clots. Please know you are in my prayers and keep us posted.

Laura

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

Clint had his MRI on Monday and is scheduled for a biopsy of his liver next Monday.  Clint is somewhat reluctant to attend the esphogectomy meeting at U of M tomorrow.  I am inclined to encourage him to come in case he can be rescheduled.  Laura, can you tell me if some of those who attend this support group have faced recurrences/liver mets etc?  Would you suggest we wait until we know the outcome of the tests?  I'm feeling so helpless as we keep waiting.  I can tell Clint is starting to feel discouraged with the constant setbacks.

Joan

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Joan you must be beside yourself. Yes there a few that have had recurrences. Once in the past 9 months they have announced of someones passing. About 1/3 of them have had to have follow up chemo. Larry as well was very discouraged by the setbacks. I think I was more terrified than he. If it were me, I would not attend. You can always go next month. Dr Orringer will be at next months meeting. Concentrate on staying healthy and focused right now. Please, please keep us posted.

Laura

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

Laura,

Thanks for your reply.  I did call the nurse who works with the support group and she gave me the same recommendation.  I think I'm grasping at straws right now.  I did make an appointment to see a nutritionist next week when I meet with the onc for my BC and I am going to request an appointment with psych onc.  to make sure I'm handling this as best as possible both through activities (walking, keeping active, mindfulness meditation, and medication as necessary).  I know that stress and depression are only going to make outcomes worse for both of us.

Joan

morley
Posts: 24
Joined: May 2012

Joan

U of M also found blood clots in my lungs in my CT scan before surgery and I started on twice daily Lovenox injections. While they were somewhat painful and left lumps and bruises, I found ice packs before and after the injection helped. I had an ultrasound of the veins in my legs to make sure I didn't have clots there. No other clots were found and so I didn't need the screen placed.

I did not have any spots in my liver before surgery, but the did find a 4 cm spot in my liver almost 1 year after my THE surgery. Today I just finished SBRT radiation of the liver tumor. It was 5 high-dose, narrow focused treatments (total of 60 Gy). When the CTScan found the spot on my liver they biopsied it and found it was esophageal cancer spread to my liver. I will have a follow-up CT scan in two months - hopefully the tumor is smaller at that time.

I do hope Clint is able to still have his surgery. If I can answer anything else let me know.

Dave

 

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

Dave, 

Thanks for the info.  I wonder if Clint would be a candidate for SBRT radiation if liver mets are found.  I am also going to ask that he be tested for HER 2 asap.  

He seems to be doing ok with the injections (I am afraid to look at needles but somehow am managing to give him the shots).  He will need to stop them for a bit before the biopsy.  I'm hoping and praying for a benign result.

 

Joan

morley
Posts: 24
Joined: May 2012

When they did my liver biopsy they not only checked for cancer, but also tested fot HER2. You should ask at biopsy if they will also test HER2

Dave

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

When they checked for HER 2, was it done using liver tissue?  I think he is having a needle biopsy and wonder if they can do a more extensive biopsy now because of the blood thinners he is on.  Thanks I am going to follow up on this.  Thanks.

Joan

morley
Posts: 24
Joined: May 2012

Yes, they used the liver tissue to check for HER2. My biopsy was ultra-sound guided to be sure they were getting tissue from the lession they saw on CT Scan. They took 2 cores of tissue during the biopsy.

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

Dave,

Thanks so much for the heads-up.  I called Dr. Urba's office and they are going to request the HER2 test.  I never would have known this was a possibility without your message!  Are they just doing the radiation or chemo too?  Please let me know how you progress.  

Joan

morley
Posts: 24
Joined: May 2012

Joan

I had met with Dr. Urba first and she went over the couple if different chemo options that we could pursue. She said she had talked about my tumor with radiation department and set up consult with Dr. Lawrence to see if I would be able to get SBRT treatment. We asked what she would recommend,  chemo vs. radiation, and she said if SBRT was an option thats what I should do. 

I had Mapping/simulation and then 5 SBRT treatments (Tuesdays and Thursdays). Dr. Lawrence says that over the next month the cancer  cells should be dying and turning to scar tissue. I have follow up CT scan in two months and Dr. hopes by that time we start to see some shrinkage of tumor (but warned sometimes they don't see it for 5months).

I still have my regular 3 month checkup with Dr. Urba scheduled for later this month, but Dr. Lawrence says I can probably cancel that and just wait until I see him in a month. I am waiting another week or two before I make that decsion - sometimes I just need the extra security blanket :)

So far the plan is no chemo, unless other tumors show up (probably should say UNTIL other tumors show up - Dr. Lawrence says the odds are against me in that about 2/3 of the time, additional tumors come later) If/when other tumors come, we deal with them case by case and weigh treatment options. Chemo option sounds like chemo for life program with scans every 2 months to make sure it it still working. I'm only 56 (almost 57) and don't really want to face weekly/biweekly chemo treatments for extended periods.

SBRT is supposed to be about 90% effective in killing tumor, so that is what I am hoping. I just place it in God's hands and pray he gives me the peace to face whatever comes my way.

Dave

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

Today Clint was scheduled for a liver biopsy using ultrasound guidance.  The radiologist explained that it was a very small tumor and might be difficult to locate and get enough material for a biopsy.  Sure enough, they were unable to find the location and sent us home.  His case was already scheduled to be discussed at tumor board this Friday so now they will try to come up with a plan without having the biopsy...and without knowing if he is HER-2.  I doubt they will do anything until he has finished his month of Lovenox and maybe had a screen inserted.  In the meantime, I feel like this cancer just has more opportunity to spread and become less treatable.  

Does anyone have suggestions?  Places for 2nd opinions if necessary?  

Thanks.

Joan

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Please email Dr Orringer with your concerns. Also call thoracic nurse on call. Dont let another Dr in another department take over and delay this. Dr Orringer or Dr Lin will both email you back! Especially Dr Orringer. He wont let this go. Larrys was taken to the tumor board without a biopsy. The scans are good enough. Hang in there and good luck. Keep us posted.

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

I will email Dr. Orringer (I don't want him out of the loop) and Dr. Lin (if I can find his email).  I spoke to the thoracic nurse earlier and she originally thought our case options had already been discussed and tumor board and was planning to talk to Dr. Lin.  She mentioned a possibility of scheduling THE surgery where they would first biopsy the liver.  I don't know if she meant they would stop if mets were found.  She then called back and left a message saying it had not yet gone to tumor board but would be sent there this Friday.  I also called Dr. Urba's office who confirmed the schedule but could give me no further info about options.  She said we might not hear back until next Monday or Tuesday.

Hopefully, Dr. Orringer can help pull things together.  Thanks.

Joan

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

I am glad that you contacted nurse. I know it may not seem so, but U of M is really very experienced in EC. You will meet people that have come there for treatment for EC from all over the world, not just the country. Dr Orringer is still in the hospital, just not in the surgical arena from what I have heard. Another patient has been corresponding through email with him. Yes I'm afraid they may stop if mets were found during surgery. There is a man from Commerce who had clean pet/ct, he went in with one of the surgeons from U of M and they found it in his liver. He had to go through more chemo and radiation, targeted radiation. I believe it has been about 18 months and he is still recovering, but they believe it has worked. My daughter sees him quited often. She said heis thin and very tired, but all in all is doing well. I hope this is not the case for you and Clint. Please keep us updated.

Laura

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Joan if you are on facebook you really should consider joining CSN Esophageal Cancer Group. You can send me a friend request and I will add you. There are always so many responses to questions that you may have. I have found it to be such a blessing. My facebook is Laura DeSmith. There is also a spouse/partner pritvate group that is very helpful as well that nobody else can see...a very special place.

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

Laura, I sent a request to your facebook page but don't know how to reach the ESN Esophageal Cancer Group.  Do I need to do that separately?  I mostly just folow a few friends/family on facebook but have am not very knowledgeable or active.  Sounds like a good spot for me though.  Please let me know what more I need to do.

I did hear back from Dr. O.  He has been following Clint's case but suggested there are only a couple of options: Surgery and hope the lesion is not cancerous or wait two/three months for another CT and see if it has grown.  It seems impossible to make such a decision without knowing what we are dealing with.  Waiting seems like asking for even more trouble.  Even if it's benign, his primary tumor (which is not NED) is likely to spread.  I plan to write to he and Dr. Lin again tomorrow.

Thanks for all your support.

Joan

 

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

I added you to the CSN page, you cannot get there on your own. You will see it there this morning. I am so glad you were able to make contact with Dr Orringer. I agree with you, I would not wait the 2-3 months. Larry still had much of his original tumor left at surgery as well.I would want it out. If the liver is cancer then they can deal with that later and U of M has been quite successful with that. If Dr Orringer's team is willing to move forward then I would jump on it. See you on facebook, you will really like it there!

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

Things are not going well.  The tumor board suggested another MRI on Nov. 6 to see if there is growth in the liver lesion.  I pitched a fit to Dr. Lin's nurses (the only people I could talk to directly).  Dr. Lin called late that night and said he had spoken to two radiologists who looked at Clint's MRI and they feel there is 80 - 90% chance it is mets.  He offered a PET scan which is being done tomorrow.  I can't stand just waiting as he still feels we should have another MRI Nov. 6 or LATER.  

I have sent referrals to Mayo, Johns Hopkins and MD Anderson and we hope to get a second opinion and a more definitive treatment plan.  I hope they will include liver specialists and radiology interventionists.  If anyone has experience or knowledge of these facilities especially in a case like Clint's I'd appreciate input.  I think it will take longest to get into MD Anderson.

 

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

I am wishing you the best on the MRI. I dont know how to help you  get on the fast track for other opinions. Hopefully someone can help you. Have you spoke to the oncologist to see what the treatment plan would be if this is a met? I scrolled through posts on here and the facebook page to see if I could find anyone in Clint's situation where the hospital went ahead with surgery when a liver met is suspected. I am sorry that I could not. Maybe try to reach out to someone who was turned down for surgery with liver met and see what there options were. There are many surviving fighting fours. Still praying that this is not the case. Please keep us posted.

Laura

JKGulliver
Posts: 82
Joined: Apr 2013

My husband and I did go to Mayo for a second opinion.  He is Stage 2 N0 M0 when first diagnosed.  He also immediately joined an extremely aggressive clinical trial.  We are now through it and John had his esophagectomy in September.  Mayo is extremely thorough.  Once you get in, they are also very aggressive.  Mayo often asks that you come and stay overnight the day before your appointment.  Very early in the morning, the next day (we started at 6:15 a.m.) you will find they've scheduled you with a long line of tests.  They repeated many of the tests previously done by our oncologist in the Twin Cities.  They do all the lab and test analyses in-house, the same day.  By 4:00 in the afternoon, we had the results.  In our case, we elected to stay on the treatment path we started.  However, if we'd gone with Mayo, treatment would have started the following day. Our situation is different from your situation.  And maybe you know all this about Mayo already.  But, our experience was identical to what other people have told us about Mayo.  

I don't know your insurance, but we are being treated by Minnesota Oncology, part of the Allina system in the Twin Cities.  We are very pleased.  

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

We live in Michigan and currently being treated at U of M.  We were happy to be there as Dr .  Orringer would have been doing THE.  However there was a 10 week backlog after his chemo/rad and when they found problems with liver and pulmonary embolism.  Now it is still in the hands of the surgeon here.  Clint had a PET/CT Friday and is scheduled for another CT November 6.  We want some definite plan and treatment.  We hope we will get more answers at Mayo but would prefer to get any long term treatment at U of M close to home.  What clinical trial were you in?  What did Mayo recommend ? Was it different from what you chose?  We are willing to be aggressive if there are not huge long term quality of life costs...it's a tough choice...especially if he is stage 4.  Mayo did say they wanted another CT when we arrive which doesn't make my husband happy as since June he has had two PETs, 2 MRIs and this would be his fourth CT.

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