Deja vu all over again...

Chrisswife
Chrisswife Member Posts: 50
edited March 2014 in Colorectal Cancer #1
Hello all. A few of you old timers may remember me from my husband Chris's rectal ca diagnosis in the spring of '03. Stage II at that time, they beat him up with chemo and radiation and follow up surgery that left him with a permanent colostomy but a promising outlook for an eventual cure. All follow up scans, bloodword and scopes have remained clean and he has a routine appt scheduled with his oncologist on 7/19.
Cut to last week - he had been experiencing severe back pain for the last 3 months and yoga, massage, and chiropractic appts weren't working. The pain spread from his low back to his left leg where he has been experiencing pain, numbness, and loss of strength. He finally went to a medical dr who ordered an immediate MRI which confirmed the presence of a large tumor in his sacrum (pelvic area). The oncologist told us that surgery is not an option because of the location of the tumor and the proximity of the nerve endings in the area. The only hope that she offered is that if it isn't a recurrence of rectal cancer Chris may have a fighting chance, but that a recurrence would be stage IIII.
That was the good news. The radiation oncologist later told us that the tumor is actually eating away at the bone and displacing it altogher and that radiation isn't an option because they have heavily radiated the area already and further radiation would destroy his colon.
My take is from the radiation onc's perspective, it doesn't matter what the origin is, Chris is stage IIII either way.
He's still in the staging process now (this all went down last Friday) and will have a CT scan today and biopsy tomorrow. The full results will be to his oncologist hopefully by Friday but maybe not until Monday next week.
This is scary stuff folks and an entirely different ball game than stage II was 3 years ago. Does anyone have any experence with this type of beast or know what Chris's treatment options may be? Thanks in advance.
BTW - Just for a bit of added fun, Chris and I actually separated last fall, so now I'm trying to figure out what my roll will be in the fight this time, as well as how to help our 8 year old daughter through it. Any advice is very helpful, thanks so much.
Misha

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hi Misha,

    I am so sorry for this sad news. I can not help you with treatment options. Hopefully you will get these answers from other people here.

    On the emotional side: I think that in light of these events maybe you could reconcile your differences with Chris and move back again so that you could be with him through this as well as your daughter. I don't know what happened between you but when the trouble like this strikes, it is the best to put all other issues aside and just be there for him. He needs you now. I think that you need to help him through this. And it would also help your daughter - she will see that you are one team again and are fighting together. This may give her an encouragement. Also, may God forbid this, but you don't know what to expect and how long time you have left with him and your daughter with him, so use the time wisely. It might be a very good idea for you to be together again. Listen to your heart and see what is there.

    My thoughts and prayers go to you and Chris and your daughter.

    Please do let us know what happens.

    God Bless, Eleonora
  • vinny3
    vinny3 Member Posts: 928 Member
    #3
    I didn't see your initial postings but am sorry to hear the news. I too am Stage 2 by my oncologist's reckoning but possibly Stage 3. Just started Folfox chemo. Did your husband have chemo with 5-FU and radiation at the same time first and then the surgery? Did he have any chemo then after the surgery? After my initial chemoradiation I had a simple excision and looked clear but 8 months later came back with a recurrance and now also have a permanent colostomy. An oncologist I saw for another opinion says he would have given me chemo after my first surgery.
    Either way it is very frightening and I expect he will get some type of chemo. It may be that it will be a different type of tumor which would be better than if it is still the rectal ca. I will be praying for him and for you.

    ****
  • mwomack
    mwomack Member Posts: 78
    #4
    My husband was Stage IIIC and just had surgery and finished 7 weeks of radiation for a recurrent pre-sacral mass. I believe this is in the same vicinity as the sacrum.

    My first advice is to get a 2nd or 3rd surgical opinion. We were told by the onc. that he did not think they could operate because this area is full of nerve roots and blood vessels and would be offering radiation. He did call our surgeon, and I took him the actual disk of the scans so he could review the scans before our consult with him. He studied them thoroughly, and he told us that he was willing to go in laporascopically and look to see if he could get to the mass. It didn't sound too promising, but turned out wonderfully as he had very little scar tissues and he was able to even get the mass laporascopically. He told us that he really could not tell from the scans whether it is operable or not.

    I really don't know if this is an option because of previous radiation, but you might also consult a surgeon/facility in which interoperative radiation could be done on just the spot. I really wanted my husband to go to a facility that offered this but he would not go.

    Don't take the first NO, make them convince you that it is not operable. I am so thankful that our surgeon is a young, agressive surgeon that had no problems with tackling this "difficult" surgery.

    In hindsight, my husband had some lower back pain especially when standing or walking. He has started experiencing it again (lower back and upper thighs), but I honestly believe it could be coming from the damage that the radiation might have done. 7 weeks and 1 day of radiation is quite a lot. At the end they also "zoned" into the prescral space where the tumor was.

    You and he will have to decide what your role is, but no doubt you have a some type of role with a daughter involved.

    Best of luck,

    MA
  • spongebob
    spongebob Member Posts: 2,565 Member
    #5
    Misha -

    Welcome back (I guess... what a bummer way to be back in touch). I am so sorry to hear about Chris' situation. One of my very good friends, another Coast Guard guy known as Sea Detail here - had the exact same issue. There are a number of experimental chemos out there that they might use to treat Chris' recurrence. Don't allow him to lose hope.

    Regarding your marital situation; as someone who was served divorce papers contemporaneous with his cancer diagnosis and didn't have anyone during chemo, etc. I would urge you to try to look past your differences with Chris for now. He needs all of the support he can get right now and the added stress of marital discord can be devistating. I am not saying that your should act like everything is peachy-keen - you can certainly define your own space and be firm that you are standing by him as a friend (if you are, in fact, still friends - even just kind of) and to help your daughter get through this period. He will appreciate it and your daughter will see mom taking the moral high road and being a wonderful, supportive human being.

    Just some thoughts. As I recall you guys were in my hometown of Indianapolis? Is that right?

    Keeping you all in my prayers.

    - SpongeBob
  • Chrisswife
    Chrisswife Member Posts: 50
    #6
    mwomack said:

    My husband was Stage IIIC and just had surgery and finished 7 weeks of radiation for a recurrent pre-sacral mass. I believe this is in the same vicinity as the sacrum.

    My first advice is to get a 2nd or 3rd surgical opinion. We were told by the onc. that he did not think they could operate because this area is full of nerve roots and blood vessels and would be offering radiation. He did call our surgeon, and I took him the actual disk of the scans so he could review the scans before our consult with him. He studied them thoroughly, and he told us that he was willing to go in laporascopically and look to see if he could get to the mass. It didn't sound too promising, but turned out wonderfully as he had very little scar tissues and he was able to even get the mass laporascopically. He told us that he really could not tell from the scans whether it is operable or not.

    I really don't know if this is an option because of previous radiation, but you might also consult a surgeon/facility in which interoperative radiation could be done on just the spot. I really wanted my husband to go to a facility that offered this but he would not go.

    Don't take the first NO, make them convince you that it is not operable. I am so thankful that our surgeon is a young, agressive surgeon that had no problems with tackling this "difficult" surgery.

    In hindsight, my husband had some lower back pain especially when standing or walking. He has started experiencing it again (lower back and upper thighs), but I honestly believe it could be coming from the damage that the radiation might have done. 7 weeks and 1 day of radiation is quite a lot. At the end they also "zoned" into the prescral space where the tumor was.

    You and he will have to decide what your role is, but no doubt you have a some type of role with a daughter involved.

    Best of luck,

    MA

    Thanks for the information MA. The radiation onc did mention that there is one hospital in Seattle that has a robotic radiation machine that can pinpoint high powered radiation in a very specific location although he said that that would be "down the road" which makes me believe that it would be more to help with the inevitable neurological effects rather than as an ongoing treatment regimen.
    Your husbands situation has seemingly similar characteristics as Chris's. Was the mass located on the bone itself or in the tissue surrounding it?
    We haven't had a surgical consult yet, I was surprised to be told by an oncologist that surgery wasn't an option - we will obviously continue to seek opinions. The news just continues to get more grim with each appt which is what is so disturbing.
    Again, thanks for your reply.
    Misha
  • Chrisswife
    Chrisswife Member Posts: 50
    #7
    spongebob said:

    Misha -

    Welcome back (I guess... what a bummer way to be back in touch). I am so sorry to hear about Chris' situation. One of my very good friends, another Coast Guard guy known as Sea Detail here - had the exact same issue. There are a number of experimental chemos out there that they might use to treat Chris' recurrence. Don't allow him to lose hope.

    Regarding your marital situation; as someone who was served divorce papers contemporaneous with his cancer diagnosis and didn't have anyone during chemo, etc. I would urge you to try to look past your differences with Chris for now. He needs all of the support he can get right now and the added stress of marital discord can be devistating. I am not saying that your should act like everything is peachy-keen - you can certainly define your own space and be firm that you are standing by him as a friend (if you are, in fact, still friends - even just kind of) and to help your daughter get through this period. He will appreciate it and your daughter will see mom taking the moral high road and being a wonderful, supportive human being.

    Just some thoughts. As I recall you guys were in my hometown of Indianapolis? Is that right?

    Keeping you all in my prayers.

    - SpongeBob

    Hey SB - Glad to hear from you and that your still active on this board!
    The tough part with Chris is that it was strictly MY decision to end the marriage, I left him and it was very devastating to us both but to Chris in particular.
    I've more or less decided that once things get bad and he can't work anymore, I will take him in. I worry about his emotional state with me or without me because although I can't bear the thought of him going through this alone - it's also very difficlut for him to be with me. Rather like constantly ripping off a scab once it's starting to heal.
    I'm making calls today to get all 3 of us in family counseling, our daughter is scared and angry, same as her parents.
    It is a bummer way to get back in touch but the folks on this board are such a wonderful source of support/humor/and information, I'm just glad to have you guys. Thanks everyone for the posts and comforting words.
    Misha

    PS to SB - Chris, Claire and I hail from the sunny Pacific Northwest. ;)
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #8
    Chrisswife said:

    Hey SB - Glad to hear from you and that your still active on this board!
    The tough part with Chris is that it was strictly MY decision to end the marriage, I left him and it was very devastating to us both but to Chris in particular.
    I've more or less decided that once things get bad and he can't work anymore, I will take him in. I worry about his emotional state with me or without me because although I can't bear the thought of him going through this alone - it's also very difficlut for him to be with me. Rather like constantly ripping off a scab once it's starting to heal.
    I'm making calls today to get all 3 of us in family counseling, our daughter is scared and angry, same as her parents.
    It is a bummer way to get back in touch but the folks on this board are such a wonderful source of support/humor/and information, I'm just glad to have you guys. Thanks everyone for the posts and comforting words.
    Misha

    PS to SB - Chris, Claire and I hail from the sunny Pacific Northwest. ;)

    Misha,
    Family counseling might be a very good idea. See what you can do to reconcile without further suffering.

    Good Luck.
    Eleonora
  • taraHK
    taraHK Member Posts: 1,952 Member
    #9
    Hi Misha,
    I am so sorry to learn this news. I sure know what you mean by deja vu. I was all clear for 2 years after my treatment for rectal cancer. Learning about the recurrence (in my case lung met) was like being punched in the stomach. A horrible feeling. But, after catching my breath, I just climbed back on that crazy merry-go-round. Which is what it sounds like you are doing. I hope your meeting with the surgeon goes well. It sounds like you gathering information and exploring various options, which is great. Sending best wishes your way.
  • Kanort
    Kanort Member Posts: 1,272 Member
    #10
    Hi Misha,

    I am so sorry of Chris' recent reports. What a difficult time for all three of you. I will keep each of you in my heart and prayers.

    Hugs,

    Kay
  • KathiM
    KathiM Member Posts: 8,028 Member
    #11
    Oh, Misha, what an awful place for all of you...
    I was divorced for a while before some pretty heavy stuff came down with my ex. I treated him as a concerned friend would...you know, regardless of how it ended, there was a time when you guys were close enough to have produced a daughter. BUT, I made it VERY CLEAR that it was NOT a re-opening...that the two people that were husband and wife no longer exist.
    I think the idea of family counseling is an excellent one...just remember that this man IS your lovely daughter's dad....and she needs positive memories, if it comes to that.
    BUT I also agree to a 2nd, 3rd, 4th opinion...you need to make sure all options are explored...
    Finally, I really think you need to keep a little distance from him...for your OWN mental health...PLEASE consider hospice if it comes to it...DO NOT try to tackle this by yourself...
    Hugs to another with REAL wings!
    Kathi
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #12
    hi misha,

    Of course I remember you.

    I am so sorry you all are going through this.

    If you remember me then you know what I am about to say:

    Try juicing him and putting him on a plant based diet full of cancer healing and tumor shrinking supplements and herbs. Why not. What do you have to lose??

    Have you heard about scouty? She was Stage 4 rectal and she started juicing and changed her diet and her tumor FELL OUT!!

    A woman in my previous homeschool group has a son who had Stage 4 cancer (attached to many major organs) and was sent home to die (he was 2) and she started juicing him and giving him supplements (right in a G tube) and he's alive today!!! the tumors died and the tendrils that were wrapped around his organs retracted.

    These are not isolated cases.....there are many many out there. Just do some research on your own.

    You may not save your marriage (though that would be nice), but you sure could make a stab at saving Chris's life! REgardless of what the radiologists are telling you there ARE alternatives to what Western med has to offer.

    Best of luck.

    peace, emily who has not changed her tune in 5 years! :-)
  • mwomack
    mwomack Member Posts: 78
    #13
    Chrisswife said:

    Thanks for the information MA. The radiation onc did mention that there is one hospital in Seattle that has a robotic radiation machine that can pinpoint high powered radiation in a very specific location although he said that that would be "down the road" which makes me believe that it would be more to help with the inevitable neurological effects rather than as an ongoing treatment regimen.
    Your husbands situation has seemingly similar characteristics as Chris's. Was the mass located on the bone itself or in the tissue surrounding it?
    We haven't had a surgical consult yet, I was surprised to be told by an oncologist that surgery wasn't an option - we will obviously continue to seek opinions. The news just continues to get more grim with each appt which is what is so disturbing.
    Again, thanks for your reply.
    Misha

    No, his was not in the bone. In my research it seems that I did read that they could take out a part of the tail bone (not positive about that). And once again, our surgeon told us that they really had to go in there and look that they couldn't tell enough from the scans. From the scans they could not even tell if the mass was above or below the anatomosis (reconnect point). If it was below the anatomosis he said that would be in no man's land. Well, it was in no man's land, and he was even able to get to it laporascopically.

    The medical onc. is a really good doctor - as the surgeon said about him he is the one that the smart doctors go to for advice - but he really did not know much about the surgery aspect or even the radiation. He referred him to a wonderful radiation onc., but he had told us a "light dose" of radiation maybe 4 weeks. The radiation onc. said that we had to remember that this was a M1 recurrence and also the margins were not clear so we had to treat it very aggressively.

    Find a good, aggressive surgeon. I know what you mean about the appointments, even the surgeon has to tell you all the "what ifs". He really did not give us a lot of hope but he always clarified that with he just didn't know til he could go in there and look. But, he walked into my room after surgery with a big smile on his face saying "he is absolutely amazing - he has no scar tissue." This was our little miracle in this battle. The surgeon was so pleasantly surprised by the surgery that I heard him tell 4 people at different times that he was "absolutely amazing." I guess surgeons need some good news every once in a while too because he was downright giddy.
  • themis01
    themis01 Member Posts: 167
    #14
    The only advice I can offer is that you should always get antoher opinion especially when a doctor says surgery is not an option. This may turn out to be true but you need to hear that from more than one person.

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