Hello everyone!
Over a year ago, last September, our nightmare began. My dear Mother underwent an emergency surgery for perforated diverticulitis, during which her sigmoid colon was resected. During surgery a large rectal mass was discovered, but not resected. Biopsy showed adenocarcinoma. CT scans showed liver lesions (some scans showed 2, some 4). Though the lesions were not biopsied, she was diagnosed with Stage IV colon cancer. Her post-operative course was difficult, including 11 days on a ventilator and gaining over 70 pounds in 3 days due to volume overload, as well as a wound dehiscence. We were also told that pleural effusions she developed were malignant (though cytology returned 3 times as negative for malignant cells). We were told nothing could be done to treat her. There are no words to describe...
We were told that if she could walk again (which she did not following her surgery), if her nutrition improved, and if her wound healed, she might be a candidate for treatment of some kind. To that end, a hospice representative was brought around who told us that he could aid in our goals. We returned home alone, with the express goal of getting her well enough for treatment. The next day, her chest tube fell out and we returned to the ER. She had developed pneumothorax. We returned to the hospital where her surgery was performed, where we were again told that no treatment could be offered to her. In October, a CT scan showed a "residual soft tissue mass" measuring approximately 6 x 3 cm and no change in the liver lesions. At the end of November, we again returned home, this time with nursing care and physical therapy. Her wound was practically healed by January and she began walking again with assistance. In March, her wound reopened (very deeply) and we returned to our local ER where she was diagnosed with a post-surgical wound abscess. A CT scan performed that day showed a "normal" liver and made no mention of a rectal tumor, but described the rectosigmoid as "fluid-filled". After the abscess reopened the wound, she again became bed bound. A scan taken two weeks ago compared with the one in October (but not the March scan) shows liver lesions slightly decreased in size and a "heterogeneous pelvic mass" involving the rectum, uterus, and bladder and extending through the abdominal wall. A wound specialist we saw said he was confused, and doesn't know if that mass is an abscess or tumor or what, but said there is nothing he can do either. In the meantime, the wound continues to heal. She doesn't experience abdominal pain aside from discomfort from the open wound itself, but she doesn't require any pain medication for that. Her belly is not distended and her pleural effusions are practically gone. Her appetite is fine and she is feeling strong. What in the world is going on? I am so frightened and confused. What is true and what is not? This is true torture!! I would so appreciate your input!! Thanks everyone!!
Our nightmare
Re: Our nightmare
Whenever I don't know what the hell or the doctor doesn't know what the hell it's time for new doctors. Your mother should not be treated like this. How old is she? It sounds like everyone is treating her, like its all over? Please go and get a second opinion.
Cherie
Cherie
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel
Re: Our nightmare
She's a very young 71 now, 70 at the time of her surgery. Very strong too!! She was extremely active before all this happened. We did everything together and I can't believe what has happened to us. It doesn't seem real.
Yes, they've been writing us off since day 1!! I've been a nervous wreck for over a year now and my Mother has to calm ME down! We only have each other and this experience is harrowing and confusing and frightening. In the days after the surgery, when she was still on the ventilator, one of the members of the surgical team at the hospital said, "She'll never go home again. She'll go from here to a nursing home and then hospice." He also said, "You'll never have the Mother you knew again." Despite her express wishes to have all medical treatment available, he said he wanted me to change her status to DNR and stated that he did not want to perform CPR on her. I was in shock then, and I've never come out of it.
I still don't understand why they didn't remove the malignant tumor and we don't even have a clear idea of how large it is. This is how it developed. On her original CT scan from our local ER, the radiologist noted abscesses and a mass in the sigmoid, which he favored being a large sigmoid carcinoma or, less likely, a diverticular mass. Well, during the first surgery, which was an emergency due to peritonitis and sepsis, the sigmoid was resected and sent to pathology. The surgeon said that he saw something in the rectum and chipped away at it, but was unable to get it. The original sigmoid specimen came back as negative for malignancy (I was never told this, but learned it from the pathology report later). There was a thickened wall due to diverticulitis though. (Wouldn't this be what the radiologist thought was a large sigmoid carcinoma? He never noted a rectal carcinoma.) Two days later, they went back in to try to get the rectal mass and create a colostomy. This time, some more tiny pieces of the mass were resected, and they did a frozen section biopsy during the operation, which returned as adenocarcinoma, specifically "fibrous tissue with foci of adenocarcinoma". A few days later, the pathologist did several rerun sections of the original rectosigmoid specimen and found "a single microscopic focus of adenocarcinoma" on the serosa, but no mucosal tumor identified. Don't tumors grow from the inside out? How did it get there? No one has explained this to us. The operative report from the first surgery states that when they were resecting the rectosigmoid, they "stapled through the tumor"...so, why did pathology come back as negative for malignancy? If this is a large mass, wouldn't it be entirely malignant? Later, the surgeon said that was because they thought they got some of the tumor the first time, but didn't and that is why they took another specimen during the second surgery. So, why didn't they remove it? Well, the operative report says that it was considered too low for a LAR, which is what the surgical assistant told me following the second surgery. He said that an APR could be tried in the future. Later, the surgeon said it was not removed because my Mother was too inflamed and it was too "socked in", but that if they went back in, they would do a completion LAR. The operative report states that it was 9 cm from the anal verge. By the way, these were all trauma surgeons...no colorectal surgeon was involved at any time. According to the operative report, before the second surgery, they tried to perform a biopsy with a rigid sigmoidoscope, but the proper instruments were not present???!!!
We just don't understand how a mass the size of a grapefruit wouldn't stand out on a CT scan (the one taken in March at our local ER). And now, if it is invading her uterus and bladder and abdominal wall, wouldn't it be very painful? Plus, if you take the size it was in October, 6 x 3 cm...and assume it is the "heterogeneous pelvic mass" they are seeing now, measuring 15 x 9 cm, where was it hiding in March? We specifically asked the radiologist if his note that the rectosigmoid was fluid-filled could represent the mass and he said no, that he saw nothing that would represent a tumor the size of a grapefruit. Also, has anyone heard of liver metastases that don't grow in a year's time without any treatment whatsoever? At the least, wouldn't that be a good sign in regard to their aggressiveness?
Dear God, how I wish we could get a second opinion!! I found a colorectal surgeon in another state, at a national cancer center, and contacted his office back in February. He said he would be happy to give us a second opinion and I got all of our records ready and sent them along. He was just waiting to set up an appointment and my Mother was beginning to walk again, so we were almost there, but then the wound abscess opened and we've been in a holding pattern ever since. It's almost healed though, so I'm hoping and praying that she'll be up again soon. That would change everything, I hope.
Even after this much time, it is so difficult to process all of this. Any feedback is most appreciated! Thanks everyone!!
Yes, they've been writing us off since day 1!! I've been a nervous wreck for over a year now and my Mother has to calm ME down! We only have each other and this experience is harrowing and confusing and frightening. In the days after the surgery, when she was still on the ventilator, one of the members of the surgical team at the hospital said, "She'll never go home again. She'll go from here to a nursing home and then hospice." He also said, "You'll never have the Mother you knew again." Despite her express wishes to have all medical treatment available, he said he wanted me to change her status to DNR and stated that he did not want to perform CPR on her. I was in shock then, and I've never come out of it.
I still don't understand why they didn't remove the malignant tumor and we don't even have a clear idea of how large it is. This is how it developed. On her original CT scan from our local ER, the radiologist noted abscesses and a mass in the sigmoid, which he favored being a large sigmoid carcinoma or, less likely, a diverticular mass. Well, during the first surgery, which was an emergency due to peritonitis and sepsis, the sigmoid was resected and sent to pathology. The surgeon said that he saw something in the rectum and chipped away at it, but was unable to get it. The original sigmoid specimen came back as negative for malignancy (I was never told this, but learned it from the pathology report later). There was a thickened wall due to diverticulitis though. (Wouldn't this be what the radiologist thought was a large sigmoid carcinoma? He never noted a rectal carcinoma.) Two days later, they went back in to try to get the rectal mass and create a colostomy. This time, some more tiny pieces of the mass were resected, and they did a frozen section biopsy during the operation, which returned as adenocarcinoma, specifically "fibrous tissue with foci of adenocarcinoma". A few days later, the pathologist did several rerun sections of the original rectosigmoid specimen and found "a single microscopic focus of adenocarcinoma" on the serosa, but no mucosal tumor identified. Don't tumors grow from the inside out? How did it get there? No one has explained this to us. The operative report from the first surgery states that when they were resecting the rectosigmoid, they "stapled through the tumor"...so, why did pathology come back as negative for malignancy? If this is a large mass, wouldn't it be entirely malignant? Later, the surgeon said that was because they thought they got some of the tumor the first time, but didn't and that is why they took another specimen during the second surgery. So, why didn't they remove it? Well, the operative report says that it was considered too low for a LAR, which is what the surgical assistant told me following the second surgery. He said that an APR could be tried in the future. Later, the surgeon said it was not removed because my Mother was too inflamed and it was too "socked in", but that if they went back in, they would do a completion LAR. The operative report states that it was 9 cm from the anal verge. By the way, these were all trauma surgeons...no colorectal surgeon was involved at any time. According to the operative report, before the second surgery, they tried to perform a biopsy with a rigid sigmoidoscope, but the proper instruments were not present???!!!
We just don't understand how a mass the size of a grapefruit wouldn't stand out on a CT scan (the one taken in March at our local ER). And now, if it is invading her uterus and bladder and abdominal wall, wouldn't it be very painful? Plus, if you take the size it was in October, 6 x 3 cm...and assume it is the "heterogeneous pelvic mass" they are seeing now, measuring 15 x 9 cm, where was it hiding in March? We specifically asked the radiologist if his note that the rectosigmoid was fluid-filled could represent the mass and he said no, that he saw nothing that would represent a tumor the size of a grapefruit. Also, has anyone heard of liver metastases that don't grow in a year's time without any treatment whatsoever? At the least, wouldn't that be a good sign in regard to their aggressiveness?
Dear God, how I wish we could get a second opinion!! I found a colorectal surgeon in another state, at a national cancer center, and contacted his office back in February. He said he would be happy to give us a second opinion and I got all of our records ready and sent them along. He was just waiting to set up an appointment and my Mother was beginning to walk again, so we were almost there, but then the wound abscess opened and we've been in a holding pattern ever since. It's almost healed though, so I'm hoping and praying that she'll be up again soon. That would change everything, I hope.
Even after this much time, it is so difficult to process all of this. Any feedback is most appreciated! Thanks everyone!!
Re: Our nightmare
A second opinion is a must. Sounds like you are at a small town hospital now. I hope your mom stays strong enough to get there!
Re: Our nightmare
Run to a certified colorectal surgeon ASAP, preferably a renowned one who can sort out this situation. Where are you located? Someone on here may know of a good place not far from where you live.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16
Re: Our nightmare
Thanks all for your kind replies! I appreciate them all so much and I want you to know what an inspiration you all are to us!
We are in Northern VA. Our local ER is smaller, but the hospital where the emergency operation was performed is one of the largest in the area. Transporting her is the main problem in getting anywhere, as she is not ambulatory. She was doing so great before the wound reopened! The hospital is still overseeing her home care, so if they approve of a doctor they provide an ambulette to transport her there. We've done that 4 times since May, starting with a trip to the clinic of the trauma surgeons who performed the surgery. Since the surgeon who performed her surgery no longer works at the hospital(!!!!), we saw one of his colleagues, who said that if her wound was chronic (but really it was only the abscess that had reopened it), there was no sense in her returning there. It's strange though because when we were arranging for discharge from the hospital last November, one of the administrators there told us that the surgeons who operated on her were "obligated" to follow the wound. Anyhow, he referred us to a wound care center run by the hospital. Off we went, but that doctor said he thought there was a communication between the wound and something beneath it, so a fistula or an abscess. I asked him if he had looked at the scans from March (from our local ER, not the operating hospital) and if he thought he saw anything on the liver or in the rectum. He said he was not an expert at reading CT scans, but no, he didn't see anything. He said we would need to go back to the trauma surgeon or a general surgeon. Since the former had pretty much told us not to return, he gave us a referral to the latter. Appointments take forever, but a couple of weeks later, we went to the general surgeon. He said he would need a couple of weeks to review the records and made another appointment for us. A day before that, the hospital called and told us that he was not on the "approved" list. We could see the wound specialist, the trauma surgeon, or an internal medicine doctor they chose. We made another appointment with the wound specialist and had the CT scan the trauma surgeon had ordered, which as I mentioned previously showed a "markedly" increased mass compared with the October scan. The wound specialist said he was confused, but until they could figure out what it was, he couldn't do anything. He also gave us a referral to an oncologist. The hospital said that the oncologist was not "approved", but after speaking with the trauma surgeon and the internal medicine doctor decided that we could see him and they would arrange transport. That's where we stand as of Friday. At the hospital though, a couple of oncologists came by and they said that if she didn't walk and her wound wasn't healed, there was nothing they could do. The wound specialist said that's not true. Oh God, why did that abscess have to develop in March? Her nutrition was great, her wound was practically all healed, and she was beginning to walk.
Just as an aside, when the surgeon who performed her operation saw her before our discharge, he said that they wouldn't touch the primary tumor if there was anything in the liver. Of course, I had read about bilateral hepatic resections and asked why they do them then. He mentioned a doctor in Texas by name and said, "Oh, he does them and he'll tell you his success rates are high, but I've seen patients die on the table with him." ??? What in the world? After all, he is a trauma surgeon, not an oncologist, a liver surgeon, or a colorectal surgeon. He also said that because my Mother had a bowel perforation, the tumor cells had spread into her belly and she was automatically a Stage IV since she would develop peritoneal carcinomatosis, whether or not she had liver metastases. I read about some people who had a bowel perforation, though, and they were Stage II.
The second opinion colorectal surgeon I had found is in NH...He sounds wonderful from what I've read. Truly, though, I fear now that no doctor will be inclined or able to sort this mess out.
We are in Northern VA. Our local ER is smaller, but the hospital where the emergency operation was performed is one of the largest in the area. Transporting her is the main problem in getting anywhere, as she is not ambulatory. She was doing so great before the wound reopened! The hospital is still overseeing her home care, so if they approve of a doctor they provide an ambulette to transport her there. We've done that 4 times since May, starting with a trip to the clinic of the trauma surgeons who performed the surgery. Since the surgeon who performed her surgery no longer works at the hospital(!!!!), we saw one of his colleagues, who said that if her wound was chronic (but really it was only the abscess that had reopened it), there was no sense in her returning there. It's strange though because when we were arranging for discharge from the hospital last November, one of the administrators there told us that the surgeons who operated on her were "obligated" to follow the wound. Anyhow, he referred us to a wound care center run by the hospital. Off we went, but that doctor said he thought there was a communication between the wound and something beneath it, so a fistula or an abscess. I asked him if he had looked at the scans from March (from our local ER, not the operating hospital) and if he thought he saw anything on the liver or in the rectum. He said he was not an expert at reading CT scans, but no, he didn't see anything. He said we would need to go back to the trauma surgeon or a general surgeon. Since the former had pretty much told us not to return, he gave us a referral to the latter. Appointments take forever, but a couple of weeks later, we went to the general surgeon. He said he would need a couple of weeks to review the records and made another appointment for us. A day before that, the hospital called and told us that he was not on the "approved" list. We could see the wound specialist, the trauma surgeon, or an internal medicine doctor they chose. We made another appointment with the wound specialist and had the CT scan the trauma surgeon had ordered, which as I mentioned previously showed a "markedly" increased mass compared with the October scan. The wound specialist said he was confused, but until they could figure out what it was, he couldn't do anything. He also gave us a referral to an oncologist. The hospital said that the oncologist was not "approved", but after speaking with the trauma surgeon and the internal medicine doctor decided that we could see him and they would arrange transport. That's where we stand as of Friday. At the hospital though, a couple of oncologists came by and they said that if she didn't walk and her wound wasn't healed, there was nothing they could do. The wound specialist said that's not true. Oh God, why did that abscess have to develop in March? Her nutrition was great, her wound was practically all healed, and she was beginning to walk.
Just as an aside, when the surgeon who performed her operation saw her before our discharge, he said that they wouldn't touch the primary tumor if there was anything in the liver. Of course, I had read about bilateral hepatic resections and asked why they do them then. He mentioned a doctor in Texas by name and said, "Oh, he does them and he'll tell you his success rates are high, but I've seen patients die on the table with him." ??? What in the world? After all, he is a trauma surgeon, not an oncologist, a liver surgeon, or a colorectal surgeon. He also said that because my Mother had a bowel perforation, the tumor cells had spread into her belly and she was automatically a Stage IV since she would develop peritoneal carcinomatosis, whether or not she had liver metastases. I read about some people who had a bowel perforation, though, and they were Stage II.
The second opinion colorectal surgeon I had found is in NH...He sounds wonderful from what I've read. Truly, though, I fear now that no doctor will be inclined or able to sort this mess out.
-
PainInTheAss
- Posts: 678
- Joined: Tue Jul 02, 2013 3:08 am
Re: Our nightmare
Yep, I was in the hospital for five days with a whole team of doctors who didn't seem to know what caused my rectovaginal fistula. I was even told, "congratulations! You don't have a tumor!" They discharged me wanting to wait 6 weeks to see if it would heal on its own. I'm like wtf?
One of the doctors recommended that I see a colorectal surgeon. I saw her right away once I was discharged to get the referral and saw him a week later. He figured out what was wrong in five minutes (my "hemorrhoids" were actually a mass).
It's not unusual for doctors with different specialties who only run into things here and there to not recognize symptoms of something that a specialist who sees this on a daily basis can guess right away. Then the right tests are ordered and you have answers instead of "wtf?" questions.
One of the doctors recommended that I see a colorectal surgeon. I saw her right away once I was discharged to get the referral and saw him a week later. He figured out what was wrong in five minutes (my "hemorrhoids" were actually a mass).
It's not unusual for doctors with different specialties who only run into things here and there to not recognize symptoms of something that a specialist who sees this on a daily basis can guess right away. Then the right tests are ordered and you have answers instead of "wtf?" questions.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation
Re: Our nightmare
Have you checked out the Lombardi Cancer Center at Georgetown? I was told that a doctor there, Dr. John Marshall is a great oncologist who specializes in Colorectal cancer. I have asked for recommendations from in your area on the Colontown Facebook group and will let you know when I hear of more.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16
Re: Our nightmare
Also recommended by people who have been to these centers, Virginia Cancer Specialists for oncology and Fairfax Colon and Rectal for surgery.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16
Re: Our nightmare
I will look them up right away, lauragb! Thanks so very much!!
Re: Our nightmare
Oh my gosh. How frustrating this must be for you. I am angry just reading this. Hopefully you can find a doctor that can give you the answers and treatment plan that you deserve.
Vicki
DH Dx 1/2012 @ age 52
stage IV CC
transverse colon,omentum, cecum,liver,lungs,L5
9 rounds of Folfox, Avastin,
5FU/Leucovorin/Avastin
radiation tx to L5 and hips
Folfiri/Zaltrap
12/13/13 Folfox/Avastin
1/4/2014 passed away @ Hospice House- age 54
DH Dx 1/2012 @ age 52
stage IV CC
transverse colon,omentum, cecum,liver,lungs,L5
9 rounds of Folfox, Avastin,
5FU/Leucovorin/Avastin
radiation tx to L5 and hips
Folfiri/Zaltrap
12/13/13 Folfox/Avastin
1/4/2014 passed away @ Hospice House- age 54
-
bitchslapped
- Posts: 1538
- Joined: Tue Sep 09, 2014 3:23 pm
- Location: PNW/USA
Re: Our nightmare
This sounds like something straight out of Abbot & Costello's, Who's On First". Your mom will know who that is. It's on youtube . Sounds like she's on an HMO supplemental insurance & I won't even go there. Try to keep your anxiety from your mother as best as you can. Vent on here or to friends...or both. She has enough to deal with & so do you, but her job is to heal; yours is to worry & handle this mess for her. Yes, she needs to be informed & give you permission regarding her treatment & doctors. The stress, frayed nerves will sap your reserves in your quest to find effective treatment for your mother & needs to be funneled in a direction that will pay dividends so to speak. She is lucky to have you as it will take the passion, the fire in your belly to be her advocate in navigating this complex medical system.
It looks so convoluted from your writings that, for me, I would have to draw an outline as "cliffs notes" for quick reference for meeting w/dr's. & asking good questions. For example:
I. Symptoms
A.
B.
II. Procedures
A. xxxx
1. outcome
1a. x, y, z
B. xxxxxxxxx & so on.
I presented a similar outline @ one of my husband's appts w/his last gastroenterologist (tops in our area) outlining symptoms, concerns etc. in order of priority. He asked if he could keep it.
This kind of nonsense should never happen. Good luck.
bs
It looks so convoluted from your writings that, for me, I would have to draw an outline as "cliffs notes" for quick reference for meeting w/dr's. & asking good questions. For example:
I. Symptoms
A.
B.
II. Procedures
A. xxxx
1. outcome
1a. x, y, z
B. xxxxxxxxx & so on.
I presented a similar outline @ one of my husband's appts w/his last gastroenterologist (tops in our area) outlining symptoms, concerns etc. in order of priority. He asked if he could keep it.
This kind of nonsense should never happen. Good luck.
bs
Last edited by bitchslapped on Wed Sep 17, 2014 9:13 pm, edited 1 time in total.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia
Re: Our nightmare
Just wanted to update everyone here on our situation. On Monday, just as I was looking into additional options, other oncologists, surgeons, etc. anyone who can help us, once again, my dear Mother developed excruciating pain in the toes on her right foot. We rushed to the ER, where I had to once again recount the saga previously described. She was somewhat dehydrated and while looking for the cause of the right foot pain with an ultrasound, they discovered a DVT in her left leg, so we were admitted to the hospital again. 
After explaining everything to the hospitalist, he said he would ask for an oncology consult and that we should bring in the scan from the August, since the radiologist here in March should have seen a mass that size...enlarging. Her feet were ice cold yesterday and they said they couldn't find a pulse in her right foot, so she had no blood flow!!!! Apparently, the arteries in her right foot are blocked (which is odd since that kind of pain doesn't start so acutely), so they consulted a vascular surgeon. He called yesterday and said that there was some blood flow to her foot, but it was minimal. They couldn't do a surgery to bypass an artery though, because she has Stage IV colon cancer and her life is limited, he said, as well as the fact that she hasn't been ambulatory. He came by this morning and we discussed our experiences, doubts, and conflicting information, and he said that our questions were logical. But we had a few options...blood thinners to prevent additional blockage, clot busting medications administered directly to the arteries, or AMPUTATION!! He ordered a scan to find out exactly where the blockages are...and my Mother said that he should go ahead and consult interventional radiology about the clot busting procedure. He said that there was a risk involved of bleeding elsewhere, in the brain and in her liver (because of the "metastases"). So I guess he didn't think the benefit worth the risk, because of the cancer diagnosis...which as I've detailed above has not really been properly staged even. This really doesn't fit any of the norms that I've come across, and as you can see, doctors are making serious decisions based on it.
Later, the interventional radiologist came by and he said that it might be spasms that are causing her pain and that warming the foot might widen the arteries and restore blood flow. Oh God, I hope so.
Also, an oncologist came by, listened to some of our saga, said that his role would only be limited here...didn't even review the latest scans, just read the radiologist's report of a pelvic mass that had enlarged since last October and said that really there was nothing they could do because she doesn't walk, the results of the first "intervention", and he mentioned her kidney stones. I didn't know that kidney stones could prevent someone from receiving treatment for cancer??????
He also said that her muscles are atrophied...her muscles are much better than last year, following her fluid overload and gaining over 70 pounds of fluid after her operation!!! He said no one would operate on her.
On a bright note, when I mentioned the enlarged lymph node of .9 cm the radiologist noted in the pelvic area, he said that's not enlarged.
My sweet, darling Mother said: "Doctor, please help me", and he said something like "we'll see what we can do". I said that there must be some way to get her get her well enough for treatment, and they need to let us know what to do. They just keep saying that there would be no benefit to any treatment. This is unbelievable. I've never heard of anything like this. If you say that someone is not treatable in their condition, shouldn't you do something to improve that condition? Even kidney stones don't need to be permanent.
Oh, and they say that the cancer caused her blood clots because it causes the blood to be more coagulant. But her clotting factor test was normal, and now that they were giving her blood thinners, they said that her blood was too thin, so they are reducing the dosage.
I'm just a mess. I wake up frightened every single day. I can't believe how long this has all gone on. Please everyone, pray for us!! God bless you all!!
After explaining everything to the hospitalist, he said he would ask for an oncology consult and that we should bring in the scan from the August, since the radiologist here in March should have seen a mass that size...enlarging. Her feet were ice cold yesterday and they said they couldn't find a pulse in her right foot, so she had no blood flow!!!! Apparently, the arteries in her right foot are blocked (which is odd since that kind of pain doesn't start so acutely), so they consulted a vascular surgeon. He called yesterday and said that there was some blood flow to her foot, but it was minimal. They couldn't do a surgery to bypass an artery though, because she has Stage IV colon cancer and her life is limited, he said, as well as the fact that she hasn't been ambulatory. He came by this morning and we discussed our experiences, doubts, and conflicting information, and he said that our questions were logical. But we had a few options...blood thinners to prevent additional blockage, clot busting medications administered directly to the arteries, or AMPUTATION!! He ordered a scan to find out exactly where the blockages are...and my Mother said that he should go ahead and consult interventional radiology about the clot busting procedure. He said that there was a risk involved of bleeding elsewhere, in the brain and in her liver (because of the "metastases"). So I guess he didn't think the benefit worth the risk, because of the cancer diagnosis...which as I've detailed above has not really been properly staged even. This really doesn't fit any of the norms that I've come across, and as you can see, doctors are making serious decisions based on it.
Later, the interventional radiologist came by and he said that it might be spasms that are causing her pain and that warming the foot might widen the arteries and restore blood flow. Oh God, I hope so.
Also, an oncologist came by, listened to some of our saga, said that his role would only be limited here...didn't even review the latest scans, just read the radiologist's report of a pelvic mass that had enlarged since last October and said that really there was nothing they could do because she doesn't walk, the results of the first "intervention", and he mentioned her kidney stones. I didn't know that kidney stones could prevent someone from receiving treatment for cancer??????
He also said that her muscles are atrophied...her muscles are much better than last year, following her fluid overload and gaining over 70 pounds of fluid after her operation!!! He said no one would operate on her.
On a bright note, when I mentioned the enlarged lymph node of .9 cm the radiologist noted in the pelvic area, he said that's not enlarged.
My sweet, darling Mother said: "Doctor, please help me", and he said something like "we'll see what we can do". I said that there must be some way to get her get her well enough for treatment, and they need to let us know what to do. They just keep saying that there would be no benefit to any treatment. This is unbelievable. I've never heard of anything like this. If you say that someone is not treatable in their condition, shouldn't you do something to improve that condition? Even kidney stones don't need to be permanent.
Oh, and they say that the cancer caused her blood clots because it causes the blood to be more coagulant. But her clotting factor test was normal, and now that they were giving her blood thinners, they said that her blood was too thin, so they are reducing the dosage.
I'm just a mess. I wake up frightened every single day. I can't believe how long this has all gone on. Please everyone, pray for us!! God bless you all!!
-
bitchslapped
- Posts: 1538
- Joined: Tue Sep 09, 2014 3:23 pm
- Location: PNW/USA
Re: Our nightmare
Anticoagulants need to be adjusted based on prothrombin time test results. Many factors affect the blood i.e., vitamin K (in greens), exercise, altitude changes, stress. Consistency is advised in daily habits, though difficult @ times to do this. For instance, if one eats green veggies regularly, then stops or skips several days...or never exercises, then decides to go all the way out to the end of the driveway to pick up the mail...or heads to the mountains for a week. A new drug is on the market since warfarin that helps to better regulate the coagulation factors in the blood.
I think that you are so scared & feel so jacked around that you don't trust even when the information is valid. It may be time to get with your mother's primary care physician; if you don't have one, I think she needs one to help coordinate & make sense of these issues. Medicare used to require a PCP; probably still does. I would look for a geriatric PCP. One of the first things I did when I took over the care of my mother was to get the best geriatric physician I could find (then made her mine too). In cancer treatment, yes the PCP fades into the background. In your mother's case, the chair-side manner, coordination of care & the training to communicate with patients in a manner they can understand may prove beneficial, i.e., kidney stones, etc.
If you truly believe there is a lack of continuity/follow through & competency in patient care for your mother, I'd head straight to a meeting with the head administrator. I'm talking the CEO of the hospital & take somebody with me. At the very least, get with the Social Services Dept of the hospital who may help you resolve some of this mess internally. Basically at this point, you don't trust anyone @ either hospital & probably won't from here on out. I'm just so sorry for you guys.
Best to your mom & you
bs
I think that you are so scared & feel so jacked around that you don't trust even when the information is valid. It may be time to get with your mother's primary care physician; if you don't have one, I think she needs one to help coordinate & make sense of these issues. Medicare used to require a PCP; probably still does. I would look for a geriatric PCP. One of the first things I did when I took over the care of my mother was to get the best geriatric physician I could find (then made her mine too). In cancer treatment, yes the PCP fades into the background. In your mother's case, the chair-side manner, coordination of care & the training to communicate with patients in a manner they can understand may prove beneficial, i.e., kidney stones, etc.
If you truly believe there is a lack of continuity/follow through & competency in patient care for your mother, I'd head straight to a meeting with the head administrator. I'm talking the CEO of the hospital & take somebody with me. At the very least, get with the Social Services Dept of the hospital who may help you resolve some of this mess internally. Basically at this point, you don't trust anyone @ either hospital & probably won't from here on out. I'm just so sorry for you guys.
Best to your mom & you
bs
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia
Re: Our nightmare
I can't believe I have to write this, but my beloved Mother passed away on Thursday and the cause wasn't adenocarcinoma, but septic shock! I still can't believe this...at the end, she had them stop her blood pressure medications, she was found to have capacity to make her decisions, and it didn't matter what I thought. She was so demoralized...I am in shock. Now I am all alone.
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