MPE with SRCC

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This topic contains 5 replies, has 3 voices, and was last updated by  handyandy 4 months ago.

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July 16, 2017 at 11:23 pm  #1291100    

laura234

Is it typical for an oncologist to withhold information until they have the whole picture? What is the typical prognosis for SRCC pancreatic cancer with MPE?

I’m an RN but do not have much experience and haven’t worked in 8 years. My father is 72 years old with a history of stage 4 bladder cancer (5 years ago) and stage 2 colon (adenocarcinoma). He recently presented with MPE with SRCC. They have ruled out stomach as the primary. He had a negative PET scan (a couple of small lung nodules and one pleural nodule with Max SUV of 2.5). Although I understand they are still trying to identify the primary, I’m confused as to why the oncologist has not explained things more to my father. This is placing a huge emotional burden on me. He thinks he is getting better because he is draining less and less fluid from his chest at home. He sends me all of his labs, reports, etc. and asks what I think. I live on the opposite coast from him. Anyway, it is very hard to realize that his prognosis is most likely very poor and yet I’m the only one in my family who knows. I don’t feel it would be right for me to tell him anything (I’m not an oncologist) and yet he needs to make some decisions. He lives alone far away from family. They are running further tests on the fluid to see if they can identify the primary though histology. I think. I’m trying to be patient but it’s frustrating that the oncologist hasn’t at least explained to him what he knows so far. Thank you for your time.

  • This topic was modified 4 months ago by  laura234.
  • This topic was modified 4 months ago by  laura234.
July 17, 2017 at 4:34 am  #1291102    
JimC Forum Moderator
JimC Forum Moderator

Hi Laura,

Welcome to GRACE. I’m sorry to hear of your father’s diagnosis, and I understand the stress you feel at this time of uncertainty.

I don’t feel that your father’s oncologist is withholding information but rather is waiting to obtain enough information to properly counsel him. The specific prognosis varies depending on the site of origin of the cancer, and even within a given type of cancer, histology and mutational status can make a significant difference.

Once more information is available, your father’s oncologist will be able to have an informed discussion with your father about treatment strategies and prognosis, although a good oncologist will stress that median survival times for a given cancer (if pressed to provide such information) are statistics that describe the experience of a large number of patients and do not necessarily predict how an individual patient will fare.

Unfortunately the diagnostic process can take some time, especially when the origin of the cancer is somewhat difficult to determine.

Good luck in getting some answers and setting up a treatment plan. Most patients and caregivers feel that having that in place relieves some of the uncertainty and anxiety.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

July 17, 2017 at 6:13 am  #1291103    

laura234

Thank you for your response. I am so appreciative of this website and I apologize for posting a question at 3am out of worry and frustration. I realize I am not being patient. It’s just tough to hear him say he is getting better or ask my opinion about lab reports, scans, etc. When my Mom was alive everyone looked to me for medical advice and interpretation of her labs, etc. I feel partly responsible for her death because I didn’t realize they had changed her medication and she passed away from a lung infection related to immunosuppression. (she had severe RA) Of course it’s not my fault if I didn’t know but I was busy with three small children and I think they may have mentioned her new med and I didn’t notice.

ANYWAY, thank you so much for your response and hopefully we will know more next week. Compounding my frustration was the fact that insurance did not initially approve the additional lab testing and so when my dad went in to discuss the results they told him they had not run the test yet and come back in two weeks. (why he couldn’t have been given this information over the phone? I think just to get the visit payment) I’m fearful that the oncologist will avoid giving my dad clear information about his prognosis but rather just tell my Dad they are changing his chemo and leave it at that. I suppose he will at least stage the cancer. Which would then leave it up to me to tell him what that means. I hope that is not the case.

I hope to contribute more to this site as we get through this. Thank you again for your time.

July 17, 2017 at 6:49 am  #1291104    

handyandy

hi Laura,

I hope that you can forgive me for adding to this conversation. I occasionally come to this site as it has such a wealth of information. Like you, I suffered the loss of my mother and I’m trying my best to make sure my father gets looked after. We too look back and think we could have done things differently. One thing with my father, is that he has not received a diagnosis yet but has been under the weather for a long time. He signed up with a new doc and went for a PET scan (with CT). He was not given the all clear but told that there was some FDG Uptake in a node. Now I am sure that the number given was MAX SUV 1.9. Seeing your post and that the scan was classed as negative with uptake of 2.5 made me wonder if the report my dad received is less worrying than we anticipated. He was also noted to have a mildly enlarged lymph node in the chest (mediastinum?) of 9mmx8mm. Looking around, this does not seem too concerning but maybe with some uptake it painted an ominous picture?

Was your father’s MAX SUV 2.5 and how was the “negative” PET communicated to you. We didn’t find any clear indication in the report of positive or negative and it has been suggested we go for a CT scan in 6 months.

Apologies again for adding to your post, but the circumstances seemed so similar. I hope your father gets to the bottom of his diagnosis and receives treatment that he responds too.

Wish you well,

AH

July 17, 2017 at 7:44 am  #1291105    

laura234

No apologies needed! I am happy to be able to contribute something even though my knowledge is limited. It’s my understanding that an SUV of 3.0 or higher would be considered positive. I have more information to give but I have small children who are clamoring to be fed. LOL also my phone is acting up so I will get on the computer later to type out a better response :-) so sorry that you have to suffer through this anxious waiting about your father’s diagnosis.

July 17, 2017 at 7:49 am  #1291106    

handyandy

thank you Laura, hope the kids enjoy feeding time. My father’s case is an enigma. We have a 8mmx9mm lymph node with MAX SUV of 1.9, which some sites quote as normal on both item (SUV and size) yet there is something niggling the doctors which niggles us. It just seems so confusing trying to understand if there should be a concern or not.

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