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starrlight
@starrlight

Posts: 31
Joined: Feb 11, 2017

Help to reconstruct my life and body due to 2 types of cancer.

Posted by @starrlight, Feb 11, 2017

i have two types of cancer Brst and rectal tumor, have been receiving treatment for the Brst not for rectal, i have been unable to find a surgeon for the tumor in this area. i turned to Mayo Clinic once again a couple of days ago and see they have 3 surgeons that practice less invasive surgery for this issue instead of putting the bag on which is a very serious operation and i could not survive it nor would i want to. i am praying that one of these surgeons can help me as this is my last option and believe we should continue to search for what is best for our bodies as we all have different levels of strength and only we know that and the Dr’s who have the knowledge and i trust Mayo Clinic as they are rated no 1 in the country. As far as the Brst. Canc. i am being put on Ibrance within the next week or so and there is not to much the clinic here can help me with however perhaps Mayo Clinic can and will.

Would love to hear from anyone who is or has gone through anything like the above, i had 24sessions of radiation for the rectal tumor in 2015 rec’d third degree burn which was horrible and have side affects today from that. Have heard of the Proton Radiation at Mayo in AZ. as they were going to build a bldg. just for that and have read about good results from other clinics as they target just the tumor and not anything else.

Apologies for the long explanation above however had no-one really to talk to about my feelings, have been told one thing from my Dr. and another from my Canc nurse as to what the drugs are that i am taking for the Brst Canc, so want to go to Mayo Clinic so they can help me to reconstruct my life and body, nutrition etc.

Thank you for reading this and hope to hear from you, i do believe in our Heavenly Father otherwise would not have been directed to this connect today from Colleen of Mayo Clinic, thank you Colleen.

Would love to hear from you.

Starrlight.

REPLY

Welcome to Connect, @starrlight. I’m glad you joined us. What a lovely username you chose.

Thank you for the details of your journey thus far. It helps me to be able to connect you to other members who can relate. I’d like to introduce you first to @travelgirl who was also diagnosed with 2 different cancers: lymphoma and cecum (colorectal) cancer. Please also meet @joannem @user_cha5e73f6 @brucey1 and @soul who have experience with colorectal surgery and colostomy, either themselves or a loved one. Then there’s @sbee and @hopeful33250 who both have had an Endoscopic Mucosal Resection (EMR)

Starrlight, have you already called Mayo Clinic? If not, here are the contact numbers, including for Arizona http://mayocl.in/1mtmR63
What are the less invasive surgical options you’re interested in learning more about?

Hello @starrlight I’m so glad that you joined us at Mayo Connect. I joined last year after I was diagnosed with my third carcinoid cancer. This online patient support group has been wonderful. I so admire the steps you are taking to get the best medical help you can have and I admire your decision to go to Mayo. I also searched for the least invasive surgery that was possible and found it at Univ. of Michigan near where I live. Please keep in touch with us and let us know you are doing. Best wishes, Teresa

@colleenyoung

Welcome to Connect, @starrlight. I’m glad you joined us. What a lovely username you chose.

Thank you for the details of your journey thus far. It helps me to be able to connect you to other members who can relate. I’d like to introduce you first to @travelgirl who was also diagnosed with 2 different cancers: lymphoma and cecum (colorectal) cancer. Please also meet @joannem @user_cha5e73f6 @brucey1 and @soul who have experience with colorectal surgery and colostomy, either themselves or a loved one. Then there’s @sbee and @hopeful33250 who both have had an Endoscopic Mucosal Resection (EMR)

Starrlight, have you already called Mayo Clinic? If not, here are the contact numbers, including for Arizona http://mayocl.in/1mtmR63
What are the less invasive surgical options you’re interested in learning more about?

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Greetings! from Soul. Dear Colleen! How are you? It has been almost a year since I joined you. I am now back again in Thailand to visit My Mom for her Annual check up after surgery related to her colorectal cancer. We have been grateful to Mayo Clinic and everyone participated in the discussions with individual experience, support and advice mentally . I am so blessed to see my Mom is still in a good spirit. My Mom has followed up and has been carefully on her healthy eating habits till now. She went for the PET scan 2 days ago. The report came out great that she does not have cancer cell. I am so pleased to see her recovering well but slowly since she is now 79 years old. I would like to share with everyone who has been suffering the same disease like my Mom ( colorectal cancer) . Just keep positive and move on the right channel and follow up with the doctor's medical advice along with the support. Mental support to the patient is one of the most critical part when you are battling with cancer. I will keep on monitoring on my Mom progress and keep you posted. Thank you for letting me be in the group. Have a good evening. Warm regards, Soul

Hi @starrlight… like collen mentioned, i was diagnosed with 2 primary cancers, 2 weeks apart.. mayo clinic was my 3rd Dr. i went too.

I do believe if i had not gone to mayo clinic my life would of been an utter mess right now. Mayo clinic drs and staff make you feel like famly. There team of Drs work together on your behalf to give you, your best chance possible to beat cancer.

I had colon surgery just over a year ago. The surgical team was phenomenal. I went home only needing tylenol. And today my body doesnt even seem to miss the cecum section,of the colon, they took out. In all , i had 12 inches of my colon removed and 20 lympth nodes. They did remove all the colon cancer so i am now free of that.

My lymphoma is monitored by blood work every 3 months and ct scans every 6 months. So far so good.

They just monitor and watch me. My next appointment is on 2/21..

I love that they automatically set up my appointments .

Please call and go there. They will get you back to normal as soon as they.
I wish you the best

Sorry I did not have cemo, + radiation first.  – get tumor small – then have lumpectomy.A stuwardess did it that way.I’m going to finally have reconstruction now.
Mari

@colleenyoung

Welcome to Connect, @starrlight. I’m glad you joined us. What a lovely username you chose.

Thank you for the details of your journey thus far. It helps me to be able to connect you to other members who can relate. I’d like to introduce you first to @travelgirl who was also diagnosed with 2 different cancers: lymphoma and cecum (colorectal) cancer. Please also meet @joannem @user_cha5e73f6 @brucey1 and @soul who have experience with colorectal surgery and colostomy, either themselves or a loved one. Then there’s @sbee and @hopeful33250 who both have had an Endoscopic Mucosal Resection (EMR)

Starrlight, have you already called Mayo Clinic? If not, here are the contact numbers, including for Arizona http://mayocl.in/1mtmR63
What are the less invasive surgical options you’re interested in learning more about?

Jump to this post

Hi Colleen,Want to say thank you for your help   many have responded to the Discussion i began yesterday and today,  will respond to them today as much as possible, it is very rewarding to know their are real people who care about others such as you and those who have responded thus far.   Hopefully i will be able to help someone else as well, be a Champion.Are you a canc. patient and live in AZ?There are 3 Colorectal  surgeons at Mayo in Scottsdale AZ.Each use less invasive surgery, Da Vinci/robotic resection, minimally invasive techniques, including single-incision surgery.  This is the surgeries that each of the surgeons perform.  The two surgeons including Hakimen have said i would have to have the bag permanently however he did not encourage this.  the first surgeon said i could have it reversed.  this is a major operation i could not survive that due to age and other issues, however i am ambulatory.Have a wonderful day.Starrlight

Hi hopeful,Thank you for your input on Mayo Connect, as so many others i have tried to take care of the illness yet seems that the regular Dr's are so overbooked that it is almost impossible, so like the others we just keep on keeping on hoping that we will connect, and this is certainly a daily prayer for all of us.  Prayerfully Mayo will be the ans. for all who seek them to help us.  Have had one Dr. say this and another say something else this is so confusing not at Mayo because have not been there yet.Have a Wonderful Day,would love hearing from you anytime.

@hopeful33250

Hello @starrlight I’m so glad that you joined us at Mayo Connect. I joined last year after I was diagnosed with my third carcinoid cancer. This online patient support group has been wonderful. I so admire the steps you are taking to get the best medical help you can have and I admire your decision to go to Mayo. I also searched for the least invasive surgery that was possible and found it at Univ. of Michigan near where I live. Please keep in touch with us and let us know you are doing. Best wishes, Teresa

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Hi Teresa,Thank you for responding to the post on Mayo Connect, it enlightens me to know that there are so many that truly care and someone to identify with, the feelings aspirations etc.Did you have the surgery that was what you wanted and expected?  How are you doing today?  I have turned down the bag surgery and just know there is something else that this body could endure. i know that my diet is out of control due to Dr's that do not have compassion for their patients.Teresa will keep you in my prayers as will all on Connect and others who are living with this disease, praying that there will be a cure for all someday.Would love to hear from you when you have time and will let all know on my outcome.Have a Wonderful Day,StarrlightMy youngest daughter's name is Teresa i call her Teri however.

@mari

Sorry I did not have cemo, + radiation first.  – get tumor small – then have lumpectomy.A stuwardess did it that way.I’m going to finally have reconstruction now.
Mari

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Mari,The tumor in my brst. is too big they cannot remove it now so the Dr. is putting me on Ibrance a new trial drug to try to reduce the tumor as Anastrozole after one yr. did not work. i did not have chemo as i refused it, yet guess will be taking it in pill form.Lots of luck on your reconstruction Mari would love to hear from you when you can reply on how you are feeling.HAVE A WONDERFUL DAY,starrlight

@colleenyoung

Welcome to Connect, @starrlight. I’m glad you joined us. What a lovely username you chose.

Thank you for the details of your journey thus far. It helps me to be able to connect you to other members who can relate. I’d like to introduce you first to @travelgirl who was also diagnosed with 2 different cancers: lymphoma and cecum (colorectal) cancer. Please also meet @joannem @user_cha5e73f6 @brucey1 and @soul who have experience with colorectal surgery and colostomy, either themselves or a loved one. Then there’s @sbee and @hopeful33250 who both have had an Endoscopic Mucosal Resection (EMR)

Starrlight, have you already called Mayo Clinic? If not, here are the contact numbers, including for Arizona http://mayocl.in/1mtmR63
What are the less invasive surgical options you’re interested in learning more about?

Jump to this post

@starrlight.. i thought i would share with you how i approached my personal plight.

LIke you, i thought i knew my best option. And your option, just may as well be the right one. I have no idea.

I went to mayo wanting the least invasive colon surgery. Being 53 yrs old you want the least invasive possible surgery option. I understand your thinking.. However, what it boiled down too, was that Mayo felt my best option to beat the cancer was removing 1 foot of colon by laparoscopic surgery and taking 20 lymph nodes to be 100% certain i was colon cancer free.

I reccommend going to Mayo with an open mind, and let them choose their top doctors to treat you. Cause i can tell you, all three of the Drs listed you saw, will have a say in your care. They work together as a team. When i had my surgery, there was a constant flow of Drs coming in, and checking on me. They all made the rounds to observe and evaluate me. I was super impressed.

Nothing goes unnoticed or missed. They do not operate like any hospital you been too in the past.

When i told my friend that they found i had lymphoma . (Who is a consultant for the joint commisionion). His answer , what do you expect? You went to the best, they find stuff, you don’t even know you have. Lol..

Good Luck Starrlight..

@colleenyoung

Welcome to Connect, @starrlight. I’m glad you joined us. What a lovely username you chose.

Thank you for the details of your journey thus far. It helps me to be able to connect you to other members who can relate. I’d like to introduce you first to @travelgirl who was also diagnosed with 2 different cancers: lymphoma and cecum (colorectal) cancer. Please also meet @joannem @user_cha5e73f6 @brucey1 and @soul who have experience with colorectal surgery and colostomy, either themselves or a loved one. Then there’s @sbee and @hopeful33250 who both have had an Endoscopic Mucosal Resection (EMR)

Starrlight, have you already called Mayo Clinic? If not, here are the contact numbers, including for Arizona http://mayocl.in/1mtmR63
What are the less invasive surgical options you’re interested in learning more about?

Jump to this post

Hi travelgirl,Wow what a testimony you have on Mayo Connect, so your surgery was less invasive and no bag which i will not have.I am alone my daughter lives in W VA and unable to come here to offer support, not sure how to go to Mayo as do not drive  that far which is about 2hrs. from where i live. i do know that the Canc Society has a House for Canc patients  in AZ like the McDonald house for children, cannot remember the name right now.  Have had the runaround on this canc. because i waited to long in going to Dr. i thought i was healing the Brst Canc via healthy living and methods, it did not work for me the tumor got out of control.  The rectal tumor do not know how long i have had it, they found a mass in 2015 through colonoscopy and that Dr. gave me two different diagnosis, he removed two polyps which he wrote as canc. then called me in person the next day and said the biopsy was negative no canc. so i did not think much more about it then continue to have loose bowel so went to a MD. surgeon here who was so negative that i felt i had no help at all and there is not colon surgeons where i live.  I truly pray that someone where i live will come into my life as a support person to go to Mayo, i have always taken care of myself however am tired now.  I have other medical issues however will not discuss as this is about Canc.Have a Wonderful Day and thanks again for the great Testimony.starrlight

@colleenyoung

Welcome to Connect, @starrlight. I’m glad you joined us. What a lovely username you chose.

Thank you for the details of your journey thus far. It helps me to be able to connect you to other members who can relate. I’d like to introduce you first to @travelgirl who was also diagnosed with 2 different cancers: lymphoma and cecum (colorectal) cancer. Please also meet @joannem @user_cha5e73f6 @brucey1 and @soul who have experience with colorectal surgery and colostomy, either themselves or a loved one. Then there’s @sbee and @hopeful33250 who both have had an Endoscopic Mucosal Resection (EMR)

Starrlight, have you already called Mayo Clinic? If not, here are the contact numbers, including for Arizona http://mayocl.in/1mtmR63
What are the less invasive surgical options you’re interested in learning more about?

Jump to this post

@starrlight..Please contact the American Cancer Society and a local cancer support group. The American cancer society offers free rides for cancer patients. You can also contact Mayo clinic. They may know of a local transportation company in your that takes people to their facility. But for certain the American society does have a servive that takes you too your cancer appountments.
Mayo may correct your other issues too. So please give them all your medical details.

@hopeful33250

Hello @starrlight I’m so glad that you joined us at Mayo Connect. I joined last year after I was diagnosed with my third carcinoid cancer. This online patient support group has been wonderful. I so admire the steps you are taking to get the best medical help you can have and I admire your decision to go to Mayo. I also searched for the least invasive surgery that was possible and found it at Univ. of Michigan near where I live. Please keep in touch with us and let us know you are doing. Best wishes, Teresa

Jump to this post

Hi @starrlight. I’ve had three surgeries for the carcinoid cancer and the first two were very invasive major surgeries with hospital stays of 7 – 8 days.. The last one, however, was done with as an endoscopy procedure and as an outpatient. Much better! I’m doing OK now and I’m grateful for each day. Continued best wishes and please keep in touch as let us know how you are doing.

@colleenyoung

Welcome to Connect, @starrlight. I’m glad you joined us. What a lovely username you chose.

Thank you for the details of your journey thus far. It helps me to be able to connect you to other members who can relate. I’d like to introduce you first to @travelgirl who was also diagnosed with 2 different cancers: lymphoma and cecum (colorectal) cancer. Please also meet @joannem @user_cha5e73f6 @brucey1 and @soul who have experience with colorectal surgery and colostomy, either themselves or a loved one. Then there’s @sbee and @hopeful33250 who both have had an Endoscopic Mucosal Resection (EMR)

Starrlight, have you already called Mayo Clinic? If not, here are the contact numbers, including for Arizona http://mayocl.in/1mtmR63
What are the less invasive surgical options you’re interested in learning more about?

Jump to this post

Hi travelgirl,Truly curious when they removed the foot of colon and lymph nodes what did they do after that, reconstruct or???i am in my mid 70's and my body has been through many serious maladies during these yrs. Hopefully you had support during this ordeal.  Hope you had a nice day today.Starrlight

@colleenyoung

Welcome to Connect, @starrlight. I’m glad you joined us. What a lovely username you chose.

Thank you for the details of your journey thus far. It helps me to be able to connect you to other members who can relate. I’d like to introduce you first to @travelgirl who was also diagnosed with 2 different cancers: lymphoma and cecum (colorectal) cancer. Please also meet @joannem @user_cha5e73f6 @brucey1 and @soul who have experience with colorectal surgery and colostomy, either themselves or a loved one. Then there’s @sbee and @hopeful33250 who both have had an Endoscopic Mucosal Resection (EMR)

Starrlight, have you already called Mayo Clinic? If not, here are the contact numbers, including for Arizona http://mayocl.in/1mtmR63
What are the less invasive surgical options you’re interested in learning more about?

Jump to this post

@starlight. I had my surgery 13 months ago. They reattached the small intestine to the large intestine. They used Titanium staples. I went into the hospital on Monday and went home on Saturday. It was a stage 1 Cecum cancer. Since my lymph nodes were clear and clean there are no other treatments needed. Just a CEA blood test and Ct scans for 2 yrs. Once a year for now on, I need to have Colonoscopy. I am what they call a Polyp Farmer. So I need to be checked yearly. My body seriously adjusted just fine. There were mostly people your age having the same thing done. As a matter of fact they handled the surgery better than me. They went home, most of them in 3 days. I took 5 days to get adjusted to the new plumbing in my body. I can eat most everything but Dairy now. Dairy is harder to digest, but then again, I always had an issue eating dairy..

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