Sacrectomy? Or not?

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LoraCF
Posts: 9
Joined: Sun Jan 15, 2017 10:58 pm

Sacrectomy? Or not?

Postby LoraCF » Thu Mar 02, 2017 3:49 pm

My partner had what everyone thought was a #C rectal tumour. He had the usual treatments: chemo and radiation pre-surgery, then surgery to remove the tumour, plus what was supposed to be a temporary illeostomy, then 6 months of chemo. He was declared NED at the end of February 2016. There was no lymph node involvement.

He complained of lower back pain for months afterwards and finally his surgeon set up a PET scan, which showed a single small tumour on the sacrum.

After an inexcusable wait for some mysterious reason known only to the doctors on his team, it is now 5 months later and the tumour has doubled in size. The surgery we've been told about, a sacrectomy, sounds as though it would be life-destroying.

Has anyone here either had this surgery or known someone who's had it?

stu
Posts: 1612
Joined: Sat Aug 17, 2013 5:46 pm

Re: Sacrectomy? Or not?

Postby stu » Fri Mar 03, 2017 3:29 am

Hi ,
Welcome to the forum . I can't answer your question but wanted to bump this back up to the top so others might be able to help. That sounds really difficult for your partner. That was a very long time to wait and must be hard to understand.
I only read briefly about it but hopefully someone will have actual experience to reassure you but it sounds as though lots of physiotherapist is required right away.

Hope you get some info, but we are here to support you too,

Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

User avatar
dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Sacrectomy? Or not?

Postby dianetavegia » Fri Mar 03, 2017 3:43 pm

Lora, we had a member who had that done and before he had healed, a tumor had developed on the other side of the pelvic bone. The original surgery was very extreme.

I wish I could remember his username. I think his real name was Steve.

From a forum I used to be a member of, a man and his partner had posted on and off about his pain from a tumor in that area. He didn't have surgery and the pain was quite bad.

I'm so sorry for you and your partner. Why they didn't try radiation 5 months ago is beyond me. I cannot tell you how many times I've wondered why doctors did or didn't do something!

Wishing you both comfort during this time,
Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Sacrectomy? Or not?

Postby aja1121 » Fri Mar 03, 2017 5:20 pm

Hi Lora. My husband had a pelvic recurrence of his rectal tumor which was touching his sacrum. He also had very bad pain in his tailbone area. We were initially told the only treatment was a pelvic exenteration with sacrectomy (removal of rectum, anus, bladder, prostate, and sacrum). Hubby is early 40's and was very active before he got cancer (skateboarding, biking, etc) so he was not willing to undergo that procedure because they told us the recovery was very tough and he would likely have trouble with balance and walking afterward.

A second opinion (Mayo Clinic) offered surgery to remove the tumor, but we were warned the surgeons didn't know what they could do until they saw the inside of his pelvis with their own eyes. They did have him do 10 more sessions of radiation before surgery, which shrunk the tumor. Surgeons ended up removing his rectum, anus and the bulk of the tumor (it was touching the sacrum but not growing into the bone). They could not remove all the cancer from inside the pelvic bones, so the surgery was not curative. They warned us the cancer might regrow very quickly. That was a year ago. He has been on chemo since then. Scans show the remaining tumor is still there, but so far there has been very little growth.

A couple of things that helped my husband: Lyrica helped minimize the "shooting/sparking" nerve pain in his tailbone/lower back. Fentanyl patches worked the best in terms of reducing pain while allowing him to function without being too high. He started taking medical cannabis oil every night before his surgery, and he has continued to do that even now. It helps him relax and sleep; it also increases his appetite.

My thoughts are with you as you navigate through this. Let me know if you have any questions.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

Ratepo
Posts: 71
Joined: Thu Oct 10, 2013 1:56 am

Re: Sacrectomy? Or not?

Postby Ratepo » Mon Mar 06, 2017 10:15 am

I'm sorry to hear your experience. Be very, very, proactive is the one main thing I would advice. We did go for a 2nd opinion and considering what I read I would go for that in your case as well. Further QOL is at stake here as the pelvic area is full of nerves and organs. A sacretomy might impact walking ability so something to think good about. Depending on prospects and age perhaps removing the most cancer without removing the sacrum could be the best option.

My dad was diagnosed with rectal recurrance about May 2015. He had re-radiation and xeloda which made him end up in hospital and the only time thus far I thought he wouldn't make it. When he recovered he got the intended operation at October 2015, initially curative. However just as the husband of aja1121 had, they couldn't remove everything in the pelvic area. Although they were literally hammering at his tailbone/sacrum to remove the most part.

He recovered very well and as he couldn't be cured anymore we opted - as the surgeons suggested - for the wait-and-see approach. 1,5 year later it turns out there is a small met in his lung. Should be devastating however more important is that there is activity in the pelvic area. Although the CT-scan didn't show anything, the PET-scan showed that cancer was active in around pubis and sacrum. He doesn't feel anything though. So cancer growing around/into his bones, however no bone mets (think a important difference).

It's chemo for life now, avastin and xeloda at first. If it doesn't work (anymore) we might return to oxaliplatin again or skip to irinotecan, however atm my dad is not enthousiastic about the tougher regims. It's nice to read the story above that it has been more or less stable over a year now.

Wishing you all the best!
Father dx 10/12 rectal 4a
11/12 3 liver mets resected
01/13 colostomy
07/13 scan: 1 liver met, op. failed: multiple discovered, start xelox
12/13 mets shrink (kras mut.)
01/14 liver op new hospital: 2 mets removed others disappeared
05/14 & 09/14 NED
01/15 CEA rise to 5
05/15 local reccurence - rad + Xeloda
10/15 op. failed unremovable mets lower pelvis

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Sacrectomy? Or not?

Postby aja1121 » Mon Mar 06, 2017 10:39 am

Local recurrence of rectal cancer is so frustrating. It seems like there are potential solutions for liver mets, lung mets, etc. but there are very limited options available to treat cancer inside the pelvis.

Lora, when my husband's cancer recurred, his local colorectal surgeon commented he would not be able to get more radiation treatments because he had already received the "maximum lifetime dose" to his pelvis. The surgeons at Mayo Clinic explained that those maximum guidelines exist to prevent radiation from causing future cancers. They felt that in someone with an expected life span of less than five years (like my husband) it was worth the risk to re-irradiate the area, because it would shrink the tumor before surgery and help kill cancer cells in the area. They had him do 10 more sessions of radiation prior to surgery, and I suspect that has probably helped his cancer remain mostly stable. Just wanted to throw that out there, as I wasn't aware it was an option until we talked to Mayo.

Ratepo, my husband has also been on Xeloda/Avastin, he started at the end of November... scans next week to see how it's working.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

LoraCF
Posts: 9
Joined: Sun Jan 15, 2017 10:58 pm

Re: Sacrectomy? Or not?

Postby LoraCF » Thu Mar 09, 2017 12:51 am

Thank you all for your answers.

We had a meeting with the neurosurgeon on Friday, and quite frankly we are once again speechless with wonder at how little the BC Cancer doctors actually communicate with each other and with their patients.

Contrary to what we had been told by other doctors, the neurosurgeon told us that a complete sacrectomy is not warranted as the tumour is small and on the edge of the sacrum. He will simply remove the tumour, with a margin. This will only affect the nerves on one side of the sacrum, and these are already affected by the previous radiation and surgery, so no new problems. Comes with a one-in-five chance of cure, or thereabouts. Given how this has gone so far, we aren't even hoping for that.

The neurosurgeon also feels that more radiation would be an option; not the regular kind, but what is known as stereotactic -- a much more targeted radiation that can be used at such strengths that it can kill cancer. If the cancer came back after that, we could then have the surgery. In Ontario this would be an option almost certainly, but here in BC...not so much. Apparently we are more conservative here, radiation-wise. And our health system being what it is, no we can't go to Toronto; different provincial health system. Anyway, we meet with the radiation person tomorrow to plead our case. As this is likely terminal, it seems odd that there would be such a reluctance.

However, we're now feeling a lot better about the whole scenario. There might even be a choice of treatment options, which would give him a small sense of control over the situation.

LoraCF
Posts: 9
Joined: Sun Jan 15, 2017 10:58 pm

Re: Sacrectomy? Or not?

Postby LoraCF » Thu Mar 09, 2017 12:08 pm

Don't know what happened to my long reply of last night...lost somewhere in cyberspace, maybe.

Thank you to all who responded.

The neurosurgeon advised that a sacrectomy is not required; the tumour is small and on one side and can be removed with a safe margin. This obviously means fewer complications.

We might also be able to access a radiation called stereotactic, which is more targeted and thus causes less damage to surrounding tissue. It is more likely to be offered in Toronto than here, but we get to plead our case today. The neurosurgeon told us that if we go ahead with radiation and the cancer returns, we can still have the surgery, so that's a decent option.

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Sacrectomy? Or not?

Postby aja1121 » Thu Mar 09, 2017 1:35 pm

This sounds like spectacular news!
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: Sacrectomy? Or not?

Postby PainInTheAss » Thu Mar 09, 2017 3:26 pm

LoraCF wrote:My partner had what everyone thought was a #C rectal tumour. He had the usual treatments: chemo and radiation pre-surgery, then surgery to remove the tumour, plus what was supposed to be a temporary illeostomy, then 6 months of chemo. He was declared NED at the end of February 2016. There was no lymph node involvement.

He complained of lower back pain for months afterwards and finally his surgeon set up a PET scan, which showed a single small tumour on the sacrum.

After an inexcusable wait for some mysterious reason known only to the doctors on his team, it is now 5 months later and the tumour has doubled in size. The surgery we've been told about, a sacrectomy, sounds as though it would be life-destroying.

Has anyone here either had this surgery or known someone who's had it?


On my original PET, I had a lymph node light up near the sacrum. I was told that this was out of the scope of the APR surgery, and we would have to check it after treatment. I was told this area has so many nerve endings, there is a great risk of being paralyzed. It's pretty scary stuff. After treatment, we couldn't get insurance to approve a PET to check it, so I was left in limbo for almost a year until I suggested we check it with an MRI (that I had read about on this board). While I was waiting, I asked what my options were if the lymph node was cancerous since surgery in that area is so risky. One option was Gamma Knife, which I had read about so that was very encouraging. My MRI was clear.

During that time, another poster on here had 2 lymph nodes light up in an area in the pelvis near an artery. Their surgeon wouldn't touch it. They had to talk to many different surgeons before they could find one willing to tackle it. They finally found one, and the cancerous lymph nodes were successfully removed.p with no damage.

The delay may be from the lack of being able to find a surgeon willing to do the surgery. But you and your partner should not leave your fate in someone else's hands. Get 10 additional opinions, or 20, if you need to until you find the answer your are looking for. Is Gamma knife an option? Not all cancer centers or Oncologists have Gamma knife, but it is very effective in delicate areas like the brain. I'm sure having a life period trumps even a difficult life with paralysis. Mwny surgeons won't take the risk, but I would have if that was my only option to live and would have kept looking on my own if my oncologist told me he couldn't find one willing to do it. Start making phone calls and setting up your own consultations. Go to every major cancer center in your area, even if you have to go out of town. Find out what kind of surgeon does that surgery, and search high and low for one who has already done this successfully. You literally have to take your life in your own hands.

Also, you may have better luck with a younger surgeon trained in robotics. Older surgeons can be like dogs who can't learn new tricks sometimes.

I have never read any posters on this board who have had the surgery. Like I said, you should be able to find a surgeon who has done it, and can ask them more about it, especially the best case scenarios. I would talk to several oncologists also and see if there are other options like Gamma knife.
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

LoraCF
Posts: 9
Joined: Sun Jan 15, 2017 10:58 pm

Re: Sacrectomy? Or not?

Postby LoraCF » Thu Mar 09, 2017 4:18 pm

PainInTheAss,

The neurosurgeon we met is totally on board with the surgery, thank goodness, and feels that the tumour is small enough and low enough on the sacrum that there wouldn't be any bladder or mobility issues. But we just got news today that the stereotactic radiation is also an option. Without treatment he might live for another two years anyway, but the pain management is the real issue. If we can get that under control through treatment and have a decent quality of life for a while, we'd be satisfied. Not happy, but satisfied.

LoraCF
Posts: 9
Joined: Sun Jan 15, 2017 10:58 pm

Re: Sacrectomy? Or not?

Postby LoraCF » Sun Jul 23, 2017 10:07 pm

Well, after more discussions, he went with a course of stereotactic radiation instead of the surgery. It's had some effect on the tumour, but nobody can tell how much time it will buy. Of course, the treatment, be it radiation or surgery, should have happened five or six months earlier than it did but people kept forgetting about us.

Honestly, we'd heard that British Columbia had world class cancer treatment, but in our experience the left hand and the right don't communicate. Furthermore, the administrative ineptitude we've seen is downright scary.

I think the delay we experienced between discovery of this tumour and the treatment -- a total of almost 7 months -- will hasten his death because we went from a small tumour to a larger and far more painful one. If he'd had the treatment months earlier, the tumour would be a lot smaller and his pain levels would be far less. No matter how long he lives now, he will always be on heavy pain medication. I can't forgive that.

Sorry for complaining but we've been terribly let down.


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