HIPEC...didn't work....
LivinginNH
Member Posts: 1,456 Member
Rick's initial scan results yesterday showed all clear, until about an hour ago when the doctor called. I guess the HIPEC surgery didn't work...the little bastards are back on the peritoneum. Onc. asked us what we'd like to do, chemo now or wait until symptoms appear. Anyone with any suggestions?? We don't know what to do - we're not doctors! I feel like I just got kicked in the stomach after yesterday's good news. I feel numb. :-(
--Cynthia
--Cynthia
0
Comments
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Oh, Cynthia
If the doctor asks if you want to wait till symptoms appear - we'll if he sees them on his peritoneium, isn't that a symptom? I mean he sees them while does he want to wait.
Does he feel like chemo is the best option first?
Can he surgically remove or use RFA as a treatment option?
I wish I had a firm answer, but it might be good to sit back down with the onc again, after this shock has worn off and go over the options again.
Sometimes, we need the doctors to influence us as to what's the best decision...it's a big decision for us at the time.
It might be that that he wants to do chemo to shrink or eliminate some of them for some type of procedure.
I hate this news and wish I could have been more help....saddens me to hear this about Rick and for you as well. You're fine people. If I think of anything, I'll pass it on and look forward to hearing something else about this latest news.
-Craig0 -
D@mn
D@mn it!! I'd be heading for the chemo, if the little suckers are there, why wait for them to grow? I'm surprised your onc even asked that question.
I'm so sorry Cynthia, it'll be okay though, just get started on the chemo. That's what I would be doing at least.
Love at you both.
Winter Marie0 -
Cynthia:
First let me say I'm so sorry. We, along with others on the board, have experienced the kicked in the stomach feeling. It feels overwhelming. It is so very difficult and as a caregiver you feel so very helpless.
So oncologist says wait for symptoms, well, mets seems to be a symptom to me. Anyway, can the surgeon who did the HIPEC give you any guidance, recommendations or referral to a doc experienced in this area. Give him a call and get his take on it.
What effect or outcome does your doc feel chemo will have on the peritoneal mets? If he says I don't know he my just be being honest.
You are right, the docs are the experts and they should lay out a treatment plan not ask what do you want to do now. If your doc is not sure seek out a second opinion on how to attack this.
I'm so sorry.
Hugs - Tina0 -
i dontherdizziness said:D@mn
D@mn it!! I'd be heading for the chemo, if the little suckers are there, why wait for them to grow? I'm surprised your onc even asked that question.
I'm so sorry Cynthia, it'll be okay though, just get started on the chemo. That's what I would be doing at least.
Love at you both.
Winter Marie
know your situation but i recently had a chemo onc ask me what do i want to do as far as treatment goes and i told him i am not a doctor and right now i will do what my surgen needs me to do.i truly believe you have to have a doctor you fully trust and are willing to put your life in that doctors hands.me and my surgen discussed it and he apologized for even sending me to that chemo onc.we are currently on the right track now.good luck to you and your husband..Godbless...johnnybegood0 -
Confused
I am short on experience with the HIPEC and issues with the peritoneum so forgive me if I ask some stupid questions.
How can the scan be clear and there still be evidence visible in the peritoneum?
What symptoms does the Onc think will appear if you wait?
I can understand that you don't know which way to turn. It doesn't seem like you are getting enough good information to make an informed decision.
My suggestion is if you can get another opinion regarding clear or not and if not clear what the options truely are.
I think you need more information.
Marie who loves kitties0 -
Hi dar Cynthia, it's a cruel way to have such a new!Lovekitties said:Confused
I am short on experience with the HIPEC and issues with the peritoneum so forgive me if I ask some stupid questions.
How can the scan be clear and there still be evidence visible in the peritoneum?
What symptoms does the Onc think will appear if you wait?
I can understand that you don't know which way to turn. It doesn't seem like you are getting enough good information to make an informed decision.
My suggestion is if you can get another opinion regarding clear or not and if not clear what the options truely are.
I think you need more information.
Marie who loves kitties
I don't know what suggest , maybe to continue with chemo? Don't know the meaning of " until symptoms appear ".
If chemo worked just push a little more don you think?
I pray for you both!0 -
Oh .... Cynthia
I am so sorry. I know how you guys fought to get the HIPEC done. I sure wish you had gotten better results. Take some time and let your heads clear a little bit before making any decisions. Make sure to talk with the onc about anything that comes to mind while you're pondering which direction to go next. My best wishes and prayers to you and Rick. HUGS0 -
Find a new Oncologist
Find a new Oncologist.
My team of Doctors talk to me. When a judgment call comes up, I talk to 3 different Doctors and then me and the Oncologist talk again and devise a game plan. The judgement call is not about the Chemo Treatments, it was about my health to continue the chemo treatments. Complications from an infection from the original surgery had taken it's tole on me when the Chemo started.
My doctors never ask me what I think, since this is not my field of expertise. They ask me about how I feel and if I feel strong enough to continue. This is when I have input.
My thoughts and prayers are with you to find a positive outcome for you!
Best Always, mike0 -
Cynthia............Lori-S said:Oh .... Cynthia
I am so sorry. I know how you guys fought to get the HIPEC done. I sure wish you had gotten better results. Take some time and let your heads clear a little bit before making any decisions. Make sure to talk with the onc about anything that comes to mind while you're pondering which direction to go next. My best wishes and prayers to you and Rick. HUGS
Try and find as many CSN people that are traveling the same road as Rick .....
Then find as many on here that have done the HIPEC......get their stories..where they went, what they did post HIPEC and pre HIPEC, their outcomes, and their decisions afterwards, and post all of those side by side...
Gonna be a little work but in doing this look for the best common denominators for Rick to head towards...
It is a shame when a person that studies all of this decides to get the monkey off their back by asking someone who most often hasn't a clue, what they want to do....makes me wanna ask them for a damn refund......
Sorry, just aggravating to think about what Onc said to you...anyway, find people and find that common denominator, then make a best educated decision....
What about a warm chemo bath around the area, is that a possibility ? If they are microscopic and show up on a scan then the little terds to me are vulnerable. I think I would bombard them with 1 or 2 treatments and see what it does as far as ridation.....Love to you and Rick and please keep the chin up, somethings out there...Buzz0 -
Time to regroup
Cynthia... I'm so sorry you and Rick have been given this latest blow. It's not what you need or want to hear. And right now, no matter how you look at it, you both will feel like the wind has been knocked out of your sails... because it has. But this too shall pass. Do not make any rash decisions while you are feeling like you've been sideswiped.
You ask for suggestions? Ok, I'm no expert, so take these how you wish... these are only my opinion, and based on not knowing Rick's history, so they may have to change depending on his condition/situation.
1) Get a new Oncologist. Stat. The oncologist is the head of your team. He/she guides you through this rocky journey we are on and puts together a team of experts/surgeons/radiologists and any specialist you may need on your team. It is up to the oncologist to pay close attention to what is going on with his/her patients and come up with an individual plan for each of them. Sometimes, there may be a possibility of more than one plan... in which case, it is up to him/her to sit down with you and go over all potential plans, giving you the pros/cons of each of them. At the end of that, he/she then would suggest which plan he/she thinks is best for you and why. Of course, as a patient, you could turn down all of them... that is your right... but that is the job or your oncologist... to be your head engineer/guide. He/she should never ever say, "Ooops, Houston we have run into a problem.... so what do you want to do about it?" BAD BAD BAD ethical manner and I would say adios to that Onc and get the hell out of Dodge.
2) I do not know anything about the HIPEC procedure, since the liver has not been a problem for me. But am I right in assuming it was a surgical procedure and as such, Rick is now in recovery mode from the surgery? If so, then that is something else to ask... if one were to start up a round of chemo, shouldn't there be a time period of recovery from surgery before he does that?
3) With the new onc, let him/her know that it's as if you are starting over from the very beginning. You want the onc to explain in detail and laymen's terms exactly what he sees from the scans/MRIs/images/tests/etc. and what does that mean to Rick and potential treatment. You want to know all possible plans... the benefits and the cons of each. After he/she explains everything, the final question should be... "If you had this exact same condition as Rick and have heard these potential treatment plans, which one would you choose and why?"
Before you and Rick make ANY decisions on treatment or surgeries or the "wait and see" approach, what you need to do is find an oncologist who you feel so comfortable with, you know that he/she has Rick's best interests at heart. One that you feel you can call or email anytime you have a question and know that they will get back to you. Once you know you have someone who is 100% on your side, your worries will melt away because you will be able to work with him/her as a team and know that you are doing the right thing.
Cheryl0 -
Cynthia
Oh Cynthia I am so sorry you got this hard news. I wish I could give you a hug or at least share a cup of tea with you and give you my support. I don't have an answer. I can tell you that you and Rick will be in my prayers as you decide what to do.
Aloha,
Kathleen0 -
Well - This sucks. I'm
Well - This sucks. I'm really sorry. Sometimes HIPEC works for good, sometimes not. I hate this for you.
I know what it feels like to get that call. To suddenly realize that you had a massive operation that did not achieve the main goal. To wonder if all that energy, effort, time, pain, money were all for nothing. It wasn't for nothing. If the ride I'm on is a ride to the "end" then I want to be able to look back and say - to myself, to my family, to you guys - I did everything I could to beat this, and I lived as well as I could while I did it.
Now - no more about ends. **** that. What are you going to do right now?
I'm thinking that your onc has gone over what chemo options you have. If not then you should talk more with him. Sometimes the path is clear and there isn't much of a decision. But sometimes WE have to decide, just like you and Rick decided to do HIPEC. The path for Rick right now is not very clear. Your onc needs to help you understand the options, but ultimately it is your decision. That's the way I see it.
Peritoneal mets don't show up on scans very well, and they don't respond well to chemo - that's why we did HIPEC in the first place. You have to take the drugs directly to the bastards. But peritoneal mets typically grow fairly slowly. That's my understanding. Ask your onc if that's true. That may be why he's offering the option of waiting. You could go for a long time, without the toxic side effects of chemo, before you are symptomatic. Maybe Rick could get really strong again and really healthy, and have HIPEC again. I don't know if that is an option. (It's out of the question for me since I have liver and lung mets as well.)
I have more to say, but I have to take off to my kids' performance at school. Maybe for today you just want to breath in and then breath out. And if you can do that all day long, then maybe that's a successful day. You've got time. Get focussed. I'll talk to you later.
Roger0 -
Thank you everyone... I'm
Thank you everyone... I'm still trying to catch my breath from this news, so I'm having a hard time focusing today. We've read all of your posts at least three times, and printed them out for future reference. Rick called at least fours of his previous doctors/surgeons/oncologists to ask their advice too. His current oncologist told him that he could wait until real symptoms appear (bloating/pain,etc.)to do chemo, but our thought was that it might be too late by then. But if the overall consensus is that he should wait, then we plan to take a 2-3 week trip to the Caribbean. He deserves to get away from all of this for while. We truly appreciate all of your suggestions and guidance, thank you all. I'll post an update when we decide what our next course of action will be. Love to all, Cynthia0 -
Rick's Latest Report
Cynthia,
So sorry to hear about the resurgence of the cancer. I had not read anything on the discussion board prior to sending you an email yesterday...so today has been a shocker for me. Obviously, I have a lot of HOPE invested in this HIPEC, because it continues to be such a wicked recovery for me. Had Rick already started a chemo regimen? Your note sounded like he was not yet on any chemo but I thought he had started a course of chemo after month 2 of his recovery.
The best to you both and I sure don't know what the right decision is but if it were me, I'd try and fit that Carribean trip in!0
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