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Old 08-08-2019, 10:55 PM
 
Location: prescott az
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Jill: Based on what you have told us so far, I would definitely take a trip and room in somewhere near Moffitt for as long as you need to. Glad you are getting some answers now. Please keep us updated !!
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Old 08-08-2019, 11:45 PM
 
Location: on the wind
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I'm sure Moffitt's patient social services could suggest places to stay while in treatment. There are probably sort term rentals that cooperate with them, possibly lower cost too.
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Old 08-09-2019, 04:15 AM
 
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Originally Posted by Parnassia View Post
I'm sure Moffitt's patient social services could suggest places to stay while in treatment. There are probably sort term rentals that cooperate with them, possibly lower cost too.
I have heard (from the nurse at my cardiologist’s) that Moffitt allows you to have a whole apartment for free, if you have a caretaker stay with you. To be honest, I haven’t actually confirmed this with Moffitt yet, because if it isn’t true or is a gross exaggeration, I want to at least live with the fantasy for a couple more days. But maybe I should check this out ASAP because it might be true, but they might have limited availability.

Both my Mom and sister have volunteered to be caretakers (I’m not sure my husband can afford to take a leave of absence from work) and I hope they will come for at least some of the time (they both live in Mew England and I am in Florida, so it is not trivial for them to come and stay here.) If not, I might be able to get some local friends to fill in the gaps.
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Old 08-09-2019, 01:05 PM
 
Location: Denver CO
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This is a real roller coaster, isn't it? But I think ultimately, it sounds hopeful, and that's not a bad place to be at this point in the process.

I agree with everyone saying to do the treatment at Moffitt, when you post about them, your trust in them comes through and that is essential. If they provide a free apartment to stay there, so much the better, of course! But they may have other referrals or you can check airBnB, etc. If you are posting on cancer support forums, people in the area might also have specific local resources to share.

As far a choosing between "poison, slash and burn" (a/k/a chemo, surgery and radiation), I'd say to ask very carefully about how including vs. omitting changes the prognosis and then decide. They all have their own huge downside, but if they can cure you, it's worth it, isn't it?
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Old 08-09-2019, 02:17 PM
 
Location: Bella Vista, Ark
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Quote:
Originally Posted by Jill_Schramm View Post
Wow, what a story about that board certified oncologist. The crazy thing is that I believe every word. Institutions do protect their own ... sometimes at the expense of the general public.

I should also say that not only I want to go to Moffitt for the actual treatment because I trust them, but also because I just do not trust my local place, especially for chemo infusions. Just too many screw-ups and miscommunications there. Besides, the more the new local oncologist tried to sell me on it, the more suspicious I got.

And finally, while the oncologist at Moffitt was completely neutral about my prognosis (we just have to see how you respond to treatments, there is no way to know ahead of time), the new local oncologist was so bright and bubbly about how curable my cancer was. My husband was eating it up, but he hadn’t been at Moffitt earlier in the day (too far for him during a work day), so he couldn’t make the comparison. But for me, it just screamed: Moffitt = serious, honest, reputable; Local cancer specialist chain: sell, sell, sell!

go to Moffitt as soon as you can, take a caregiver with you and proceed on with your treatments.I am sure everything will work out. Keep us updated as you feel like it.
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Old 08-09-2019, 03:52 PM
 
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I just spoke with a cancer navigator at Moffitt. Yes! There is free lodging available and I don’t even have to have a caregiver with me all the time, if I am able-bodied. Only the days I get chemo and the days after I get chemo (in case their is an emergency in the middle of the night). The accommodations are pretty basic and the cooking area is communal, but I think that will be OK. Trying to be frugal up front because who knows what the future may bring.

I also have an appointment set up for next Friday at Moffitt with both a radiation oncologist and a chemo oncologist. It’s all feeling so real and scary!

I am really hoping my DH continues dealing with this as well as he had. I got my first hint of resistance today. DH in regards to the appointment on Friday with the chemo & radiation oncologists: “Maybe they are just going to give you your PET scan results (he knows I already have the PET scan results) and charge you a lot of money for it?”

Sigh. I had to explain again that Moffitt is on the up & up and they wouldn’t just do that. Besides, our insurance is covering all the rest of my visits to Moffitt.

I get the sense that he just wants me close (good thing usually) and not 2 hours away at this weird Moffitt place he’s never been to.

Might have to gently fight on this front too.
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Old 08-11-2019, 05:40 PM
 
Location: colorado springs, CO
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Originally Posted by VTsnowbird View Post
When we were going through the problems with DH being treated in the south at a general hospital, I mentioned to my sister, who is also an MD, "at least his doctor is a board certified oncologist". She said, let me tell you about board certified oncologists. Before she got married, she joined a dating service for professionals and wound up on a dinner date with an oncologist (board certified). Over dinner, he began telling her about how he decided on treatment plans for his patients, based on a series of signals he was getting through where people sat in the hospital cafeteria. She realized there was something very wrong with him, and got in touch with his department. They knew about him and were monitoring his patients and treatments. But he was still practicing (at a small local hospital).
OMG. You just never know, do you.
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Old 08-15-2019, 02:49 PM
 
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I got my CT scan of the chest results back and unfortunately it looks like I have 3 metastases to the lung. Either that or I happen to have 3 nodules of scar tissue in the area of my lung closest to the lymph node metastases (the right apex) in spite of having never smoked nor had any significant chest infections ever. Highly unlikely.

So, I have 3 lymph node metastases, 3 additional metastases to the lung, no clear idea of where the primary tumor is or was. Plus, my health is perfect. Zero symptoms. I know they want me to start some pretty serious treatment soon, but I really don’t know. Maybe if they knew where the primary was... but I am not in the mood for oncological guessing games and/or scorched earth policy (don’t know where the tumor is, let’s have a wide radiation field just in case), no real prognosis and a lot to lose.

Also ... the ENT who ordered the exam knew he was looking for metastases (I noticed today that it was the indication), the nurse navigator at Moffitt who insisted I bring them the results knew that they were looking specifically for metastases and yet neither told me this. They let me assume that they were ruling out a primary lung tumor (which we already knew was unlikely). I even mentioned this and neither corrected me. Aaaargh. How am I going to get though this if my doctors and nurses will not come clean with me as to what they are thinking about me and my cancer? How am I going to make decisions if all I get are vague reassurances, strategic omissions or false hope? I am just so frustrated right now.

I have my two appointments at Moffitt tomorrow. At this point I want to maximize the integral of quality of life over time. That is what I want. I do not want to play the cancer treatment lottery hoping for a miracle. (I am not a gambler.)

How do I best encourage my radiation and chemo oncologists to approach my situation seriously from this point of view?
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Old 08-15-2019, 06:39 PM
 
1,498 posts, read 878,044 times
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Quote:
Originally Posted by Jill_Schramm View Post
I got my CT scan of the chest results back and unfortunately it looks like I have 3 metastases to the lung. Either that or I happen to have 3 nodules of scar tissue in the area of my lung closest to the lymph node metastases (the right apex) in spite of having never smoked nor had any significant chest infections ever. Highly unlikely.

So, I have 3 lymph node metastases, 3 additional metastases to the lung, no clear idea of where the primary tumor is or was. Plus, my health is perfect. Zero symptoms. I know they want me to start some pretty serious treatment soon, but I really don’t know. Maybe if they knew where the primary was... but I am not in the mood for oncological guessing games and/or scorched earth policy (don’t know where the tumor is, let’s have a wide radiation field just in case), no real prognosis and a lot to lose.

Also ... the ENT who ordered the exam knew he was looking for metastases (I noticed today that it was the indication), the nurse navigator at Moffitt who insisted I bring them the results knew that they were looking specifically for metastases and yet neither told me this. They let me assume that they were ruling out a primary lung tumor (which we already knew was unlikely). I even mentioned this and neither corrected me. Aaaargh. How am I going to get though this if my doctors and nurses will not come clean with me as to what they are thinking about me and my cancer? How am I going to make decisions if all I get are vague reassurances, strategic omissions or false hope? I am just so frustrated right now.

I have my two appointments at Moffitt tomorrow. At this point I want to maximize the integral of quality of life over time. That is what I want. I do not want to play the cancer treatment lottery hoping for a miracle. (I am not a gambler.)

How do I best encourage my radiation and chemo oncologists to approach my situation seriously from this point of view?
Well...sorry to hear this...can understand your frustration

Tho I am not an oncologist expert....I would be equally frustrated..and angry..at life..

In defense of your team.. they really are not used to patients as knowledgeable as you....frequently I am sure they don’t tell the whole story because most couldn’t understand it anyway..

Your last two points are your best approach tomorrow....make clear to both the thoughts you write here..


Then take their treatment plans ..think long and hard...and decide what to do....you can always consent to. Say chemo, but not widespread radiation...I agree that not knowing the primary makes that pretty stupid..
Chemo is systemic...so it will attack the primary..even if no one knows where it is..

Why can’t they identify the primary?.. I don’t get that,,,

We..hubby and I..plus all the nurse sisters and friends we have....have always felt that when any treatment becomes worse than the alternative...then we have the option..and right..to stop treatment..

On the plus side..tho it looks grim now....your age and otherwise good health..is a positive in your out..

Let us know how tomorrow goes...stay as level as you seem to be...no one can force you into anything...
Tho it is likely that some cases, like yours, benefit by combining treatment modalities..

Thinking. Of you
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Old 08-16-2019, 08:58 PM
 
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Thanks Lola!

Well, I had an interesting meeting with the Moffitt head and neck oncologists today. Long story short, they did not believe I had a head and neck cancer. They also thought that if I had squamous cell lung cancer, it seemed like a very unusual case. So, I still don’t know what kind of cancer I have.

They recommended two further tests and said they were going to present my case to the interdisciplinary tumor board next week to see if anyone else had any ideas.

Too tired to provide more details tonight, but this is the gist.
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