Has anyone else been where we are?

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georcass
New Member


Date Joined Apr 2010
Total Posts : 16
   Posted 7/9/2010 4:54 PM (GMT -6)   
Hi everyone - I am writing because I feel so blue and depressed.  We had 3 month follow up visit with doc yesterday.  Had many questions, but only got to talk to the PA.  My husband still has a UTI (since a couple weeks after cryo - 3/22).  Doc did a cystoscopy, and told husband it was from sloughing of dying cells.  He will be on macrobid for 3 months.  Also, PSA was 1.98.  PA said they were satisfied, but I am not.  Feel abandoned and alone.  My love having cancer is bad enough, but no support from medical staff is very bothersome.  thinking of going to an oncologist.  Any one have any thoughts about this? Sure would appreciate your input.
 
Georgeann
Age at dx - 77
November 17,2009 - PSA - 19
January 18, 2010 - Biopsy -
January 21, 2010 - Diagnosis PCa - Gleason - 3+4=7
February 1, 2010 - bone scan - arthritis shoulders, knees, neck.  "suspicious" spot on lower spine.  Possible result of a "botched" lumbar puncture in Sept. of 2007.
Feb 6, 2010 - CT scan of abdomen and pelvis - unremarkable
Feb 9, 2010 - met with surgeon and radiologist - determination - turmor stage 2b
March 22, 2010 - cryo surgery
June 23, 2010 - first psa after cryo - 1.980
 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 7/9/2010 5:08 PM (GMT -6)   
Oh yeah Georgeann. Been there, done that. My first uro's eyes glazed over when I tried to tell him what was going on. I finally yelled at him, he yelled back and I found another uro.

My primary care doc did the same thing when I tried to fill him in on some of my testosterone history. (It is in my record but he was too busy to read that.) He sent me a letter telling me to do some stuff that there's no way I'm ever gonna do. Now I'm looking for a new primary.

My point is that if they don't listen you MUST find someone who will. Don't be afraid to be stern with them. They work for you.

Jim
Age 75. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06. Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + .05 cc Trimix = Excellent Results
PSAs from 1/3/07 - 7/17/09 zero.
Next PSA - July/2010
Lung cancer dxed on 5/16/08. Surgery on 6/25/08 T1N1M0 - Stage IIA Finished 4 cycles of chemo on 11/7/08.
CT scans on 12/2/08 - 12/22/09 - in remission!!!
Next scan in June 2010.
Biker90's Journey
http://www.caringbridge.org/visit/jimrobinson
"Patience is essential, attitude is everything."


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 7/9/2010 5:16 PM (GMT -6)   
Hi Georgeann,
 
I am not sure what represents a good post operative PSA for cryo but I can empathize with you on the reaction of the medical staff. You may want to give things a little more time to develop as three months is not that long. I recently concluded a two year round of hormone therapy and the urologist said see you in a year. I have to admit I thought that was a bit of a long time since he had just given me news that my PSA was rising. Retest a month latere showed that not to be true. So, like yourself, I am looking for a medical oncologist who will help me to manage the disease. Oncologist are trained to treat cancer though most treat more than one type but it may be time for the switch. And, in your case, it does not do any harm to get a second opinion. Do some research and try to find a knowledgeable oncologist preferably with PCa as a focus in his/her practice.
 
You may want to discuss HT with doctor if the PSA starts to rise. It is a bit of a bother for the patient but one adjusts. I seem to recall that cryo can be repeated as well. Or am I in error with that?
 
I wish you and your husband well. You have found a site full of caring people who will offer advice and support.
Regards,
Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 7/9/2010 7:18 PM (GMT -6)   
Georgeann,
Does your husband feel the same way? If so it might be time to look elsewhere. If not perhaps you could talk to them before you look for another Dr. There are times I want in and out and other times I want info and more info. Be your own best friend and be assertive when you feel that you are not getting what you want. Best to you and your husband.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 7/9/2010 10:18 PM (GMT -6)   
Not sure what your situation is. Are you in or near a large city where you have multiple choices for medical help ? Is there a major cancer center nearby ?

I live two hours from Cleveland Clinic, where I went for my surgery. I might add that my Doctor, who is very well known and a very busy surgeon, has always seen me when I go back for follow-ups, and makes me feel like time is no issue.

But I also have a local uro, who is young and learning, but is very personal and attentive. He called me at home one evening to tell me my biopsy was bad.

My point is , that if you have multiple options in your locale, you should be able to find a doctor who treats you and your husband like you need to be treated. Don't be afraid to be insistent. Tell the PA that you expect to see the doctor as well. Tell the doctor that you expect to see him when you have an appointment. Talk plain with them. If they fail to give you a good feeling. look for another doctor. You are the one paying the bills.

Good luck on your recovery. Keep posting here and let us know how it is going.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


georcass
New Member


Date Joined Apr 2010
Total Posts : 16
   Posted 7/10/2010 12:41 AM (GMT -6)   
I have tried so hard to keep a positive attitude for my husband. I don't want to bring him down. He is a kind of a "head in the sand guy" and I am the opposite. I guess that is partly why I'm feeling so blue. I want to keep everything positive for him. I keep all of my worries to myself. I have found a medical oncologist in our area who specializes in uro cancers. I just hope we find the help we need. I know it may sound silly, buy I have had a bad feeling about this from the start. Has anyone else experienced this? I thank heaven for this forum. It is all the help I have had.

God bless all of you,
Georgeann
Age at dx - 77
November 17,2009 - PSA - 19
January 18, 2010 - Biopsy -
January 21, 2010 - Diagnosis PCa - Gleason - 3+4=7
February 1, 2010 - bone scan - arthritis shoulders, knees, neck.  "suspicious" spot on lower spine.  Possible result of a "botched" lumbar puncture in Sept. of 2007.
Feb 6, 2010 - CT scan of abdomen and pelvis - unremarkable
Feb 9, 2010 - met with surgeon and radiologist - determination - turmor stage 2b
March 22, 2010 - cryo surgery
June 23, 2010 - first psa after cryo - 1.980
 


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 7/10/2010 2:32 AM (GMT -6)   
Georgeann
I'm sorry you feel so let down by your current medical team, so I hope you will be able to find someone better.

It is very important to get the communication/information side of cancer right, and this is often very hard for the aptient as it is such an emotional business as well as a medical one.

I'm not sure I can offer much help as I have been looked after by the right kind of people. Also I live in Holland and can't offer much advice about howm to look for new docs in the USA.

My urosurgeon's main team consists of him, the surgeon, and two physician assistants. The surgeon is actually rather poor at communicating as he's a bit shy and tends to talk to us without looking at us, but this has been more than made up for by the two PAs who are masters at explaining things and answering questions, as were the urology department receptionists. I have never felt that if I see the PA I am getting second best.
For my RT I was also dealt with by three diffeent people, but all were excellent (it was the RT receptionists that let the side down.)

I always have a list of questions when I have an appointment but often find that most of my questions get answered by what they tell me first. And they have always wanted to know if there is anything bothering me. I am being treated by a specialist cancer institute so they know that it can be a mental strain and the sheet of useful phone numbers etc that I was given up-front included the in-house support team. (It also included stuff about their sexuality & cancer clinic)

It is absolutely normal to worry or be scared or feel completely lost when confronted by cancer. It is also absolutely normal to have good days and bads days, sleepless nights etc and feel really low . So don't add to things by also worrying about the fact that your are worrying, just do what you are doing which is asking who can help you sort things out better.

There are also lots of wives, daughters, partners here who will probably have much better things to say than me.

I hope that next week you find who/what you want/need.

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak
June 27th My 50th Birthday - feeling better but still not 100% okay


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 7/10/2010 10:43 AM (GMT -6)   
Georcass, if I'm reading your post correctly, your husband's PSA at diagnosis was around 19 and is now at 1.9 - that sounds pretty darn good to me but I don't know anything about cryo. When you and hubby made the decision to have this treatment, did the doctor(s) mention what the expected results would be - e.g., did they say they wanted to see a 50% drop in PSA or a complete obliteration of PSA (such as after surgery)?

As for the UTI, it's possible that the cyro created a bad infection. It happens after surgery as well.

I would ask to speak with the doctor - not the PA or a nurse - and get his take on the situation. If he or she poo-poos you and doesn't answer your questions to your satisfaction, get a copy of your husband's file and find another urologist. There's no shortage of them.

What you are feeling is perfectly normal. Two and a half years after surgery, I still worry whenever my John tells me something hurts or he wants to talk to the doctor about something. Cancer changes your life.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


In This Together Wife
Regular Member


Date Joined Dec 2009
Total Posts : 135
   Posted 7/10/2010 11:48 AM (GMT -6)   
Glad you found someone who specializes in uro cancer. It is a must that you find a medical team you can work with and who will work with you. I am sure that your concern and effort to stay positive are more of a help to your hubby than you know (or he tells you). Do what you need to keep yourself strong. Listen to your gut but know that feelings flucuate a lot. Please keep us posted and glad you found this site.
CareBear
(Bear's stats) Age 49
 8-4-09    Family Practioner for back pain  PSA 4.9
8-20-09  Consult with urologist                PSA 4.89
9-2-09    Biopsy          3 cores positive 7% 3+3 (6) gleason
11-13-09 DaVinci
11-23-09 Cath removed  Path report cancer contained neg. margins
 2-22-10  PSA 0.01 !!!


georcass
New Member


Date Joined Apr 2010
Total Posts : 16
   Posted 7/10/2010 7:23 PM (GMT -6)   
Thanks to everyone for all of the encouragement and good advice. Sephie, the doc had said his PSA should be less than 1. He also said the UTI is from not emptying bladder completely due to sloughing off of dead cells. Alfred, I have the names of some local oncologists and if my husband approves, I will call this coming week. To Goodlife, we live 90 minutes from Cleveland Clinic, but insurance prevents us from going out of network. we have been seeing doc who is at Allegheny General. Considering going to Hillman. CareBear, Michael, Don, and Jim thank all of you for your warm thought and words of encouragement. After reading all of your posts, I feel a lot better. I know that at least I'm not alone.

God Bless You All,
Georgeann
Age at dx - 77
November 17,2009 - PSA - 19
January 18, 2010 - Biopsy -
January 21, 2010 - Diagnosis PCa - Gleason - 3+4=7
February 1, 2010 - bone scan - arthritis shoulders, knees, neck.  "suspicious" spot on lower spine.  Possible result of a "botched" lumbar puncture in Sept. of 2007.
Feb 6, 2010 - CT scan of abdomen and pelvis - unremarkable
Feb 9, 2010 - met with surgeon and radiologist - determination - turmor stage 2b
March 22, 2010 - cryo surgery
June 23, 2010 - first psa after cryo - 1.980
 


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 7/11/2010 5:57 AM (GMT -6)   
Georcass, thanks for clarifying my PSA question. I do hope that you find answers - and a game plan - soon. It sucks when insurance restricts who and where you can go for medical care. Perhaps a call to your insurance company might help as they might approve a second opinion/consultation out of network...just a suggestion.

Hope you stay with us and let us know how things are going for you and your beloved - I know this is very hard for you but we're all here to get you through this.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


keepingon
Regular Member


Date Joined Mar 2008
Total Posts : 30
   Posted 7/12/2010 2:28 AM (GMT -6)   
It won't hurt to see one, another set of eyes could help.
Found out Jan. 07
g\8
psa 116
The doc said chemo or radiation was not an option.
Started Lupron to shrink it before surgery, did not work.
Radical prostentechomy Sept. 5.
Couldn't get it all, it was outside the sack and into lower lymph nodes.
Cathader removed about 3 months.
Incontinont for about 3 months
Peranial rectal absesses w/ drains for about 4 months
Continued Lupron until Oct. 08 .
Started losing weight. <194 to 170>
Now trying Zoladex, next shot in Dec. 18, then we will see what the PSA is, before deciding on future treatments.
Now in the T4 N1 stage.
Side effects:
Lupron=memory, tired all the time, joints and muscle aches, hot flashes.
Zoladex=memory, tired after doing something, left back rib cage is tender when inhaling, all joints and muscles below the waist ache, the worst is the right hip.
Went to the doc's today 12-18-08, stopped Zoladex today waitin on blood work to come back.
Blood work came back .07. now back on Zoladex for three months then we will see what happens.
PSA came back .08, back , see what happens in three more months.
Zoladex quit working., Now back on Lupron.
Had a  tumer removed from back right hip.
Psa still rising.3-2-10
Still on Lupron.
The last doctors visit, he said He was suprised to see how well I'am doin. He also told me he had second  thoughts of doin the surgery, because he thought I was too far gone, But I will show em.
5-5-10 PSA has doubled in the last year from .01 to .1
weight now 163#
Now having trouble with my right femar and knee  we think it might be a side effect from Lupron
Had a bone scan, it came back good. Dark spot on my left side of my skull wich has gotten smaller since my last bone scan
PSA stayed the same .1  6-14-2010

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