Latest update from IV-ville
I haven't posted an update lately because I don't have much to tell, but am in so much pain right now that I decided to vent anyway. Thank you for bearing with me. My lower back pain was increasing alarmingly, but I attributed it to my 'usual' sciatica. Boy was I wrong. About 3 weeks ago my right thigh went numb and walking or standing for any period of time because excruciating; a lumbar MRI revealed that the new pelvic tumor is pressing on my sciatic nerve and growing hella fast: it went from 8 cm in early April to 14 cm two weeks ago. That certainly explains the pain. Unfortunately it's now WAY too big for another round of CyberKnife and surgical removal is the only option. The first surgeon (my original one, who I can't stand) refused to even consider operating as I could lose bowel function and leg function, and said...are you ready for this... I would "only gain a few more months". WTF kind of thing is that to say, especially to someone with a tumor that isn't even in an organ? Fortunately my wonderful new oncologist found another surgeon at the City of Hope, who had a different approach.
The orginal plan was to have more radiation to shrink the tumor prior to removal, but she vetoed that idea, saying radiation would make the tissues too brittle to work on. (It's worth noting that the new tumor is in a spot that's never been radiated, so it's untouched territory which is better for post-op healing). Instead, while I'm open on the table, she wants to do intraoperative radiotherapy (IORT). Apparently they shove your organs - bowel, etc. - out of harm's way, then scour the tumor bed and margins with high dose radiation. I'd never heard of such a thing but apparently people on the ovarian board have had it and the results are often good. She's hopeful - but not confident - that she'll be able to get all, or at least most, of the tumor but this adds a level of safety, She wants the head of surgical oncology to take the lead with her assistance, so we're waiting to see if he's willing and able to do so. I can't have this done fast enough; I've never, ever been in pain like this before and am starting to see how people just give up after awhile. Please forgive me for sounding melodramatic, because I know many of our sisters have it much worse than I do, but the Valium, Vicodin, Percocet, Tramadol, etc. etc. ain't really doing much. Dilaudid or a patch are next on the list, but I'm worried about depleting my body's resources before surgery and I can feel my spirits going downhill by the day.
As I said, I don't really have any new news but just wanted to vent. Thank you all for being there and letting me do so. Love you all, B
Comments
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Major Prayers aheaded your way
I’m sorry you’re in such pain. It clouds everything and it’s hard to see tomorrow. I hope they can find something to give you relief. I hate this cancer. It’s like a sneaky enemy. You never know where it can pop up. How soon can they do surgery?
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I’m so sorry that you are
I’m so sorry that you are going through this! I pray that the radiation will work for you. It sounds like you have a good team looking for the best options. You confirm what we all often fear in that is my new pain mor cancer or something else. Many prayers for you for pain releaf!
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Scary Stuff!
Oh Barb! This is not what any of us want for you. I remember all too well the unrelenting pain I had during chemo with severe neuropathy and couldn't imagine living with it forever and never even being able to sleep again. It was scary times and I'm praying really hard that this can be relieved for you somehow. We endure so much fighting this cancer, but having to suffer through intractable pain is everyone's greatest nightmare and fear. Sending prayers and hugs that this problem will get solved very soon! Pat
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Oh damn
I'm SO sorry you're experiencing such excruciating pain, derMaus. But relieved you've got a team now that you feel confident about and sounds like it has a sound plan. Good to get rid of a surgeon you hate -- dealing with him would take energy you need for more important things. Please keep us posted when you can. We're all pulling for you.
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I am so sorry you have so
I am so sorry you have so much pain. Your new surgeon sounds like she has a great plan and I hope it can all come together very quickly so you can have relief from that pain. Sending up prayers for you.
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Oh Bobbi, I am so sorry you
Oh Bobbi, I am so sorry you're going through this! (((Bobbi))) But at least you found a surgeon who has a plan to alleviate the pain and maybe provide an answer to stopping the growth. I wish there was something more I could do but offer you my good thoughts.
Love,
Eldri
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Der Maus - some thoughts
DerMaus,
I am sorry to hear about the pain you are going through. I'm sure it has
been very frustrating for you. I know you are working with a naturopath and are on metformin.My first thought as I read your post was that if cancer has continued to grow
in your body, you have not yet determined all the root causes that are
causing cancer to form, all the toxins in your body. Normal cells become
cancer cells when they try to survive in a toxic environment- that is when
they mutate in order to survive and can go on to form a tumor. Remember,
cancer cells are just normal cells not following their cellular instructions. So
you need to get them to behave.
Have you been monitoring your ferritin levels? Stored iron? It is a key driver
of cancer and cancer cells love iron. Women in menopause are at increased
risk of iron overload. It is often used as a cancer marker to evaluate the success
of your treatment. You probably need to start eliminating all possible risk factors
that could still be present. Also, standard cancer treament (chemo and radiation)
add more toxins to our body and are known to cause more cancer. It is well known
in the medical community. I personally believe in limited standard cancer treatment.I recommended a book previously on this site "Cancer is not a Disease, It's
a Survival Mechanism" by Andrease Moritz. I really think this book might be
helpful for you. It will give you a whole new perspective on cancer. It certainly
changed my perspective that cancer isn't out to kill us.
Also, if you are considering more surgery, it is very important to boost your
immune system prior to surgery, as surgery spreads cancer (I wish I had
known this before I had surgery). The best immune boosing supplements
are the medicinal mushrooms- Maitake D fraction, Coriolus PSK, Shitake and Chaga.
Surgery creates all the processes that fuel cancer- it compromises the immune
system (anesthesia), generates inflammation and removes all the natural barriers in
our body that protect us from cancer as they cut up our organs.I would be happy to provide you with the names of more specific supplements I use
that are known to be cancer killers. Many are known anti-inflammatories.Takingcontrol58
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DerMaus ... it sounds like
DerMaus ... it sounds like you're in good hands with this second surgeon. You do NOT need a surgeon around who thinks, "Oh, what's the use?" As far as I'm concerned, jerks like that guy are unfit to practice. If you want to fight this beast, your surgeon needs to show the same committment. Looks like your surgeon wants to attack this thing and while not sugar-coating, is taking a good positive attitude, but is placing your quality of life at the top of the list of concerns. Sounds like a keeper to me!
So go your surgeon and go you! Hope your pain subsides and the beast is finally gone.0 -
Venting required!
You are going through so much! That oncologist was rude! I agree with the others that it is a good thing you have a doctor who is more supportive. Oh how I wish I could make cancer dissipate off the face of this earth. No one really knows the pain and anxiety until they themselves have experienced what you are going through. Vent again so we know you are fighting this damned cancer! ((HUG))
Grace and peace...
Lori
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Sweet B - Thanks for posting!
Sweet B - Thanks for posting! What a nightmare for you. I'm so sorry and no words can ever be enough to express how badly I feel for you. I'm glad you found a caring, supportive and smart doctor to get you through this next hurdle. I know you will fight this and come out better. Please come back as often as you can to update us. You are and will continue to be in my thoughts and prayers.
Love and Hugs,
Cindi
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Thank You For Venting
I appreciate knowing the truth even if it's not pretty. I'm glad that you found a gyncological oncologist and surgeon you're comfortable with. I'm sorry that you are dealing with so much pain. I have been dealing with some lower urinary tract pain. I took over the counter AZO and have been eating a clove of crushed raw garlic each day. It seems to have helped. I go in for a CT scan soon, and will learn more after that. I hope that your doctors can do something that will help control your pain. Thinking of you fondly and wishing you the best, fellow IV-ville traveler.
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Doctors
Some people should never become doctors! There are always new strategies to try and some of them actually work. He has no right putting his out dated opinions out there. Glad you dumped him. I am constantly hearing survivor stories. You will be one of them.
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Dear DerMaus
I am so sorry that you are experiencing pain. Through so much pain you still managed to find someone who has the competence and vision to help you. The first oncologist's behavior is not acceptable at all. I am wishing that you come out of this surgery with a NED status. Is the new oncologist saving immunotherapy for maintenance after the surgery? I guess that would make sense.. to first lower the burden and then attacking whatever is left (if anything is left) with the immunotherapy. Please know that we are all thinking of you and wishing you the best.
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DerMaus
When I am feeling down, reading survivor stories helps me. I think I have read many of the survival stories on this site. When I ran out of stories, I looked around and found a website called Inspire. They dont have a lot of people who have uterine cancer but they have a big community for ovarian cancer. They have an annual survivors update around valentine's day (Something we should consider doing so that all the positive stories is in a single place). I love reading how even people who had multiple recurrences achieve complete remission. I thought it might help. Please stay positive. Sending much love!
https://www.inspire.com/groups/ovarian-cancer/discussion/annual-valentines-day-survivors-update/
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So sorry!
der Maus, I can only add my sincerest wishes that you find a way out of the pain and get some control of this tumor. I thought I've experienced 10 out of 10 pain, moaning in the ER for someone to please help me. Morphine gave me relief and then the fentanyl patch (combined with other drugs) until the radiation shrank the beast. I hope your team of surgeons can work with a palliation team to give you some relief for you to gather your wits and strength for what lies ahead. I am with you on the idea of cutting out the culprit, especially since no organs are affected. I hope your journey into pain control proceeds apace. Best wishes and have confidence in your decision. Oldbeauty
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So sorry to hear you are in
So sorry to hear you are in such pain, Bobbi. I can't believe the tumor is growing so quickly, so I pray that the surgical oncologist you mentioned will take your case and operate on you as soon as possible! I hate Fentanyl and its side effects, but if it's really painful, this may be the suggested way to go. Please know that I am dearly praying for you! I understand sometimes it gets so tiring and painful, that you just want to give up, but I'm praying you will stay strong.
Love,
Rebecca0 -
Know where you are
Know how you are feeling. Just had my 3 mo. check after the rads and cisplatin and dang if she did not find another bump on the wall, again! As you know, not what we want to hear. Because I am not very far out from the radiation, we are waiting 6 weeks to biopsy, but, if C - then surgery as am radiated to the limit . Told it is very close to rectum so surgery could have problems. Your posts always help all of us learn something. I am so sorry you have to be the first in line for some of this, and you have every right to vent and rant. Sometimes we just need to go out into the country and scream and shout and stomp. Like you, I have never had to deal with much pain and when it is constant, it weakens your spirit. And that doc needs to find a new line of work. Please stay as strong as you can and know we are all cheering and praying for you to get past this. I wish words had magical power and these words would send your pain away. Hoping for the best for us both and all the others on this board.
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You gave me words of
You gave me words of encouragement when I had to go for my first chemo. I'm so sorry that you are now having to go through this after everything you have been through. That surgeon sounds like a real jerk. Probably got an "F" in bedside manners.
I hope your new surgeon can get your scheduled for surgery as soon as possible to help you and that you can get pain relief.
You are in my prayers.
Sandra
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