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Joel C ??

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Joel, how are you doing? I think of you often and how you helped me soon in my husband's journey with EC.

Angie, wife of Larry, dx Stage IV EC June 2011

Joel C's picture
Joel C
Posts: 172
Joined: Mar 2011

Hi Angie,

Thank you for checking in on me I really appreciate that. I’m doing okay, not great but okay. As you know it has been two years since my MIE and I still have lots of pain in my right rib cage. Also over the past month nausea and fatigue have increased significantly. I had a CT-scan a few weeks a go and they found nine lymph nodes in the upper chest area that have increased in size by ~25%. There is a possibility that the swollen are caused by and infection but considering they in the same spot as the malignant node that was removed last October during my recurrence it is likely cancer. Considering I have opted for no additional treatment we’re just going to wait three month and scan again.

How are you and Larry doing? I hope as well as possible.

Regards,
Joel

ShellyMac
Posts: 18
Joined: Jun 2012

Hi Joel.

I am very sorry to hear that you have been feeling so poorly and about your questionable scan results. I feel a kinship with you as we both had our surgery done at B&W and I had the same paratracheal node recurrence. I hope that the increase in the nodes size is due to some kind of infection, maybe that is why you feel so badly. You are very strong and brave and exhibit such grace.

I am a month out from having the surgery to remove the cancerous node, along with many, many other nodes in my neck which tested negative for cancer. Now if my doctors could just agree on how to proceed. My local oncologist says intense chemotherapy and no radiation due to the risks of damage to healthy cells, but Dr. Bueno feels very strongly that I should have both because I am still young (47) and strong. We meet with Dana Farber team (Dr.'s Abrams and Mamon) on Tuesday and I will do whatever they advise. Either way, I know the road is long but I am trying to be strong. I, as I am sure you did as well, truly felt that after my MIE surgery last January this was behind me.....little did I know.

I am praying for you and hope you feel better.

Warm regards,

Shelly

Joel C's picture
Joel C
Posts: 172
Joined: Mar 2011

Shelly,

I’m happy to hear that they took many additional nodes out during the surgery to remove the recurrence node. I’m not sure why they didn’t do that in my case considering we both had our surgeries at Brigham’s. I have a feeling that the doctors are learning as they go and when they saw that mine has likely returned in surrounding nodes in less than a year they decided to be more aggressive with your surgery. Good luck going forward and if you could keep me posted on your progress I would really appreciate it.

Thank you,
Joel

NLMCEM
Posts: 52
Joined: Aug 2010

where were your nodes? I am sitting here waiting for meeting with surgeon to remove 1 of the larger nodes possibly in my husbands Lung. It has me on edge for them to go into his lung and not on the side but more in the middle. He has actually 5 nodes that light up 2 on one lung and 3 on other. One doctor said it is 98% chance its the esophageal cancer and thought chemo should just be started right away. The oncologist says it could by 2% be something else or another cancer and wants to know before deciding what the best chemo would be.
So sorry you are having troubles. My husband has not been right since surgery he did have to have the THE because they also had to remove his gall balder which after testing it was cancer free yet enlarged and very bad shape.
So far no other nodes or organs show cancer. I am just trying to get as much information about the lung nodes to know what way is best for his quality of life. He so badly wants to take me to Europe next year and yes I would love to go ONLY because that is what he wants, but at the same time I want him here with me and in the best healthy condition he can have under the circumstances.

EC Fighter Caregiver,
Carolyn

ShellyMac
Posts: 18
Joined: Jun 2012

Hi Carolyn.

I am sorry to hear about your husband's possible recurrence. Hopefully if it is, it is contained and that is good news.

In my case, when I had my six month scan a left paratrachial lymph node in my neck lit up. When biopsied it proved cancerous and I had it surgically removed on 9/5/2012, along with 17 other nodes in my neck which tested negative for cancer. I will have chemo and most like radiation as wel in a week or so.

I am praying for you and your husband and and am sending positive thoughts your way. Hold onto hope!

Warm regards,

Shelly

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Joel, I'm so sorry to hear about your ongoing pain plus nausea and fatigue. Hopefully, the nodes are due to an infection that may be causing the fatigue and nausea.

Larry and I are doing amazingly well considering the last year we have had. My treatment for BC lasted from Jan to the end of August, but I'm finished now. Our granddaughter ( one of the twins that required open heart surgery one month after birth) is doing great. Larry had a good scan the first of June and has been off chemo since. He just had another scan that showed stable. But he did have a lymph node on the side of his neck show up and feel sore for a few days, but the CT says the lymph node in that location is necrotic. (?) So, the plan is to wait and watch for a month. In any case, he will have a PET before the end of the year. He has been feeling good, we were able to take and enjoy a trip, and he has gained back the weight he lost when he was first diagnosed. So, we continue to enjoy each day as it comes.

Please keep in touch.

Angie

NLMCEM
Posts: 52
Joined: Aug 2010

Shelly thank you for responding. So sorry for your recurrence but glad you have the surgery behind you for that. Hoping you make it through the chemo and possible radiation with little to no trouble.

I am doing my best to stay strong for my husband. He has a great attitude and we are enjoying our life together as though nothing is wrong. We have a medicine bag and fluids we carry every where we go just in case we get stuck any where :) We both like the doctors we have but when they bring someone else on board I still check them out as I did the others. I want him to continue to have the best possible team of doctors he can. I am sure his doctors would not bring someone on board who is not highly qualified, I just want to know they are.

EC Fighter Caregiver,
Carolyn

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