Really stuck here, need advice.

nancyann3

Seems hubby and I are about to take a turn in our journey, but not sure the direction yet.

Communication from the doctors has seemed to stopped here and its been a battle. Since last PET on the 30th of June I get the feeling that my husbands health care team is done with him, but no one wants to fill us in. We have went from preparing for surgery, to nothing more they can do for him and being brushed off, in a matter of minutes. I wont go into details about out ordeal last week, but to say the least it was terrible.

I did manage to get some info out of the surgeon last week that he has more metastatic disease in nodes in chest, but no other organs are involved. We were told that we needed to see the med onc now to continue with treatment. After two days of trying to get into the med onc, we finally get an appt. Next week!! and while making the appt, this is what I hear fromt the nurse I am talking to, "I was under the impression we didn't have anymore to offer Steve" she said we had a conference about him and asked if anyone had talked to us. I said no!!! no one has told us anything.

We are shocked here and lost. If this cancer is NOT in any other organs, why would there be noting else they can do? And even if it is. There is still treatment.

We are going to start gathering med records and have talked about seeking treatment else where before this came about.

If anyone can give me some idea what they may have seen in the PET scan to make them do this, please give me ideas.

Nancy

Donna70

Nancy ???
Gee Nancy wish I had some solid advice but all I can think of is to call the onc dr and come out and say are you all done with my husband??? Also, I always get copies of all my scans myself. I worked in the medical field and can understand some of it so I usually get a pretty good picture. I found out drs often do not tell you all that is on the scans until you tell them you are sitting there looking at the report yourself. If the dr said not in other organs but in nodes, I would think there are plenty of options. My friend has mediastinal nodes and lung nodes all cancer involved and now in complete remission after a year of chemo therapy, one pill a day. So think there are other people here like Sherri who could give you more advice. If this was so dismal wouldn't they have started talking hospice? and I feel just like you, nodal involvement is not the same as all over organ metastasis. think your idea of a second opinion or treatment elsewhere maybe justified. My prayers will be with you. take care,
Donna70

sal314

Oh Nancy, I feel for you! We
Oh Nancy, I feel for you! We are soon to embark on that journey as well. I definately, without a question would seek out treatment elsewhere! It is TOTALLY unacceptablel that your doctors are not communicating with you and "giving up"!!

My father has two more rounds of chemo then my mom and I are going to sit down with him and tell him why we think he should seek a second opinion. His EC cancer is not typical and the doctors are being so vague and not giving us answers that are satisfactory! So...I'm starting my research and about to post here to ask if the "experts" what hosptitals around the country would be the best to go to! My dad needs to fight a little harder while he still has strength and the cancer is stable.

It's so hard! Gathering info., trying to figure out where to go and who to see and TRYING to get the most up to date info. on cutting edge treatments! It's exhausting!

Anyway, I will gladly share any new info. I find.

Good luck to you. Keep fighting until you are satisfied! Trust your gut and don't settle until your at peace! You will know when you've found it!:)

Blessings,
Sally

nancyann3

sal314 said:

Oh Nancy, I feel for you! We
Oh Nancy, I feel for you! We are soon to embark on that journey as well. I definately, without a question would seek out treatment elsewhere! It is TOTALLY unacceptablel that your doctors are not communicating with you and "giving up"!!

My father has two more rounds of chemo then my mom and I are going to sit down with him and tell him why we think he should seek a second opinion. His EC cancer is not typical and the doctors are being so vague and not giving us answers that are satisfactory! So...I'm starting my research and about to post here to ask if the "experts" what hosptitals around the country would be the best to go to! My dad needs to fight a little harder while he still has strength and the cancer is stable.

It's so hard! Gathering info., trying to figure out where to go and who to see and TRYING to get the most up to date info. on cutting edge treatments! It's exhausting!

Anyway, I will gladly share any new info. I find.

Good luck to you. Keep fighting until you are satisfied! Trust your gut and don't settle until your at peace! You will know when you've found it!:)

Blessings,
Sally

Thanks for your replies

I have been in shock all day, and I know I need to stay clear to continue on.


Still cant get a doctor to tell us what's going on. Steve's hosp. Stay last week was very upsetting.
The surg. Onc never did come to hosp. Room to see him. The only info I got was from the surg. Onc after stent and j tube placement. He said he has more metastatic disease in chest. I asked him flat out if it was in any other organs, and he said no. He was surprise the med onc. Hadn't talked to us yet. This whole conversation I felt like he didn't have time for us and we were wasting his time.

A nurse from the med onc finally called me back this morning, and this is what I hear from her. "
We had a conference about Steve and I was under the impression we have nothing else to offer him"...........she wanted to know if anyone had told us this. I said NO. Its been three weeks since the PET and when Steve called for results, they told him there was nothing new!!! The surg. Onc wanted him to come in that day, but he couldn't because I was at work with the only car. So an appt was made for a week and a half out. We didn't make it to that date because the stent failed and he went into the hosp. But still no one came to talk to us.

Now we are looking at another week until appt.

I am totally shocked and put off by all this!!

I am in the process of gathering med records and looking into other options.

Thanks for listening

paul61

Time to Move On!!!
Nancy,

I think the way you are being treated by your husband’s medical team is UNEXCUSABLE!!

For you to hear about a conference about your medical options from a nurse staff member in such a second hand fashion is very unprofessional. I would say it is time to move on and quickly!!

Someone owes you a face to face conversation that defines your husband’s current prognosis and future options. If they feel they have nothing further to offer your husband they should indicate why and at least offer some suggestions on where you go from here.

We have heard in this group of other survivors with similar of more extensive metastasis that are moving forward with treatment.

We will be praying that you find better treatment and answers with your new medical team.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0
12/03/2010 Ivor Lewis
2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

nancyann3

paul61 said:

Time to Move On!!!
Nancy,

I think the way you are being treated by your husband’s medical team is UNEXCUSABLE!!

For you to hear about a conference about your medical options from a nurse staff member in such a second hand fashion is very unprofessional. I would say it is time to move on and quickly!!

Someone owes you a face to face conversation that defines your husband’s current prognosis and future options. If they feel they have nothing further to offer your husband they should indicate why and at least offer some suggestions on where you go from here.

We have heard in this group of other survivors with similar of more extensive metastasis that are moving forward with treatment.

We will be praying that you find better treatment and answers with your new medical team.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0
12/03/2010 Ivor Lewis
2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

Unexcusable and unforgiveable
Thanks Paul for your reply. You all make me feel empowered and thats what I need right now.
I feel the survivor leans on the caregiver and the caregiver leans on the med team, so I feel a little put out and lost right now to say the least.
I can only imagine how Steve feels right now, but I know how I feel!

I am trying to reasure him and make sure he knows, I am in his corner!! And I don't give up!! I have promised him that he will be one of the few patients that his med team will not forget! I will make sure of that.

BTW were talking about the University of Louisville, Ky James Grahm Brown Cancer treatment Center!! I for one expected a little more out of them!!

Nancy

MOE58

nancyann3 said:

Unexcusable and unforgiveable
Thanks Paul for your reply. You all make me feel empowered and thats what I need right now.
I feel the survivor leans on the caregiver and the caregiver leans on the med team, so I feel a little put out and lost right now to say the least.
I can only imagine how Steve feels right now, but I know how I feel!

I am trying to reasure him and make sure he knows, I am in his corner!! And I don't give up!! I have promised him that he will be one of the few patients that his med team will not forget! I will make sure of that.

BTW were talking about the University of Louisville, Ky James Grahm Brown Cancer treatment Center!! I for one expected a little more out of them!!

Nancy

NANCY MAYBE???
Working in the medical field myself if it has truly mestatsize and in his chest it might be so bad in the chest that when you open someone up and look just opening them up believe it or not it can spread immediately to other areas of the body, this might be the reason they feel he is inoperable. I am not a doctor but have seen this happen.

I would definately get a second opinion if your insurance allows it.

Keep us posted.

Lori/moe58

nancyann3

MOE58 said:

NANCY MAYBE???
Working in the medical field myself if it has truly mestatsize and in his chest it might be so bad in the chest that when you open someone up and look just opening them up believe it or not it can spread immediately to other areas of the body, this might be the reason they feel he is inoperable. I am not a doctor but have seen this happen.

I would definately get a second opinion if your insurance allows it.

Keep us posted.

Lori/moe58

Thanks Lori
I agree with that also. But for the medical onc. to have no more to offer doesn't make sense. He has only had three rounds of chemo.

Thanks

tb7

Suggestions . . .
Hi Nancy!

When my husband faced metastases (lung nodule and lymph node in his chest, nothing anywhere else), his original oncologist suggested that he needed to move to palliative care. We did not agree and began searching for a clinical trial. After five months of chemo treatments, he is now NED.

I would suggest you explore getting another opinion from a different oncologist and a different cancer center. General oncologists who do not have experience nor specialized expertise in EC are not prepared to fight this disease. You might also want to explore clinical trials like we did. (You can read our story on my profile page.)

Keep challenging the doctors and looking for the best doctor to help fight for your husband and his health.

Best wishes in the quest ahead . . .

Trisha

Tina Blondek

nancyann3 said:

Thanks Lori
I agree with that also. But for the medical onc. to have no more to offer doesn't make sense. He has only had three rounds of chemo.

Thanks

Hi Nancy
I am agreeing with
Hi Nancy
I am agreeing with all of the others here. It is more than time to move on, and get another opinion. Do continue to challenge the drs. The more questions you ask, the better. I am wishing you and your husband the best of luck. Keep in touch, and do not give up, just because those drs have!
Tina

nancyann3

tb7 said:

Suggestions . . .
Hi Nancy!

When my husband faced metastases (lung nodule and lymph node in his chest, nothing anywhere else), his original oncologist suggested that he needed to move to palliative care. We did not agree and began searching for a clinical trial. After five months of chemo treatments, he is now NED.

I would suggest you explore getting another opinion from a different oncologist and a different cancer center. General oncologists who do not have experience nor specialized expertise in EC are not prepared to fight this disease. You might also want to explore clinical trials like we did. (You can read our story on my profile page.)

Keep challenging the doctors and looking for the best doctor to help fight for your husband and his health.

Best wishes in the quest ahead . . .

Trisha

Thanks for your help
I wanted to thank all of you for your replies. We are looking into other places and plan on moving quickly.


Thanks
Nancy