New and need to moan, sorry!

[David1969]

Hi, my husband has been posting for a while and until yesterday I was dealing with things okay and now I am just so frustrated.

Long story short, Dave had testicular cancer and had it removed Sept 06, had an RPLND Dec 06, followed by 2 rounds of BEP in Feb /Mar and we thought that was the end of it. He then had a CT scan Sept which showed 2 enlarged lymph nodes but his markers were all fine so the oncologist thought it was teratoma and to just leave it, we weren't happy to leave it so got it biopsied and it turns out the cancer is back. Initially our oncologist recommended salvage chemo, more likely TIP, we were then going to get a second opinion at Dana Farber and e-mailed Dr Einhorn.

We then saw Dave's oncologist again last week who told us he'd spoken to Dr Einhorn and he has said no chemo just repeat the RPLND but as it was a repeat it was riskier so it should be done either in Indy or by Dr Sheinfeld in New York. Well I spent 6 hrs on the phone yesterday calling Boston to get slides that had already been sent, Hartford for slides that hadn't been sent, other departments for CT's etc etc, I finally secured him an appointment for 10am this morning.

The day got off badly because despite a 6.30am start Dave was still stuck in traffic and a 2 hr journey took over 4hr. He's now called me to say Dr Sheinfeld twon't do the surgery as he thinks it will still spread and he's unlikely to get it all.

I'm now waiting for Indy to get back to us as Dave has an appointment set up with Dr Einhorn for next Tues so I'm attempting to get one with Dr Foster at the same time.

I am just so frustrated, we were so excited when it looked like we could avoid further chemo and now we're in limbo again, I know there's nothing we can do until we see Dr Einhorn, I'm just so sick of my poor husband phoning me and saying he hasn't got good news. I feel bad because I'm not with him but we're from the UK and have been here for 3 yrs but have no family around and have a 2yr and 4 yr old and don't like to keep calling in babysitting favours just in case he does have the chemo because then I'll really need the help, Dave's stressing now in case they say he can have the surgery but only in Indy but we'll find a way to deal with it, that's way down on the list of problems. I just feel like we're being pushed from pillar to post but not getting anywhere, it's 1 step forward and 2 back. We keep being told how rare it is for the reoccurence but that doesn't help, it's happened and we have to deal with it.

I'm sorry to moan on but I don't like to go on at Dave, he's got enough to deal with. Thanks for reading this far!, Jo.

[Fed]

Jo (and David),

I am very sorry to have heard the news of Sheinfeld refusing to do the re-do RPLND. I can't say I'm surprised, though. My best friend, who trained under Sheinfeld, has said that a re-do RPLND is technically very demanding especially after having undergone chemo, and the risks of complications are considerably higher. Hopefully consulting with Foster/Einhorn will produce better results. Have the plans of receiving TIP been on hold, then? I don't believe I heard what ended up happening with David's DFCI appointment from this past Friday (I was out of town).

As far as the "moaning" is concerned, this is what we're here for. This site is for both survivors and caregivers alike. We all try to help in any way we can, and you should feel free to vent, scream, yell, and curse however much you want and need. We're here for both you and Dave.

[Margaret]

Jo,

I am so sorry sweet pea that you have to feel this way. Having cancer is terrible, but being the wife of someone who has cancer is horrible too.

My first thought is that Dr. Sheinfeld really knows his stuff and I would feel confident if he feels it is too risky then he is doing what is best for your hubby and not wanting to risk danger to him. We had a few doctors during our ordeal that did not seem to care about the risk to my husband. Finding Dr. S was great, he did not always give us the news we wanted, but we knew we were in good hands and the best care would be given.

I know the thought of more chemo is very scary...hearing our chemo 'game plan' was one of my darkest days and I remember it very well . You sound like a very strong woman and a great mom....YOU can and will get through this but you are going to need lots of support.

Call in every favor you have...call family members and lean on them, ask friends to help you watch the kids. This is not the time to be full of pride, let people love you and help you. Come here for support....Heck Call ME day or night...I will always take your call. Feel all your emotions and tell yourself everyday that you will win this fight.

I wish I loved in Indy and you and the kids could stay with us...but if there is something you need, we will all try and help.

Hugs!

Margaret
919-215-9464

[Karen]

Jo,
I was reading other David1969 posts that refered to Dave in the third person and was thinking I needed top drink more coffee to figure it out! You are getting top opinions and while more chemo is not something to look forward to it is another step towards a cure.
This Caregivers space is exactly the place to vent, moan, scream, cry...whatever you need to do to get the support you need as well.

[Russell's Mom]

I'm zipping off to work, but wanted to mention...moan away...as much as you need. It has surprised me just how often moaning is the mode that comes up. I could write on and on for a while......I work my thoughts toward the positive, then they get matched with a bigger challenge. It becomes very very difficult! Not impossible though!!! It seems that not a single person that I used to talk with even comes close to understanding me or the situation. I am constantly grateful for the understanding that happens here on this forum! take care, Sharon

[dadmo]

Jo;
From what you wrote it dosen't sound as if Dr. S thinks the RPLND is to risky, he thinks it won't be a cure. It's reasonable to want to kill the cancer first and then do the RPLND. My unprofessional guess is that because of the recurrance the cancer may be beyond the nodes and chemo should not be put off. If you have an RPLND there will be a several week wait before treatment can continue. Please let us know what they say in Indy. Oh by the way if you guys have to go to Sloan for anything you can stay at our place, we're only 45 min away.

[RTC]

Repeat RPLND

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17484927&ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

[mrsdavid1969]

Thanks

Thanks for all your responses, it does just feel better to write it down, and as you said, even the best friends, can listen but if they've not been through it, even with the best will in the world they can only help so much.

Dave's e-mailed Dr Einhorn again to tell him about yesterday and he said we'll just have to see once he's evaluated all of the slides etc and if he still thinks it's the surgery route then he'll get Dr Foster in on the meeting, at the end of the day we'll just go with whatever he says next Tues.

Fed, Dana Farber cancelled our appointment last week because despite 2 phone calls a day for a week, the slides they required didn't arrive until Thursday afternoon, I was so frustrated but other than going into Hartford and hand delivering them to Boston (which I wish I had done) then it was out of my control. They then rescheduled for this Fri but I'm going to have to reschedule again because, Sloane currently have all the slides and I need them in Indy for Tues and can't risk sending them via Boston.

Feel really fed up today but I think it's just the time it's all taking, we know we've got to start some treatment we just want to get on with it.

Oh well off for another round of phone calls to make sure we're all set for Tues.

Karen I've finally got round to setting up my own user name not very original and may still make you double check I'm afraid

Thanks again everyone for their support and for all the support you've given Dave, it truly is invaluable, if it hadn't been for you all and the pm's we've had I don't think we would have questioned anything (very British!)

Jo xx

[Scott]

Jo, you're working with the very best doctors, and you'll have a treatment plan very soon. Hang in there. We're all rooting for David and you.

[mercyriver]

Jo,

I think your user name is very cute and fitting. I was confused myself for a while there! Took me a couple read throughs to pick it up.

Hope you start getting a direction soon.

Becki

[Fed]

Fed, Dana Farber cancelled our appointment last week because despite 2 phone calls a day for a week, the slides they required didn't arrive until Thursday afternoon, I was so frustrated but other than going into Hartford and hand delivering them to Boston (which I wish I had done) then it was out of my control. They then rescheduled for this Fri but I'm going to have to reschedule again because, Sloane currently have all the slides and I need them in Indy for Tues and can't risk sending them via Boston.

You may have to harp on Sloan to have the slides sent. I had a second read done on my slides at Sloan, and after I got my second path report, they said they had shipped them back to the Brigham. Several months later, I went to Brigham to check them out so I could look at them myself in the lab... turns out Sloan never returned them. Make sure that they are actually shipped out to IU.

If there is any way we can help out, let us know. It sounds that, as crazy as things seem right now, things are somewhat under control. Just try to take it day-by-day. We're here for you.

[DennyD]

Thanks for all your responses, it does just feel better to write it down, and as you said, even the best friends, can listen but if they've not been through it, even with the best will in the world they can only help so much.

Dave's e-mailed Dr Einhorn again to tell him about yesterday and he said we'll just have to see once he's evaluated all of the slides etc and if he still thinks it's the surgery route then he'll get Dr Foster in on the meeting, at the end of the day we'll just go with whatever he says next Tues.

Fed, Dana Farber cancelled our appointment last week because despite 2 phone calls a day for a week, the slides they required didn't arrive until Thursday afternoon, I was so frustrated but other than going into Hartford and hand delivering them to Boston (which I wish I had done) then it was out of my control. They then rescheduled for this Fri but I'm going to have to reschedule again because, Sloane currently have all the slides and I need them in Indy for Tues and can't risk sending them via Boston.

Feel really fed up today but I think it's just the time it's all taking, we know we've got to start some treatment we just want to get on with it.

Oh well off for another round of phone calls to make sure we're all set for Tues.

Karen I've finally got round to setting up my own user name not very original and may still make you double check I'm afraid

Thanks again everyone for their support and for all the support you've given Dave, it truly is invaluable, if it hadn't been for you all and the pm's we've had I don't think we would have questioned anything (very British!)

Jo xx

Jo
Dr Einhorn said that he would have Foster available if it was appropriate for the same appointment didnt he? Sounds like you are set

[mrsdavid1969]

Thanks Denny

Thanks again for your help Denny, you've been a great support.

One other moan though, why is it so difficult to get notes, scans etc transferred, why do people not understand the value of them?

Thanks to Fed I kept on at Sloane about getting CT scans and the path slides sent on, we believe the slides are there but will have to phone Indy to double check and the CT scans will be arriving at our house on cd later today but only because I kept phoning, why is it always such hard work? I find it mentally draining, it's hard enough dealing with what we're dealing with yet I have spent half the week on the phone chasing up notes, speaking to fim libraries, cytology departments, pathology departments, there must be an easier way, we're not the first people in the world to want things sending off for second opinions. I just get frustrated with people's attitudes "oh it might get there, I'm not sure you'll just have to wait"

Oh well, whinge over, I'm going to get on and enjoy some time with the kids, can't make any more phone calls until Monday at 9am!

Thanks for listening again !

[Karen]

You are definately covering all the bases with opinions from great centers. Hang in there, and please let us know how the appointments go!

[Chris'Mom]

Jo, just read thru your posts, my heart and prayers are with you....hang in there and keep us informed, I am sure soon you will have a definite plan worked out.....take care..Mary Ellen