In shock UPSC IIIC diagnosis (Incomplete Staging) Update

beccabtown

One or more of my scans since

One or more of my scans since surgery showed a small amount of ascites in the abdomen, but my doctors haven't even commented on it, and it does not seem to be anything they would try to treat in itself.

When I asked my surgeon about some pain around the incision that concerned me, she said that was normal healing. My sense is that in general the symptoms that are reason for concern during healing after surgery are fever, redness, or discharge from the incision. That said, given your mother's age, you should certainly seek advice about anything that is worrying her.

rcdeman

EZLiving66 said:

I'm sorry I don't have any

I'm sorry I don't have any advice, Rebecca.  I felt fine after my hysterectomy from the day I danced out of the hospital.  That was, by far, the easiest part of this cancer journey.  It sounds like your mother's doctor is giving her options.  When you talk to her doctor, I would ask the reasoning behind each one so you can make an informed decision.  

Love,

Eldri

Thank you for the advice,

Thank you for the advice, Eldri. I have asked the doctors about this, but in the end, all the decisions are still ours to make. It's that part that is confusing.

Thanks again. Just wanted to mention that you are such a blessing here in the CSN forums.

Love,
Rebecca

rcdeman

MAbound said:

Not sure

I'm not sure I can offer any advice at this point for you because I've never even heard of hypermetabolic fluid until now. I'm hoping you have confidence in your mom's doctor's reccommendations because they probably have the best idea of what they need to do to pin down what's going on with your mom so that they can say what the best course of action is. It could be that getting the chemo/and or radiation started would resolve a lot of what's going on. 

As far as her post-op aches and pains goes, some of that may be from the inevitible adhesions forming inside from the surgery as well as the fluid that showed up on the CT. Take a breath and don't visualize it as being something scarrier than that....it's tempting to do, but not going to help either of you to think like that while the doctors are trying to get a handle on thiings. One step at a time. 

Kudos to both you and your mom for how you are hanging in there and doing what needs to be done! It's a lot to cope with, but remember some of it is behind her already with the surgery she's had so far. One step at a time and you'll both get through this. 

 

Thanks for your reply! I do

Thanks for your reply! I do take each of the doctor's recommendations seriously and for the most part, we usually defer to his choices. However, after hearing so many horror stories about external pelvic radiation and various other treatments and the long-term side effects, it's definitely something we have to reconsider and stew upon before running headfirst into the treatment process.

I've read some posts concerning people with similar aches and pains my mom is going through and many have ended up in a terrible situation. I want to be prepared but at the same time, I think I'm scaring myself more than I ought.

But you are definitely right about just taking this one step at a time. Right now, I'll just write down these questions and concerns I have and address them to the gyn/onc surgeon tomorrow. Let's hope this fluid isn't anything serious. (I'm mainly concerned because she had a fluid leak scare a week or two back. That, and her peritoneal washings came out positive) Will keep you guys all updated!

Thank you so much for the support! You guys are awesome!
Rebecca

rcdeman

beccabtown said:

One or more of my scans since

One or more of my scans since surgery showed a small amount of ascites in the abdomen, but my doctors haven't even commented on it, and it does not seem to be anything they would try to treat in itself.

When I asked my surgeon about some pain around the incision that concerned me, she said that was normal healing. My sense is that in general the symptoms that are reason for concern during healing after surgery are fever, redness, or discharge from the incision. That said, given your mother's age, you should certainly seek advice about anything that is worrying her.

Let's hope that this

Let's hope that this hypermetabolic fluid issue is something as harmless as yours. It's the combination of various symptoms she's experienced over the weeks that have got me anxious-- that one weekend where she leaked a bunch of fluid for 4 hours straight (might be part of the fluid in her pelvis now!), her various back, buttocks, and groin pains, as well as the pelvic pressure and feeling of heaviness and fullness. All these symptoms combined just doesn't sit well with me. I will definitely address these to the gyn/onc tomorrow during our checkup. Let's hope he takes our concerns seriously and doesn't disregard them.

Thanks for your advice, Becca!
Rebecca

rcdeman

UPDATE 09/28/16

Hi all,

So my mom's medical oncologist called me today to give me an update on the PET/CT scans that were taken on Monday. He said there didn't seem to be any visible tumors in the pelvic region, but he did say there was some hypermetabolic fluid located in the pelvis that had higher than normal activity. He said this could either be caused by 1) after-effects of surgery, 2) infection, or 3) cancer could be causing it.

Has anyone here experienced these fluid build-ups after hysterectomy? My mom is currently 5 weeks past her hysterectomy, and she still has heaviness and slight pain in her lower pelvic region. She told me it feels like fluid is pressing down on her lower abdomen, and this was even before the PET/CT scan results.

She also has other various aches and pains that make me worried, such as spontaneous groin pain. She also said she feels a lump when she presses down on it. When she presses down, there is pain. She also has a sour unpleasant feeling in her buttocks that she never had before until now as well as intermittent back pain/fatigue when she walks around. As I am encouraging her to stay as active as possible, the back problem concerns me as it may eventually interfere with her motivation to walk.

I'm worried that the hypermetabolic fluid is caused by reason #3.  Right now, we are deciding whether she should go back for a second surgery to remove her para-aortic lymph nodes/omentum or whether to go directly to a sandwich treatment (chemo-->radiation-->chemo) or just 6 rounds of carbo/taxol (we have the option to decide). We will be meeting with her gyn/onc surgeon on Friday for checkup and further discussion of the results of her PET/CT scans.

What are all your thoughts? I would love to hear anyone's experiences or knowledge in this area. Thanks to those who emailed or messaged me about their stories and reasons they did or didn't go through with external pelvic radiation! It has helped, but we are still so confused.

Love,
Rebecca

Kvdyson

rcdeman said:

Thanks for your reply! I do

Thanks for your reply! I do take each of the doctor's recommendations seriously and for the most part, we usually defer to his choices. However, after hearing so many horror stories about external pelvic radiation and various other treatments and the long-term side effects, it's definitely something we have to reconsider and stew upon before running headfirst into the treatment process.

I've read some posts concerning people with similar aches and pains my mom is going through and many have ended up in a terrible situation. I want to be prepared but at the same time, I think I'm scaring myself more than I ought.

But you are definitely right about just taking this one step at a time. Right now, I'll just write down these questions and concerns I have and address them to the gyn/onc surgeon tomorrow. Let's hope this fluid isn't anything serious. (I'm mainly concerned because she had a fluid leak scare a week or two back. That, and her peritoneal washings came out positive) Will keep you guys all updated!

Thank you so much for the support! You guys are awesome!
Rebecca

No regrets

Rebecca, I just wanted to share with you that I had 28 external pelvic radiation therapies (in addition to chemo) and it was not bad for me at all. I had barely any immediate side effects and have had zero long-term side effects (so far, knock on wood). I'm not telling you that to change your mind about anything - just to make sure that you heard from others who've chosen that route and have had no regrets. Good luck to you and your Mom no matter what you decide. Kim

rcdeman

Kvdyson said:

No regrets

Rebecca, I just wanted to share with you that I had 28 external pelvic radiation therapies (in addition to chemo) and it was not bad for me at all. I had barely any immediate side effects and have had zero long-term side effects (so far, knock on wood). I'm not telling you that to change your mind about anything - just to make sure that you heard from others who've chosen that route and have had no regrets. Good luck to you and your Mom no matter what you decide. Kim

Wow, thanks for letting me

Wow, thanks for letting me know... it goes to show that everyone's response and reaction to the various treatments varies immensely. If we do decide to do external pelvic radiation, we can only pray she responds similarly to you. Did you do anything in particular (a routine, a change in diet, medication, supplements?) during this period of radiation?

As of now, we have decided that vaginal brachytherapy is a must, so is chemo. We are going to talk to the radiation oncologist once more and ask him for specifics of external pelvic radiation and how and where he plans to shoot that beam before we decide to jump in.

Your support is wholely appreciated!

Love,
Rebecca

Lou Ann M

rcdeman said:

Wow, thanks for letting me

Wow, thanks for letting me know... it goes to show that everyone's response and reaction to the various treatments varies immensely. If we do decide to do external pelvic radiation, we can only pray she responds similarly to you. Did you do anything in particular (a routine, a change in diet, medication, supplements?) during this period of radiation?

As of now, we have decided that vaginal brachytherapy is a must, so is chemo. We are going to talk to the radiation oncologist once more and ask him for specifics of external pelvic radiation and how and where he plans to shoot that beam before we decide to jump in.

Your support is wholely appreciated!

Love,
Rebecca

I agree with Kim

i had the sandwich treatment with 28 external radiation treatments  and,two brachytheespy between the chemo.  And-am glad that i did.  I figured I needed to fight this beast with everything.  I had no major side effects during  radiation., a little fatigue and a little diarhea which was easy to control with a low fiber diet and Imodium.. I did end up with some problems with my blood taking longer to recover from chemo. I also blame it for some weakness in my pelvis.  I would do it over if that situation came up again.  We all have to do what we thino is best for our unique situation.

Hugs and prayers, Lou Ann

rcdeman

Another UPDATE 09/30/16 Second Surgery???

We went to my mom's gyn/onc appointment today to discuss her PET/CT results and to discuss our next treatment steps.

So I might have mentioned previously that the PET/CT scans taken just this last Monday showed no visible hypermetabolic activity other than one section that showed hypermetabolic fluid around the pelvic area. The gyn/onc tells us that this fluid is nothing to worry about because it is most likely caused by surgery. Rather, it is the after-effects of surgery and is commonplace. He explains that one weekend of leaking fluid and the continuous small amounts of leaking is normal, is most likely actually part of the fluid we see in her scans, and will be reabsorbed by her body in several months.

He did mention that it is possible that the fluid could have cancer cells because her peritoneal washings came out positive.

So what is his recommendation right now? We didn't expect this after the results of the PET/CT scan, but he recommends a second surgery to remove the remaining para-aortic lymph nodes (and omentum) that he failed to remove the first time around! He said he discussed this with a tumor board (3 medical oncologists, 1 radiation oncologist, and 3-4 surgeons) and they all came to a consensus to recommend removing the para-aortic lymph nodes and omentum.

I asked him the reason why he recommends the second surgery if the PET/CT scans came out clear (other than that blasted fluid) and he mentioned how previous CT wasn't able to detect that one positive lymph node that was removed until pathology tests (after surgery) were completed. (PET/CT scans can't detect anything less than 8mm). He also says he wanted to know the baseline of just where we're standing in terms of the cancer. He and the tumor board agreed that with the removal of the para-aortic lymph nodes, we can possibly lower the chances of needing external pelvic radiation in the para-aortic area and minimize long-term side effects.

When I asked him whether removing more lymph nodes would have long term side effects such as lymphadema, he says there's a chance, but that it is usually external radiation that causes and exacerbates lymphedema, not the removal of the para-aortic lymph nodes. I'm not sure what to think regarding this as there are people who have had lymph nodes removed and no radiation performed that still suffered the effects of lymphadema while others have. This seems to be a huge concern for my mom who doesn't want to live with lymphadema for the rest of her life.

One important note that I have to make though is that apparently this discussion with the tumor board took place before her PET/CT scans, so they have no knowledge of the new data we have to work with right now-- that there is no sign of metastasis or hypermetabolic activity in her pelvic or abdominal area. (Of course, this is not completely accurate as PET/CT scans can't detect microscopic hypermetabolic activity.)

Seeing that my mom was hesitant about agreeing to a second surgery, he told us that this is ultimately our choice and that going to chemo treatment next would be a viable alternative. He also told us to talk with her radiation oncologist once more to ask him about the possible repercussions and long term side effects.

I called my mom's radio/onc to talk to him about this and asked him for his opinion. He said he would defer to my gyn/onc since he was the one who actually performed surgery on her, treated her, and would know best. However, he did mention that it might be a good idea to ask him to re-discuss this with the tumor board with the updated PET/CT scans they didn't have the last time. (However, as the tumor board doesn't meet very often-- maybe once or twice a month at most-- this may delay surgery and/or treatment.)

So right now we are ultimately trying to weigh the options: Would it be better to just go through with the second surgical procedure and remove the unknown number of para-aortic lymph nodes (could be many or could be few depending on the person) and the omentum, go through another several weeks of delay without chemo to wait for healing just to possibly minimize external radiation treatment to the upper abdominal area? Or would it be be better to forego the surgery, go directly to chemo in a few weeks and then followed by radiation?

We are so confused right now. I would love to know what some of you guys think, just as a springboard for my mom and I as we consider and battle out the pros and cons of each option.

Rebecca

MAbound

Tough decision

You and your mom are truly in a tough spot because your doctor did not check the para-aortic lymph nodes and omentum during the first surgery. Not because it would have made treatment decisions any simpler, but because you wouldn't be so worried about missing information that would have helped you feel more confident about whatever course of action you ultimately decide on. The importance of that can't be understated! 

I hesitate to give you any advice because in no way do I have the expertise that your doctor has and he's to be commended for consulting with others rather than thinking he has all of the answers himself for a situation with so many variables. The real problem lies with the fact that there will be no guaranteed outcome no matter what you do. That's the dilema for all of us. No matter what treatment we have or have had, we still all live with the fear that the cancer will recur at some point in the future for the rest of our lives. That's our new reality. That said, you want to do what it takes to give your mom her best chance at dancing with NED for a long time. It won't be easy, but it will be worth it as she gets each step behind her.

I don't know if this helps, but I'm recovering from a 2nd surgery I had this past Tuesday. I had a radical hysterectomy with an open abdomen the first time and this 2nd surgery was a laparoscopy with a 2nd pelvic wash via Da Vinci robot. It was a piece of cake compared to the first surgery! I'm still waiting for the results which will help for deciding what direction my treatment goes in next. The wait is the hardest part of this, of course!

 

 

Kvdyson

rcdeman said:

Another UPDATE 09/30/16 Second Surgery???

We went to my mom's gyn/onc appointment today to discuss her PET/CT results and to discuss our next treatment steps.

So I might have mentioned previously that the PET/CT scans taken just this last Monday showed no visible hypermetabolic activity other than one section that showed hypermetabolic fluid around the pelvic area. The gyn/onc tells us that this fluid is nothing to worry about because it is most likely caused by surgery. Rather, it is the after-effects of surgery and is commonplace. He explains that one weekend of leaking fluid and the continuous small amounts of leaking is normal, is most likely actually part of the fluid we see in her scans, and will be reabsorbed by her body in several months.

He did mention that it is possible that the fluid could have cancer cells because her peritoneal washings came out positive.

So what is his recommendation right now? We didn't expect this after the results of the PET/CT scan, but he recommends a second surgery to remove the remaining para-aortic lymph nodes (and omentum) that he failed to remove the first time around! He said he discussed this with a tumor board (3 medical oncologists, 1 radiation oncologist, and 3-4 surgeons) and they all came to a consensus to recommend removing the para-aortic lymph nodes and omentum.

I asked him the reason why he recommends the second surgery if the PET/CT scans came out clear (other than that blasted fluid) and he mentioned how previous CT wasn't able to detect that one positive lymph node that was removed until pathology tests (after surgery) were completed. (PET/CT scans can't detect anything less than 8mm). He also says he wanted to know the baseline of just where we're standing in terms of the cancer. He and the tumor board agreed that with the removal of the para-aortic lymph nodes, we can possibly lower the chances of needing external pelvic radiation in the para-aortic area and minimize long-term side effects.

When I asked him whether removing more lymph nodes would have long term side effects such as lymphadema, he says there's a chance, but that it is usually external radiation that causes and exacerbates lymphedema, not the removal of the para-aortic lymph nodes. I'm not sure what to think regarding this as there are people who have had lymph nodes removed and no radiation performed that still suffered the effects of lymphadema while others have. This seems to be a huge concern for my mom who doesn't want to live with lymphadema for the rest of her life.

One important note that I have to make though is that apparently this discussion with the tumor board took place before her PET/CT scans, so they have no knowledge of the new data we have to work with right now-- that there is no sign of metastasis or hypermetabolic activity in her pelvic or abdominal area. (Of course, this is not completely accurate as PET/CT scans can't detect microscopic hypermetabolic activity.)

Seeing that my mom was hesitant about agreeing to a second surgery, he told us that this is ultimately our choice and that going to chemo treatment next would be a viable alternative. He also told us to talk with her radiation oncologist once more to ask him about the possible repercussions and long term side effects.

I called my mom's radio/onc to talk to him about this and asked him for his opinion. He said he would defer to my gyn/onc since he was the one who actually performed surgery on her, treated her, and would know best. However, he did mention that it might be a good idea to ask him to re-discuss this with the tumor board with the updated PET/CT scans they didn't have the last time. (However, as the tumor board doesn't meet very often-- maybe once or twice a month at most-- this may delay surgery and/or treatment.)

So right now we are ultimately trying to weigh the options: Would it be better to just go through with the second surgical procedure and remove the unknown number of para-aortic lymph nodes (could be many or could be few depending on the person) and the omentum, go through another several weeks of delay without chemo to wait for healing just to possibly minimize external radiation treatment to the upper abdominal area? Or would it be be better to forego the surgery, go directly to chemo in a few weeks and then followed by radiation?

We are so confused right now. I would love to know what some of you guys think, just as a springboard for my mom and I as we consider and battle out the pros and cons of each option.

Rebecca

Second expert opinion from a well-respected cancer center

Rebecca, have you considered getting a second expert opinion from a well-respected cancer center to help your mom make a decision? A second surgery is not that unusual but just hearing the concern in your post makes me think that that might be a good next step. Let us know what you decide and good luck to you both! Kim

rcdeman

MAbound said:

Tough decision

You and your mom are truly in a tough spot because your doctor did not check the para-aortic lymph nodes and omentum during the first surgery. Not because it would have made treatment decisions any simpler, but because you wouldn't be so worried about missing information that would have helped you feel more confident about whatever course of action you ultimately decide on. The importance of that can't be understated! 

I hesitate to give you any advice because in no way do I have the expertise that your doctor has and he's to be commended for consulting with others rather than thinking he has all of the answers himself for a situation with so many variables. The real problem lies with the fact that there will be no guaranteed outcome no matter what you do. That's the dilema for all of us. No matter what treatment we have or have had, we still all live with the fear that the cancer will recur at some point in the future for the rest of our lives. That's our new reality. That said, you want to do what it takes to give your mom her best chance at dancing with NED for a long time. It won't be easy, but it will be worth it as she gets each step behind her.

I don't know if this helps, but I'm recovering from a 2nd surgery I had this past Tuesday. I had a radical hysterectomy with an open abdomen the first time and this 2nd surgery was a laparoscopy with a 2nd pelvic wash via Da Vinci robot. It was a piece of cake compared to the first surgery! I'm still waiting for the results which will help for deciding what direction my treatment goes in next. The wait is the hardest part of this, of course!

 

 

Thanks MAbound.

Thanks MAbound.

I have to admit that I am rather upset at how things have played out so far. The thing is, most people get diagnosed of their type of cancer before hysterectomy, either with D&C or a biopsy, resulting in a more accurate staging. My mom did not get a biopsy because her normal gynecologist went on vacation and left her dry for a month. She wasn't even planning to tell my mom about her ultrasound and pap results (which were abnormal) until she came back from vacation, which would have delayed everything for a month. But my mom was persistent and called her office before she went on vacation and managed to get the results. However, her gynecologist told her that she won't be able to do her biopsy until she comes back from her vacation.

So we were left to wait. By the time the gynecologist came back, she pushed us off via referral to the gyn/onc and told us that he would do everything (biopsy and all) now. After much waiting and asking if we could either get a biopsy or D&C to determine her cancer type, we were told that they would just do D&C on the same day of the hysterectomy. Because of this, the gyn/onc thought he was dealing with a Stage 1A, low grade endometrial cancer. He decided not to take out the para-aortic lymph nodes and the omentum because he thought he didn't need to. Little did he know that it was UPSC. If he had known it was an aggressive Grade 3 cancer, he would have had the foresight to remove the omentum and para-aortic lymph nodes the first time.

Unfortunately, whatever has happened has happened, and we must deal with the cards we have now. So we are resignedly leaning more towards the idea of a second surgical procedure right now after we spoke with our radio/onc on the phone yesterday. It really sucks that my mom has to go through a second surgery so quickly after the first one, but I'm hoping she will heal up quicker this time around. This will delay the rest of the treatment again, but there is not much we can do. We're just hoping her PET/CT scans results are accurate and she stays "clear" while all this happens. I would hate to have metastasis happening during all of this waiting and less than ideal circumstane.

Thanks for your support! Will keep you all updated, as always. I find that posting on this board with updates gives me an outlet of some kind, and I hope you all don't mind. It's nice to see all the encouragement, comfort, and support we have here, and it makes the burden a little lighter to carry.

Love,
Rebecca

rcdeman

Kvdyson said:

Second expert opinion from a well-respected cancer center

Rebecca, have you considered getting a second expert opinion from a well-respected cancer center to help your mom make a decision? A second surgery is not that unusual but just hearing the concern in your post makes me think that that might be a good next step. Let us know what you decide and good luck to you both! Kim

Thanks for your advice, Kim.

Thanks for your advice, Kim. We will definitely consider it and seek out second/third opinions from the well-known cancer centers that are near our area. In the meantime, our radio/onc did advise us to maybe ask for a new tumor board (with the updated PET/CT results) to give their opinion. I will ask the gyn/onc about this first thing Monday. I would like to know if the opinions change with this new information.

We appreciate your continued support!

Love,
Rebecca

beccabtown

Rebecca, It's not accurate to say that most people are diagnosed based on a biopsy before surgery. Most have biopsies done, but those give only a general indication of the type of cancer that might be present. It is only with surgery that endometrial cancer can be staged and identified. Being referred to a gyn onc was a good thing. I don't know how to account for the surgeon not removing lymph nodes, other than to note that all these decisions are made based on sight during surgery, I believe. (My surgeon told me beforehand she expected to remove my omentum, and then only removed part of it because she found no sign of cancer there. I do rather wish she had gone ahead and taken it out, but I'm sure she had her reasons for not doing so.) I hope it gives you some peace of mind to hear this. I agree that it sucks that your mother has to have a second surgery, and I wish her the best.

rcdeman

beccabtown said:

Rebecca, It's not accurate to say that most people are diagnosed based on a biopsy before surgery. Most have biopsies done, but those give only a general indication of the type of cancer that might be present. It is only with surgery that endometrial cancer can be staged and identified. Being referred to a gyn onc was a good thing. I don't know how to account for the surgeon not removing lymph nodes, other than to note that all these decisions are made based on sight during surgery, I believe. (My surgeon told me beforehand she expected to remove my omentum, and then only removed part of it because she found no sign of cancer there. I do rather wish she had gone ahead and taken it out, but I'm sure she had her reasons for not doing so.) I hope it gives you some peace of mind to hear this. I agree that it sucks that your mother has to have a second surgery, and I wish her the best.

Hi Becca,I understand that

Hi Becca,
I understand that usually staging, etc. is done after surgery. However, I have yet to see anyone who was diagnosed with UPSC on this forum that had to have two surgeries. It seems to be a rare occurrence. I'm just upset that my mom has to go through another surgery again so soon after the first one when it technically could have been avoided had there might more foresight and more responsibility on the part of the her initial gynecologist. We had to call her and pressure her in the first place for our results before she even went ahead and referred us to the gyn/onc. I'm not sure how other UPSC patients have been diagnosed and why their gyn/onc was able to determine to remove their para-aortic nodes and omentum but my mom's gyn/onc apparently didn't.

iloverunning

Not always black and white....pathology

my moms ob/gyn diagnosed her with endometriod Cancer and referred her to a gynonc. He had his pathologist look at her slides and changed it to uspc. So thankfully she did have the full abdominal omenectomy and paraortic lymph nodes removed. But what he said pathology is not black and white. So lesson learned. Even though we trusted him we had my moms pathology after hysterectomy sent to Mayo Clinic. Seems like a second opinion on pathology is almost a must.  something for your mom to consider with this next surgery. Thinking of you.