Well...we went to Peter Mac for a routine appt today - monitering appt. All I heard was 'No plan B', 'fingers xed' 'inoperable' and all our money is on the nose with the treatment he has had'.
Can someone tell me what we heard, & why we weren't told these quotes before treatment began? Saw 2 doctors, he other said the lymph node glands should have been gone after 4 weeks, which is today.
Rod said to me coming home, 'why did you cry at the doctors?' I said 'I didn't cry, I was just waiting on his answer as to when the PET scan would be'...bullshit, bullshit.....GOD????
Can someome please tell me what is 'inoperable?
Can someone please tell me what 'fingers crossed means?'
Can someone please tell me what 'No plan B' means
Can someone please tell me what 'all our money for a win on the nose; meand when they aren't relating to the first soft nose past the post in horse racing'??????????????????????????????????????
only edited a spelling error
Jeanna you need to calm down!!!!! Deep breath and count to one hundred.
I think you are a bright intelligent woman and you know exactly what they mean,it just isn't what you want to hear.Thats not going to change anything Jeanna and you have to get yourself together and digest this information and decide what you are going to do next.You an accept what they have said and get on with things and hope they are right,or you can get a second opinion and check that what they have told you is correct.Either way they are betting on the nose they got it right so thats good,but if you think you need to explore further options like surgery then thats ok too.Screaming and yelling is ok too but not for long .
Liz, It took me more than 12mths, less than 18mths to read email...you obviously know what I mean. Guess my under lying question is why they didn't say all these things at the beginning?, not just '50/50.....I wanted to cry all the way home...couldn't, didn't....nearly..all the way. Surgery is not an option...according to what they said today.
Think I've been smacked in the mouth by the ball...
Thats why i tell everyone to keep their eye on it !!!
Right so surgery isn't an option.who said so ?one doctor,two ,three if david had his way everyone here would get at least four or five opinions before accepting somthing they are told,so why not go for at least one more?its your right and you just never know,another docotr may have more expertise or at least know someone who has.Maybe the doctors he is under really are happy that they have acheived a good result with the treatment they have done so far, but until he has follow up scans thats going to be hard to determine.
Whatever they said at the beginning doesn't really matter a damn Jeanna they told rob he had a 90% chance of a ten year survival its just crap when you turn out to be the other ten percent,but did they tell you that surgery wasn't an option?did you know that all along or did they say he would have surgery at some point?Its all a lottery hun and who knows where the dice will fall.
Any way lets not be gloomy lets focus on the news that they think they have done ok and tomorrow when you have slept on it think about another opinion.Two heads are better than one.
Wear contacts.....glasses are acratched...hey Cookey, what are you're thoughts on a second opinion post Tx?
Oh goodness, I've just read youre entire post...silly Jeanna... yes, we'll go there....& yep, after the scans in Nov...so far they only have said surgery is an option in the lymph node....but thanks, will wait until post scans, & go for a 2nd opinion if & when needed.....thanks for listening...love ya...xx
Not giving up.
Jenna: I would get the second opinion NOW when another doctor, or hopefully another cancer team has the advantage of early assessment and hopefully treatment. Why are you waiting???
Donna
Should I call his RO & tell him how I feel & that we ae looking at a 2nd opinion?
Yes...yes...yes....get another opinion.
Jeana,
Help me,
Are you saying that he still has 1 or maybe 2 nodes that are still there?
Has anyone taken a needle biopsy to determine if it's still cancerous?
The nodes can be taken post Tx as he can have a bilateral neck dissection.
The reason that they are saying no more radiation and fingers crossed is perhaps old school as more than a few on this site have said they have had the rad twice and one person just said he had it 3 times and is still among us.
I got multiple opinions so don't be afraid to seek others and don't wait to long to decide but you first need to know if the cancer is still there.
His next scans will be in 2 months. The doctor 2 weeks ago mentioned the lymph nodes cut out. Thats fine. It is the tumour in his mouth [tonsil, jaw, under tongue, soft palate] that we were told was inoperable. At the begining, they said they wouldn't operate because they weren't confident they could get all of the tumour. I stupidly thought they would shrink it with the chemo & rads then reassess it. Being told it is inoperable puts a whole new picture in our heads. Being told 'no plan B' makes it worse. David we were told the lymph nodes held cancerous cells but the tumour was inside his mouth.
I serously need to speak with someone, I think it's doing my head in more than Rod's...Im so sad
PS...no they haven't done any more biopsys yet. Waiting for Rod to go to sleep before calling the hospital. I feel like a mushroom.....
I know how you feel, Jeanna. My husband kept getting bad news after bad news also. Do you have family or friends to talk to? maybe someone where your partner is being treated can suggest a support group for you. It is a lonely time as I'm sure you don't want to voice all your fellings to him. Let me know if i can help-you can send me a pm and I will give you my number.
Sue
Jeana,
Still confused...he finished Tx end of July 09 and you are saying that he stills has swollen nodes AND the tumor in his jaw and soft palate?
Yes David, the nodes are still swollen, more specifically the larger one. It HAS come down [in height] but the dimentions are they same. The tumour - well, they have seen something, but covered it over by saying it could be 'debris'. I called & spoke with the registrar we saw the other day [not Rod's oncoligist], the registrar said that after the scans they will make decisions on what they could do next. He said if the nodes don't grow any bigger, they won't do a biopsy. I just told him how we felt when leaving the hospital on Tuesday, and that there didn't seem much hope. 'Bloody awful feeling'. I felt a little better after speaking with him, guess there is no point thinking about it until it happens, but that is damn hard. He said their objective with the treatment was to 'cure' him, suppose that's the same for everyone.
Suemarie, thankyou for the offer of an ear...could be taking you up on that in the future!! Saw my councellor at work today, cried for 40mins non stop I reckon....going to bed now...
J
xxx
Hang in there Jeanna. Their objective was to "cure him" so fingers crossed that's what they are still planning. Steve's doctor's never said that to us. They said chance of "cure" is minimal and they hope with treatment to prolong his life. This was 2 different doctor's in different states as well. But hang in there because these are statistics. One doctor said to us he's seen many people do the complete opposite of what they expect. Stay postive girl, you and Rod will get through this.
Jeanna,
It's not totally unusual for nodes to still be swollen but IMO they need to be checked out BEFORE the increase in size. Still unsure what they are saying about the primary tumor but your last post isn't as alarming as your others but I would still press your head cancer person for some clear answers and I wouldn't wait for their schedule.
Jeanna,
When my daughter was diagnosed with her second occurance and all the reading I did the first words I asked the RO was are the plans to work for a "cure" and their answer was yes. So that is encouraging and you should hold onto that. I am praying for you and Rod you will get through this.
God bless,
Bonnie
Thanks guys, appreciate your hope & support...will keep you informed, but hopefully not too much complaining for a litle while!
Hey Wenz...Tiges are on...GO TIGES...lol!!
David, do you have 'Buckleys and none' chances in the States? Well, Rod's footy team tonight is playing, and their changes of winning are 'Buckleys and none'...lol!!
OK what is "Buckleys and none" and I assume a "footy" team is your football which is either our soccer or rugby? And Tiges are a name for what team? I'm confused.
She's confused you with Aussie slang. Buckleys and none means no chance. Footy is definetly football but she's talking rugby league. Tiges is for Tigers which is one of the many footy teams. Hope this helps.
Wendy...I am apalled....Tigers - Richmond - alike to Sydney Swans...I'm a Mexican...Aussie Rules girlfriend!! [actually I came here from New Zealand in 1986 - rugby union - hate rugby league, am now an Aussie, hate winter sport full stop but don't tell anyone]....oops...David, yes, sorry, 'buckleys or none' is no chance of winning Tiges is AUSSIE RULES football - Wendy!! They will be in the top eight next year for sure....all losing teams do something better the next year don't they??? US football is gridiron - no? yes? Should be on cable tv.....
Hi Jeanna, it has been awhile since you posted so you may have already got a second opinion. One suggestion I had was to see if you could talk to your husbands Dr without your husband around. In my situation I have always been too afraid to come out and be blunt with my questions when my wife is around. After her main operation and neck dissection, we had to go to a training on taking care of her trache. Dummy me, kept asking questions about the care of it until my wife finally broke down crying. Since then I have always tried to tread lightly but from reading your posts, it sounds like you have the same questions everyone has in that position. Hope you have been able to get answers to your questions and your husband is doing well.