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Cheese Update

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

So new renal stent has also become intolerable. Nothing cuts the pain including medical marijuana. I’ve resorted to ice packs to the crotch. I’m seeing a urologist at Johns Hopkins on Thursday for a second opinion and I see my regular urologist on June 18. There’s got to be another solution. 

MAbound
Posts: 783
Joined: Jun 2016

It's very upsetting to read how a number of us are suffering from such intractable pain, whatever the cause. I feel like we are all strong women who can get through what we have to as long as there is a light at the end of the tunnel that we can reach for, but not knowing if there is an end in sight has got to make enduring so much harder. I pray that you and all the others find answers that bring you some relief so that you can get some sleep and live your lives as you are supposed to. Quality of life matters so much!!

barnyardgal
Posts: 185
Joined: Oct 2017

I'm glad you're getting a second opinion. It seems like there has to be a solution to this constant pain. I'm sorry you're hurting and I hope the new doctors have better ideas to help.

EZLiving66's picture
EZLiving66
Posts: 1304
Joined: Oct 2015

I am so sorry, Susan!!  This is terrible - there just has to be a better way.  I wish there was something I could say or do to make it better but just know I'm here for you!  (((Susan))) <3

Love,

Eldri

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2522
Joined: Mar 2013

CQ, not all hospitals are the same - you are going to one of the top hospitals out there.  Johns Hopkins has done wonderful things and I hope they are the answer for you as well!

SF73
Posts: 251
Joined: Oct 2017

I really hope that they can find a solution for the pain you are experiencing. It is not acceptable how long you have been suffering. Best of luck in your appointments!

derMaus's picture
derMaus
Posts: 533
Joined: Nov 2016

Oh Cheese, this must seem like a horrible nightmare from which you can't awaken. I'm glad you see someone so soon but hope they get this **** undercontrol. If not, tell Johns Hopkins that they will have a bunch of pissed off uterine cancer survivors camped out on their front lawn with signs saying FIX SUSAN NOW!! These doctors, every single one of them, should be profoundy ashmed of their failure to find you relief. With love always, B

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Ditto what derMaus said. I'm so sorry you're going through this so repeatedly and without relief. I really hope Johns Hopkins comes through for you.

Donna Faye's picture
Donna Faye
Posts: 202
Joined: Jan 2017

So, so sorry you have not been given more relief from this...I do hope your doctors can come up with the best plan for you. You have been such a trooper in all of this. I stand with derMaus on LH lawn!

Jairoldi's picture
Jairoldi
Posts: 192
Joined: May 2017

Sometimes it's just all too much! I'm with DerMaus and the other ladies - Fix Susan Now!!

MoeKay
Posts: 187
Joined: Feb 2004

I hope that the urologist at Hopkins comes up with a better solution for you tomorrow.  I can't believe there is not an alternative way of addressing the problem that won't cause you to be in such pain!!   I too agree that one of these great minds must find a way to Fix Susan Now!!!! 

 

barnyardgal
Posts: 185
Joined: Oct 2017

Thinking of you today. I hope the appointment goes well!

Northwoodsgirl
Posts: 498
Joined: Oct 2009

Thinking of you today as you seek relief at Johns Hopkins. Praying they have better abilities to diagnose and intervene to stop your suffering! ((Hug))

Lori

Harmony09's picture
Harmony09
Posts: 75
Joined: Aug 2017

Thinking of you today as well. Just let us know when you feel up to it...my camping gear stays packed ;)

Fix Susan NOW!

Sincerely,

Stacey

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Well, I have a better understanding of what may be going on with my ureter problem but there may not be a solution other than perpetual stents. The Hopkins doc explained that although the blockage may be caused by scar tissue caused by either surgery or radiation, there also may be cancer there because of the proximity of my reoccurence in the peritoneal area. The only way to know that would be to biopsy the area which comes with its own risks. If cancer is in the area, surgery is not possible. If cancer is not in the area, surgery is possible but not without risk. Although my cancer seems to be in remission, I’m sure there’s a few little seeds in the area.  The ureter is very delicate and there’s all kind of bad things that can happen with surgery. Although surgery can most likely be done laproscopiically, there’s a chance it could lead to open surgery which is a nasty lateral incision. He didn’t have a lot of solutions for stent pain. He says it’s a very frustrating area. They can try different stents but there’s no good solution. He said I probably have more bleeding because of the Eliquis. I asked about how harmful the perpetual inflammation of the bladder is and he admitted it’s not good and over time could cause bladder cancer. So that is my situation. He doesn’t really do this types of surgery. There is a group affiliated with NYU that appears to deal with this issue. I may contact them for an opinion. Conveniently my son is moving to NYC in the next month so I could stay with him. But I’m not sure that’s the way to go. I have an appointment with my regular urologist on June 18.  I’m glad I went to Hopkins. The doc was very nice and gave a good explanation which unfortunately I had yet to get from my regular urologist. 

Thanks for all your concern and support. 

gbazyl's picture
gbazyl
Posts: 23
Joined: Feb 2018

and hope that whatever you choose to do helps....

evolo58
Posts: 292
Joined: Dec 2017

I so hate when it's an either/or situation, and one is fixable and the other far more complicated. You would think somehow there would be a better way to tell. It's frustrating. I guess it can frustrate doctors as well. What should they tell their patients? Do they risk giving them false hope, or alarming them for no reason?

If surgery is not possible, are there any alternatives? Any neoadjuvant treatmtents?

I hope the group at NYU can give you far more satisfactory answers and far more promising solutions, if that's what you choose. Or if anyone else can.

Armywife's picture
Armywife
Posts: 230
Joined: Feb 2018

You've been through so much and you keep going with such pain.  I'm in awe of you.  Praying for relief, and fast!

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

I am so sorry for how you feelFrown
I read that you are from an area near me. I live in South Jersey and I am going to have my hysterectomy at Cooper Md Anderson Cancer center.
Diagnosis by D&C is Endometrioid adenocarcinoma grade 2
I hope you find relief to your pain :)

Abbycat2's picture
Abbycat2
Posts: 639
Joined: Feb 2014

I am hoping that you finally find some relief from your pain. I can’t  even imagine what you are going through. I can say that we- all the women who post on this Board- are here for you and support you with your treatment decisions. 

Hugs and Warm Wishes,

Cathy

Soup52's picture
Soup52
Posts: 887
Joined: Jan 2016

Cheese I’m so sorry for all you are going through!

Harmony09's picture
Harmony09
Posts: 75
Joined: Aug 2017

Hi Cheese!

I was really happy to hear from you after your visit at Hopkins. I'm so sorry there wasn't a solution, but the understanding is better. Perhaps the other doctor can change up or increase the pain management with the new information. I just hope you feel some relief! You and a handful of other women are my heroes on here. I have gained so much wisdom and hope from y'all. Please know you're in my continued prayers. 

Sincerely,

Stacey

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Still having stent pain. I found that an ice pack to the crotch gives a little relief. So I’m seeking out those ice packs new mom’s use. I also discovered that the urology group at Hackensack University Medical Center does surgery for this problem and fortunately the wife of the CEO is an old friend of mine so she smoothed the way for me getting an appointment. They actually were willing to see me that afternoon!  It pays to have friends in high places! But I opted to see the head of the department in July after my next CT scan. My appointment with my urologist at Fox Cjade was disappointing. She had no solutions. Actually told me she had patients that have had stents for 10 years. Despite the fact that the stats for me having 10 more years are dismal, I certainly don’t want to live them with this damn stent. 

On another note, I found out that my oncologist is going to Penn and I’m considering transferring my care there. 

Thanks for your continuing concern my fellow warriors. 

MoeKay
Posts: 187
Joined: Feb 2004

In case you haven't seen it, here's an interesting article I came across on a man from Serbia who had surgery by Dr. S at HUMC:  http://www.hospitalnewspaper.com/webpages/news/displayNews.aspx?PT=news&ID=2c8f6d20-0957-40e9-ad4d-d3cde8dfa418.  Although this gentleman's condition, retroperitoneal fibrosis, sounds somewhat different than yours, the article states towards the bottom that, "Even though retroperitoneal fibrosis is a relatively rare condition, we use the same minimally invasive approach to treat other conditions involving obstruction of the ureter including patients with scar tissue from previous surgeries, patients who have had aorta aneurysms and patients who have had previous stone disease causing obstruction of the ureter. We use this technology to treat almost all upper urinary tract reconstructive procedures.”

This sounds extremely promising, Susan, and I hope you can find a permanent solution to your problem, because you can't spend the next 30-35 years in pain and getting replacement stents every few months!! 

Good luck and good health to you!

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Thanks for sharing!  This is the doc I’m seeing. The doctor did describe my condition as retroperitoneal fibrosis but the cancer complicated the situation.  I love you ladies!! I’ll keep you posted. 

MAbound
Posts: 783
Joined: Jun 2016

Thanks for the article MoeKay, it certainly was interesting and very uplifting to read since it turns out that this is actually what Susan has. Keeps hope alive that there is a solution to this coming.

I can't stand the thought of anyone in constant pain and have been keeping all dealing with it in my prayers. We haven't heard from Der Maus in a while and I'm quite worried about what's going on with her. Sending thoughts and prayers for strength and progress her way!

Susan, you've been amazingly strong and proactive through all of this. You are amazing!

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

My CT scan today was clear!  Praise the Lord!  The Megace continues to do the trick. Met my new oncologist today. Think I’ll stick with Fox Chase for now. Stent still painful although my bright idea of going for pelvic floor physical therapy I think helped a little and although my kidney scan was good a couple weeks ago the CT Scan this week showed some swelling of kidney so assume stent is getting crusty. I’m scheduled for stent replacement August 10 but I have appt with the doc at Hackensack so we’ll see what he says. Only relief is ice pack to crotch. Soldiering on!  At least no visible cancer!  

Jairoldi's picture
Jairoldi
Posts: 192
Joined: May 2017

That's terrific. A clear scan! Now to get that pesky stent to behave.

derMaus's picture
derMaus
Posts: 533
Joined: Nov 2016

Oh Cheese that's wonderful! Thank you for letting us know. It's so important to share the good things and that's a BIG ole good one. Now if only the stent-from-hell weren't being a butt head...

EZLiving66's picture
EZLiving66
Posts: 1304
Joined: Oct 2015

Great news but now we need to get that stent pain under control!! (((Susan)))

Love ,

Eldri 

MrsBerry
Posts: 102
Joined: Dec 2017

So glad there is no cancer! Soldier on, indeed, warrior!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1477
Joined: Jun 2015

Cheese, YES!!!!!  So glad to hear this wonderful news. I hope they come up with a better solution for your stent soon.

Love and Hugs,

Cindi

SF73
Posts: 251
Joined: Oct 2017

Congrats on a clean CT Scan, Cheese. What a relief. I hope once replaced stent would not give you any trouble. 

Armywife's picture
Armywife
Posts: 230
Joined: Feb 2018

What great news!  So happy for you, and praying you get some relief on the stent front.  

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Thank you for the update and kudos on clear CT
Ice packs to the crotch area I am using myself every now and then for discomfort after Hysterectomy. Question, do you have specific ones for that purpose. If you do, do you get them at Medical supply store?
Hugs!

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

My fancy ice packs are frozen water bottles. I find they work the best. 

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

Tongue Out Laughing

 

derMaus's picture
derMaus
Posts: 533
Joined: Nov 2016

Ooohh that IS fancy, you minx you!

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Yes, permanent ice bottles to the crotch. I’ve even learned to walk with them. 

derMaus's picture
derMaus
Posts: 533
Joined: Nov 2016

Oh sweetie, that IS TOO D**N MUCH along with (or because of?) the stent. Crappity crap crap crap. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2522
Joined: Mar 2013

So happy to hear your good news, CQ.  I am wondering how many of the other ladies are picturing you walk with the ice bottle in your crotch.  Yell

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Actually it’s kind of a waddle. But the good news is I met with the urologist at Hackensack. He thinks he can trim that darned stent so it won’t cause me such pain and he’s going to replace it this Thursday. Fingers crossed it works. He’s not willing to do surgery just yet. Says I haven’t had enough time NED under my belt to be sure there’s not cancer in the area. I’m okay with perpetual stents as long as I don’t have the darned pain. Keep you all posted. It will be such a blessing if it works. 

derMaus's picture
derMaus
Posts: 533
Joined: Nov 2016

For what it's worth, I've never been one to avoid surgery, but I had a sobering conversation w/my oncologist last Friday that's causing me to reconsider. In response to my question as to how my 8 cm mass blew up to a 14 cm mass in 5 weeks, he said that, although there's no actual proof of it, oncologists who'd been in practice for awhile often noted that opening the abdomen can cause cancer to grow. He was very careful to say that there's no scientific proof but anecdotal evidence is good enough for me in this case. I'm going to try to avoid any further surgeries, except perhaps for my perpetually-delayed cataract surgery. I'm thrilled that you might be able to do the same. Best wishes always, B

oldbeauty
Posts: 180
Joined: May 2012

I am so happy for you Cheese!  I got a good 5 years from hormone therapy.  Rock on!!  Best wishes, Oldbeauty

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Thanks everybody!  Old Beautumn, I’m hoping for at least 5 years!  By then who knows what kind of new therapies we’ll have. Soldier on my friends!

cmb's picture
cmb
Posts: 316
Joined: Jan 2018

So glad to hear that Megace is working for you. I hope you and your doctors can find a solution to the stent problem soon.

Wannabeatit
Posts: 97
Joined: Dec 2017

That is great news! Now for that darn stent grrr.

 

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

I just got back from vacation and am still getting caught up on my reading. Can't tell you how delighted I am to learn of your clean scan. 

takingcontrol58
Posts: 234
Joined: Jan 2016

DerMaus,

Here is what happens during surgery.
1) Surgery severely compromises your immune system, which you need to kill cancer cells.
Anesthesia also comprosises the immune system.

2) Surgery generates growth factors to heal your surgical wound, growth factors that can be
hijacked by cancer cells to help produce metastasis- the growth factor is angiogenesis, which
is involved in cancer metastasis. This is the growth of new blood vessels which our body uses
to heal surgical wounds and cancer cells take advantage of this process. When you are cut open, billions of
cancer cells escape and can take advantage of the angeiogensis process that has been
initiated. Avastin is given to target angiogenesis.

3) Surgery removes natural barriers that stop tumor growth, as the surgeon cuts through tissue
and blood vessels. The surgeon also does not remove all the escaping cancer cells.

4)  Surgery creates inflammation; inflammation is a risk factor for cancer.

I had an abdominal hysterectomy and an exploratory laparatomy and was in surgery for five hours.
Two months later I had tumors all over my body. There is no doubt that surgery helped the cancer cells travel
throughout my body. The tumors formed because I had a toxic body and did not know it at the time, and these
toxins provided fuel to grow new tumors, after surgery released all those billions of cancer cells.

Takingcontrol58

 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Dear Sisters:  2 years ago I was afraid I wouldn’t be here to celebrate my 61st birthday. Praise the Lord I’m still here. 

I had my stent replaced August 2 and now a month out I still have some pain but I have elected to not get it replaced until November. My doctor changed my medication which has seemed to reduce the bladder spasms. In fact, i’ve gone to two parties this weekend so I guess I’m coming out of my shell. I still don’t have much endurance and get breathless but I’m going to NYC to see my son next weekend and to California towards the end of the month so I’m pushing through. 

My doctor said if I can remain NED for a year (that would be January) he would consider surgery for a permanent fix. He’ll try to shorten the next stent even more. That gives me hope for a permanent solution. 

Meanwhile with the love of my family and friends and all of you I will continue to soldier on no matter what comes next. I now have to deal with the reflux. At least the GI doc is a cutie and has an adorable German accent. 

Have a great holiday. Susan

derMaus's picture
derMaus
Posts: 533
Joined: Nov 2016

And many, MANY happy returns!! I can vouch that 61 is a good place to be, having gotten there a few months ago myself. I hope that all of your 60's will be good, along with your 70's and 80's and so on. Thank you for letting us know you're coming out of your "shell", that's sure something I can relate to. Best wishes and enjoy yourself! B

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