Length of Time Before Treatment

Posted by emersonmoon @emersonmoon, Mar 13 11:51am

I feel like it’s taking so long for my husband to get to the point of active treatment; is all of this waiting normal? He’s had a CT scan and a Pet/CT scan, and the surgeon is supposed to be scheduling for outpatient surgery to put in the chemo port/feeding tube. The doc said he needs to put in clips for possible radiation later as well. He also wants to be sure the mass is indicative of esophageal junction rather than gastric cancer. The pet scan didn’t show spread but one lymph node lit up (near the mass). He wants to see if the lymph node is cancerous and he also said it’s possible there are small cancer cells the PET didn’t show. No staging yet. The first course is going to be chemo, then hopefully surgery, but we don’t have a schedule yet. The team has to meet up and collaborate on a course of action. I’m so worried this will get worse as we’re waiting. Also, it feels like through each step it’s hard to determine exactly what’s going on. I thought the CT and PET/CT scan could give us more certainty but that seems not to be the case. I think we’re both trying to stay in the moment right now.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

First, I'm sorry about your husband's diagnosis. It's an extremely shocking diagnosis to hear. You don't mention the specific time frame your Doctor is suggesting, but believe me, it never seems fast enough to conduct the next treatment step. I would suggest you communicate with your medical team specifically about your question and concern on the timing. They must have a good reason not to be concerned about the tumor's growth in conjunction to the schedule, but it's ok to ask and understand what that is. Again, you will always be feeling anxious to have treatments move quickly. I was very anxious about my diagnosis and it always seemed like the process should have been faster. I've finished my chemo, radiation and surgery and knock on wood, have clear margins and no current signs of spread. The above process from diagnosis to surgery was six months. There is time built in for healing between chemo/radiation and surgery, along with complications I endured (COVID 2 week delay
). I hope things progress quickly and healthfully for you and your husband. Best to you!

REPLY
@lionsfan

First, I'm sorry about your husband's diagnosis. It's an extremely shocking diagnosis to hear. You don't mention the specific time frame your Doctor is suggesting, but believe me, it never seems fast enough to conduct the next treatment step. I would suggest you communicate with your medical team specifically about your question and concern on the timing. They must have a good reason not to be concerned about the tumor's growth in conjunction to the schedule, but it's ok to ask and understand what that is. Again, you will always be feeling anxious to have treatments move quickly. I was very anxious about my diagnosis and it always seemed like the process should have been faster. I've finished my chemo, radiation and surgery and knock on wood, have clear margins and no current signs of spread. The above process from diagnosis to surgery was six months. There is time built in for healing between chemo/radiation and surgery, along with complications I endured (COVID 2 week delay
). I hope things progress quickly and healthfully for you and your husband. Best to you!

Jump to this post

Thank you for your response! First off, I’m sending you good vibes for recovery! They gave my hubby a date for the surgery to put in the port and feeding tube (about 3 weeks from now). The surgeon also wants to establish for sure where the mass is (he thinks junction but wants to be sure it isn’t stomach only). He’s going to put in the clips for radiation. We have an appointment with the oncologist next week and I’m thinking he’s going to go over what this first part of treatment will be. The surgeon said chemo will be first but we don’t know how much/length of time for that and if there will also be radiation (isn’t radiation what helps shrink the tumor?) at this time. Surgery is projected for after that, as long as everything looks “good”. We’re anxious about what chemo will be like but also relieved that something is happening.

REPLY

I was on a clinical trial of FolFox5 chemo and five rounds of radiation five days per week. I had a 6 cm tumor shrink to micropic cells. Yes, radiation did the shrinkage. Is he having photon or proton beam radiation?

REPLY

I have had 4 cancers.it takes about 3-4 weeks before treatment lots of prep. I get the anxiety nervous but the wait is to get the precise location size etc to get the very best outcome. Foe now enjoy your selves. Try. Please. Be brave. And have hope. You can do this

REPLY
@lionsfan

I was on a clinical trial of FolFox5 chemo and five rounds of radiation five days per week. I had a 6 cm tumor shrink to micropic cells. Yes, radiation did the shrinkage. Is he having photon or proton beam radiation?

Jump to this post

They haven’t mentioned radiation yet but we go to see the oncologist on Wednesday. I’m not sure if he’ll be able to tell us what the next course of action might be since the surgeon wants to do laparoscopy to be sure of what’s going on.

REPLY

We went to the oncologist yesterday and he wants my husband to do 6 weeks of chemo and radiation, with chemo one day a week for 2 1/2 hours each time and radiation 5 days. The goal is to shrink the tumor as much as possible and hopefully kill any cancer that could be floating around (one local lymph node looks not so great). I don’t know if this will change after the surgeon does the laparoscopic exploration when he puts in the chemo port and feeding line. The oncologist seemed surprised that he was doing the lap. exploration, for some reason, and said he needed to get with him. I don’t know what that’s all about. The surgeon told us he wants to be absolutely sure what he’s dealing with when he does the major surgery. I was a little bit unnerved by the discrepancy between them. I’m sick with worry about what these treatments will be like for my husband and am praying they do what they are supposed to do. He said the chemo was a lower dose option. I was looking into Moffitt this morning but it’s pretty far from us and I feel like we’re on a path now, and I’m probably overreacting. I’ve read that Moffitt and Advent Health interact quite a bit as far as updated treatment methods which could be good (my hub is going to Advent for the surgery and to Florida Cancer Specialists for the oncologist). The chemo/radiation route seems normal to me but I don’t know why the two doctors haven’t collaborated yet. Cancer sucks.

REPLY
@emersonmoon

We went to the oncologist yesterday and he wants my husband to do 6 weeks of chemo and radiation, with chemo one day a week for 2 1/2 hours each time and radiation 5 days. The goal is to shrink the tumor as much as possible and hopefully kill any cancer that could be floating around (one local lymph node looks not so great). I don’t know if this will change after the surgeon does the laparoscopic exploration when he puts in the chemo port and feeding line. The oncologist seemed surprised that he was doing the lap. exploration, for some reason, and said he needed to get with him. I don’t know what that’s all about. The surgeon told us he wants to be absolutely sure what he’s dealing with when he does the major surgery. I was a little bit unnerved by the discrepancy between them. I’m sick with worry about what these treatments will be like for my husband and am praying they do what they are supposed to do. He said the chemo was a lower dose option. I was looking into Moffitt this morning but it’s pretty far from us and I feel like we’re on a path now, and I’m probably overreacting. I’ve read that Moffitt and Advent Health interact quite a bit as far as updated treatment methods which could be good (my hub is going to Advent for the surgery and to Florida Cancer Specialists for the oncologist). The chemo/radiation route seems normal to me but I don’t know why the two doctors haven’t collaborated yet. Cancer sucks.

Jump to this post

@emersonmoon, keep asking questions of your team. The more you know and understand, the more you'll have confidence in the care he is getting. You're a great caregiver and advocate for your husband. @dsh33782 went to Moffit for esophageal cancer.

If you'd like to get a second opinion from Mayo Clinic experts, you can submit a request here: http://mayocl.in/1mtmR63

REPLY

It sounds like your husband is pretty much the same position as I was two years ago. I went to Mayo in Rochester and was absolutely amazed at the treatment I received. They were so organized and knew exactly what each department was doing at all times it was unbelievable. There was never any question of anything. They literally even made every single appointment for me. They also have Proton radiation, which didn't even know existed but it's state of the art & not many facility's have it,
There is free lodging nearby if needed (Hope lodge). We stayed at Staybridge (not free) & it was great. I know there are other cancer centers are good too. I'm just saying it might be worth to look into going to Mayo if you can. If you look my posts you'll see my story. Like many others here, things went pretty well.

Take Care

REPLY
Please sign in or register to post a reply.