Gynecologic Cancer Support Group: Women of S-Teal

Gynecologic Cancer Support Group: Women of S-Teal

Mon, Oct 9, 2023
5:30pm to 6:30pm ET

Description

Join us for candid conversations about living with gynecologic cancer. This support group is for people who are newly diagnosed, receiving treatment or in surveillance. All patients and their caregivers are welcome to attend.

Monthly meetings are held every 2nd Monday of each month from 5:30 p.m. – 6:30 p.m. ET (find your time zone)

Register on Zoom https://mchealth.zoom.us/meeting/register/tJUpcumqrjspG9fMELiP7SZzpF_vPDfkhNuz

Contact number for Oncology Social Work: 904-953-6831

Location

Online

Contact

Tanya Thomas, MSW, LCSW
Tanya Thomas, MSW, LCSW
Email: Thomas.tanya@mayo.edu
Phone: 904-953-1621

I had uterine cancer and had a hysterectomy on June 27 followed by four treatments of radiation ending August 21. Since radiation I have had bouts of loose stools. I take an immodium that usually holds for two days then a regular movement and few hours later loose sttools. Is this something common and what can help for how long can this continue?

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I've had the same issue my whole life. I've recently cut wheat out of my diet and it has made the problem 90% better. Just a thought.

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Hello rmann22434baisley,
I had a cervical issue last year and went through radiation and Chemo. Had loose stools for the longest time. The reason is that Chemo wipes out your normal bacterial flora that assists your digestive system and It takes time to rebuild it. You may want to try taking a probiotic that will help you regain flora. What has worked for me is Probiotic Pearls for women for vaginal and digestive health. I get them on Amazon.
Joybid

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I was just diagnosed papillary source uterine cancer after a total hysterectomy. I would appreciate hearing women’s experiences with this cancer. A six-cycle of Carbo/Taxol chemo was recommended.

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@joybid

Hello rmann22434baisley,
I had a cervical issue last year and went through radiation and Chemo. Had loose stools for the longest time. The reason is that Chemo wipes out your normal bacterial flora that assists your digestive system and It takes time to rebuild it. You may want to try taking a probiotic that will help you regain flora. What has worked for me is Probiotic Pearls for women for vaginal and digestive health. I get them on Amazon.
Joybid

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I’m sorry you’ve been struggling with this, @rmann22434baisley. This sounds miserably uncomfortable, can be anxiety-triggering and takes a lot of time and energy away from getting back to a “new normal” life. Changes in bowel function have been a part of my gyn onc post-surgical experience (surgery 2/23), even without chemo or radiation so far. I’ve had bouts of both constipation and loose stools with very short stretches of normal functioning.
Things that have helped for me:
-reassurance that this is not a new cancer symptom (checking with my GYN ONC team)
-working with an integrative oncologist (a naturopath with training in oncology) to sort out what causes my particular digestive changes,
-as @joybid suggested, fermented vegetables (or probiotics…I’ve done both in my life and now prefer the veggies, which are cheaper, just as effective for me, and can be cabbage, beets, carrots, etc. Some can be flavor boosted with fennel, ginger, carraway, etc). I eat 4-5 TBSP before breakfast each day). I hope, when time and energy become abundant, to learn how to make these for myself, so I don’t have to pay someone for my probiotics either way).
-fiber…I like psyllium husk, I began using first for loose stools, but which can either slow things down or smooth them out depending on how much water you drink with it…takes some playing with it to adjust, but feels much gentler for me
-pelvic PT to address changes in the nerves and smooth and striated muscle tissues of the pelvis which have been relocated when the uterus was removed…cuff of vaginal gets re-attached to ligaments toward the sacrum bone of the spine…lots of nerves there (understandably) that can get “upset when their neighbors and partners in functioning have been removed” as my pelvic PT tells me, and they can U/S and examine to see how you’ve been put back together and then do techniques to help those nerves and muscles wake up, calm down, coordinate with each other and function better (specific types of movement, pelvic massage a pelvic PT can do and neural glides to make space for nerves that may have become compressed due to inflammation, for example),
-and, finally, with all the above supports, patience with a recovery process and faith in your body’s capacity to sort it all out, comes with that understanding of the magnitude of what you’ve been through and how long it takes for the body to fully recover. My regular PT (because pelvic inflammation and arthritis became more painful after surgery, making walking stair climbing and sitting a bit more challenging) showed me websites that explain about timelines for recovery after surgery…you can look up 4 stages of wound healing…there are several websites…I don’t want to direct you to a specific one as they might be trying to sell something…the gist of what she showed me was that it can take a year or longer for our bodies to move through this process, and different things are needed by the body during each stage. This has allowed me to keep working on what I can and to try to trust that my post-surgery body is slowing organizing itself.
-I am also seeing that radiation enteritis, in which tissues of the intestines become inflamed after radiotherapy, can last for many weeks after the end of radiation treatments…I read on another Mayo connect thread that radiation continues inside your body for a few months after the last treatment, which is why scans are not done immediately following the conclusion of treatment). This suggests to me (no one’s expert by a long shot…no medical training whatsoever, just another curious traveler on this road) that whatever effects you are experiencing could just need more time before they will begin to subside. I say this to offer hope, and to encourage you to tell your team what you are experiencing so they can monitor it and refer you to good pelvic pt or integrative oncology providers who can help you sort out what would help your body in its recovery.

With care and best wishes for your/our continued healing,

Gynosaur
-
-

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@jc100

I was just diagnosed papillary source uterine cancer after a total hysterectomy. I would appreciate hearing women’s experiences with this cancer. A six-cycle of Carbo/Taxol chemo was recommended.

Jump to this post

I had it incorrectly. It is papillary serous endometrial cancer.

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How do I post a new post with a new topic?

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@gynosaur42

I’m sorry you’ve been struggling with this, @rmann22434baisley. This sounds miserably uncomfortable, can be anxiety-triggering and takes a lot of time and energy away from getting back to a “new normal” life. Changes in bowel function have been a part of my gyn onc post-surgical experience (surgery 2/23), even without chemo or radiation so far. I’ve had bouts of both constipation and loose stools with very short stretches of normal functioning.
Things that have helped for me:
-reassurance that this is not a new cancer symptom (checking with my GYN ONC team)
-working with an integrative oncologist (a naturopath with training in oncology) to sort out what causes my particular digestive changes,
-as @joybid suggested, fermented vegetables (or probiotics…I’ve done both in my life and now prefer the veggies, which are cheaper, just as effective for me, and can be cabbage, beets, carrots, etc. Some can be flavor boosted with fennel, ginger, carraway, etc). I eat 4-5 TBSP before breakfast each day). I hope, when time and energy become abundant, to learn how to make these for myself, so I don’t have to pay someone for my probiotics either way).
-fiber…I like psyllium husk, I began using first for loose stools, but which can either slow things down or smooth them out depending on how much water you drink with it…takes some playing with it to adjust, but feels much gentler for me
-pelvic PT to address changes in the nerves and smooth and striated muscle tissues of the pelvis which have been relocated when the uterus was removed…cuff of vaginal gets re-attached to ligaments toward the sacrum bone of the spine…lots of nerves there (understandably) that can get “upset when their neighbors and partners in functioning have been removed” as my pelvic PT tells me, and they can U/S and examine to see how you’ve been put back together and then do techniques to help those nerves and muscles wake up, calm down, coordinate with each other and function better (specific types of movement, pelvic massage a pelvic PT can do and neural glides to make space for nerves that may have become compressed due to inflammation, for example),
-and, finally, with all the above supports, patience with a recovery process and faith in your body’s capacity to sort it all out, comes with that understanding of the magnitude of what you’ve been through and how long it takes for the body to fully recover. My regular PT (because pelvic inflammation and arthritis became more painful after surgery, making walking stair climbing and sitting a bit more challenging) showed me websites that explain about timelines for recovery after surgery…you can look up 4 stages of wound healing…there are several websites…I don’t want to direct you to a specific one as they might be trying to sell something…the gist of what she showed me was that it can take a year or longer for our bodies to move through this process, and different things are needed by the body during each stage. This has allowed me to keep working on what I can and to try to trust that my post-surgery body is slowing organizing itself.
-I am also seeing that radiation enteritis, in which tissues of the intestines become inflamed after radiotherapy, can last for many weeks after the end of radiation treatments…I read on another Mayo connect thread that radiation continues inside your body for a few months after the last treatment, which is why scans are not done immediately following the conclusion of treatment). This suggests to me (no one’s expert by a long shot…no medical training whatsoever, just another curious traveler on this road) that whatever effects you are experiencing could just need more time before they will begin to subside. I say this to offer hope, and to encourage you to tell your team what you are experiencing so they can monitor it and refer you to good pelvic pt or integrative oncology providers who can help you sort out what would help your body in its recovery.

With care and best wishes for your/our continued healing,

Gynosaur
-
-

Jump to this post

thank you for all the information. It helps to know this is common and can be worked on in time.

REPLY
@jc100

I was just diagnosed papillary source uterine cancer after a total hysterectomy. I would appreciate hearing women’s experiences with this cancer. A six-cycle of Carbo/Taxol chemo was recommended.

Jump to this post

@jc100 Please be encouraged to know that I have just completed six cycles of chemo with the CARBO TAXOL plus KEYTRUDA. These drugs were used to treat my stage IVB endometrial cancer. following a total hysterectomy. As of March 2023, KEYTRUDA, an immunotherapy drug, was approved by the FDA to treat our type of cancer. After the second cycle, my oncologist lowered the TAXOL 20%. This drug causes the most terrible but manageable symptoms like hair loss, diarrhea and neuropathy, among other things. They also give you benadryl to ward off allergic reactions to drugs, and steroids that kept my weight up and made me prediabetic. The drugs is administered based upon your weight, so the steroids prevent you from shedding even a pound, so seek advice from a nutritionist before treatment. Nurses and doctors told me to eat whatever I wanted, like milk shake because you lose your appetite and tastes during treatment. So be careful to focus on consuming healthy proteins, fruit and vegetables. Chemo kills of good cells, so you need to eat iron ruched foods as well to help replenish healthy cells, otherwise your bone marrow will suffer, in my layman term. Eat the BRAT diet of diarrhea sets in, usually the first week. Happy to answer any other questions that you may have. Most importantly, stay positive and rely on the support of family, friends (but at boundaries so they don't visit to often or within the first 10 days after treatment when you're not at your best) and good forums like this one. God bless and keep you!

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@ccwill
Thank you so much for sharing your experience of chemotherapy for our kind of cancer. I definitely will consult a nutritionist so I can stay healthy through the treatment. I may ask you more questions once I start my chemo.
Thanks again! I appreciate it so much.

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