• Help..we are devastated

    Asked by Tesfa on Wednesday, February 27, 2013

    Help..we are devastated

    My wife is diagnosed with colon cancer 3 weeks ago and she has gone through surgeries to remove the colon and both ovaries. We are told that the next plan is to go through Chemo. We are just worried where to go for the treatment to get the best so that we will save her life. What is sad for us is she was diagnosed with this cancer a week after giving twin boys

    24 Answers from the Community

    24 answers
    • AlizaMLS's Avatar
      AlizaMLS

      Dear Tesfa,

      I am so sorry to hear of your wife's illness. If I understood your post correctly I'm guessing that she just gave birth to twin boys?! That itself is wonderful but of course it makes life more complicated for both of you right now and I hope you have family and friends and a religious community available to help you through what might be a difficult time.

      This forum is a wonderful place as well for both you and your wife (when she's feeling well enough) to seek support. Most of us are cancer patients (myself included, I have Breast Cancer, but am cancer free and don't need chemotherapy).

      I live in NYC and so I go to Memorial Sloan Kettering for treatment. I am a (retired) trained Medical Librarian. I sometimes do research for people who need it. I can see that you are overwhelmed right now understandably. I also noted that you live in Florida. I think that the Florida Hospital Cancer Institute might be a good place to start for you and your wife unless you are able to leave your babies with family and travel a distance and stay for a longer period of time. Even this might be a distance from where you live. Their URL is:
      www.floridahospitalcancercenter.com. I have not heard of them before. I searched "Cancer Hospitals Florida" in Google and this is what came up. There is also a branch of The Mayo Clinic (which is a very fine highly rated hospital [their main hospital is in Minnesota]) in Florida, but I'm not certain as to whether they treat colon cancer. You may want to contact them and check. The two best search engines I use are Google and Dogpile.com (which is all the search engines included in one). By the way, I'm a (retired) trained Medical Librarian. I do not offer Medical advice, only referrals - to books, hospitals, doctors when I can, and recreational reading. Your wife may want some fun things to distract her. If she does, either you or she can contact me and I'd be happy to refer you to some.

      Take each day and even if necessary, each hour as it comes so you are not so overwhelmed. Find soothing music for your wife to listen to. Skip the news with all the murders, etc. so your wife doesn't have to think about that. Have her watch funny shows on tv. Be happy with your babies.

      Hopefully they caught her cancer early and things will be ok. It will take a bit of time. You're not alone here. People on this site understand what you are going through and certainly your wife as well.

      If you want me to give you a more comprehensive or inclusive listing of Cancer hospitals throughout the country, I can do so, but upon hearing you just had twins, I thought you'd want to stay local.

      My congratulations to you on the birth of your sons!! Next step to get your wife well!!

      Wishing you peace, calm, strength, in difficult times and for your wife my best wishes for her complete recovery!

      Warmest wishes,
      AlizaMLS

      about 4 years ago
    • nancyjac's Avatar
      nancyjac

      IMO, people put too much emphasis on where to get chemo treatment. Her medical oncologist determines her treatment plan (which drugs, what dosage, how often, etc.), the chemo center just carries it out. With rare exceptions, the level of care during chemo administration is pretty standard. So go where ever her oncologist recommends or where ever is most convenient.

      about 4 years ago
    • Queen_Tatiana's Avatar
      Queen_Tatiana

      My husband (Peroll) is in his 8+ year of colon cancer. Chemotherpay is ordered by your oncologist making where you receive it not the issue. The best advice I can offer you is to develop a great relationship with your oncologist--one where he knows you and you him. Having his relationship with his oncologist all these years has been the saving grace for my husband. He goes in every appointment with a list of questions, and every question is answered. Together they discuss and plan out his treatment course, and when more indepth questions need addressing they conference with a researcher at Cancer Care Alliance (that has seen my husband previously.) If you can post the chemo drugs she will be using that would be helpful for people here to know, and they can address them.

      about 4 years ago
    • Tesfa's Avatar
      Tesfa

      Thank you so much for the quick responses.
      Actually my wife didn't start the Chemo as she is still recovering from the surgery she had two weeks ago. We got an appointment for details of her treatment with her current Onchologist. My big dillema and question is about where to go for the treatment. Her current hospital is a teaching hospital with more of research. The other option we have is Mayo clinik located in jacksonville but we dont have any info if they have speciality in this type of cancer. It is just crazy for us to get an opinion.

      about 4 years ago
    • carm's Avatar
      carm

      Tesfa,
      I am an oncology nurse, but nothing I can say can beat the advice that Queen_Tatiana gave you. She is right, let your doctor guide you thru this process. Your surgeon will recommend an oncologist, and to play it safe I would get copies of your wife's records to date and seek another oncologist just for a second opinion. You can find an oncologist on the health grades website. This is a site where physicians are graded and reviewed by the public, not by their peers. If you need more help, I am happy to assist you in any way. Best of luck to you both. Your wife is lucky to have such a caring partner, and you will be her best medicine in the days ahead, Carm RN.

      about 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      I'm so sorry for her diagnoses, any cancer is bad, but I understand the factor that makes hers just that much tougher. As for where to go, that will be your choice of course. All I can offer is what I done, in the 3 times I have been diagnosed.

      The first time, I just went where I was told. No questions, no research, nothing, just blindly went. I was younger and didn't know what to look for anyway.

      Second time, I had already been treated by the Dr's and center at the first diagnoses, and they turned out to be great, so I went back there.

      Third time, 18 years later, I had the "benefit" of the internet. I searched, I took the Dr. that was recommended by my surgeon and searched him. I ultimately took that Dr. And again, it turned out to be a great choice.

      I wish you the best in making a good choice, and with the Mrs. swift, speedy and easy treatments. Please stay in touch throughout the process. Lots of people here to help with your journey.

      about 4 years ago
    • AlizaMLS's Avatar
      AlizaMLS

      Dear Tesfa,

      It is definitely not crazy for you to phone The Mayo Clinic and ask whether they treat colon cancer! You're expected to do that. This isn't a time to be shy about such things! I know for a fact that they do treat breast cancer and if I were in Florida (in that area) that is likely where I'd go for treatment. Some people on the site feel it doesn't matter where you go, I disagree. That's one of the things that is good about the site is that you get different opinions. I think if you go to a highly rated hospital that has some degree of specialization you can likely find a better oncologist who does mores research, writes and presents more papers, treats more cases, etc. and the percentages of people they cure may be higher (that's why I go to Memorial Sloan Kettering in NYC). I could have gone to a hospital in Brooklyn with a competent breast surgeon, but several friends who had cancer went to Sloan Kettering and convinced me that it was the (underline the) place to be treated. It's not only the name. Research the oncologist once you meet him/her (google him/her and see what you find). Do it now (I do not mean to sound mean). The sooner you find out, the better for your wife!...;)

      AlizaMLS

      about 4 years ago
    • Tesfa's Avatar
      Tesfa

      Thank you all for sharing your expierence. Time is not in our side as we have to start the treatment soon. I am so nervous. Does anyone have an expierence about Mayo clinik? I scheduled a discussion with her current Onchologist and another onchologist from Mayo. This thing happend to us unexpectedly and have no idea what type of questions I need to ask them. Is there anything I should know and ask before I meet them?

      Carm, you mentioned that you can provide me a public review website and I would be happy to see that and any advice you have.

      Thank you all

      about 4 years ago
    • Peroll's Avatar
      Peroll

      Tesfa, I can help wioth some questions to ask. I have been figthing colon cancer for 8 1/2 years and have lots of experience. First you need to know that this is not a death scentance it can be beat and there are lots of good treatment options. Also I see that you list the cancer as stage IV but have not provided any details. Stage IV means that the cancer has spread to other part6s of the body. The most common are the lungs and the liver. Since your wife had surgery on the colon I assume that the cancer in the other organs is small, or they likely would not have done surgery first.

      First thing is to trake a note book to write things down so you do not have to remember everything.

      I aslo assume that the cancer in the other parts of the body was located by a CT or PET scan. Neither of these can determine if what they see is really csancer as half the popu;ation has spots on thier lungs of liver that will show up in one or both of the scans and is not cancer. Thus the first questions you need to ask is exactly where the cancer is and if it can be biopsied. If it can then it may be worth the trouble to know for sure.

      Now you need to start asking about treatment plans and options. First ask what the treatment plan that the Dr recommends is with as much detail as possible. I suspect that since you are meeting with oncologists they will propose chemo as the first option. You need to ask what regimine and what the side effects are. Ask what alternative regimines are available (there are several for colon cancer) and why they were not chosen.

      You should next ask about other types of treatment such as radiation, cyber knife other surgeries and such (there are lots of potential options you may want to research some of them before the appointment) and why they were not recommended. You should also ask what other Drs were consulted in comming upo with the treatmemnt plan. Most hospitals have tumor boards where all of the cancer specailties get together and review the cases and offer opinions. Ask if your wife's case was refered to a tumor board and what was said there.

      You should next ask about how the treatment will be assessed with follow up tests and scans to determine if the treatment is working and how well. Chemo should at least prevent any tumors from growing to be successful and hopefully shrink any tumors. Scans and blod tests should be used at least every 3 months to check progress. You should ask what happens igf the treatment does not work. There are lots of alternatives so there sill always be a back up plan.

      As for where to get treatment. If your local hospital is a teaching hospital then it should have access to all of the treatments. Having a second opinion from hte Mayo clinic is helpful in selecting the treatment regimine. Even if you go with the Mayo recommended regimine you should be able to havbe it adminestered through the local hospital saving the need for travel.

      Good Luck and let me know if you have any more questions or need clarification.

      about 4 years ago
    • geekling's Avatar
      geekling

      My Lord, how horrible for your family to have this most terrible moment at the same time you have two most wonderful moments. I'm so very sorry for what your wife has gone through.

      I have a friend who had a different type of cancer. The doctors he saw could not find the primary tumor. He, his wife, and I talked it over. He decided to see the doctor (1,500 miles away) who had invented the particular treatment. That doctor found the primary tumor and told him it was fine to have chemotherapy with the less able doctors near his home but I know they would always have kicked themselves in the shins unless they had gone for that opinion from the best doctor they could find. He had squamous cell carcinoma which presented in his throat.

      I had the same type of cancer which presented behind my anus. I had no intention of treating conventionally at all until a new chemotherapy was made public which had a 95% cure ratio and that ratio made me to change my mind.

      Do what you need to do now to prevent future regret. It always matters with something so very personal and dire.

      Very good luck to you and to yours.

      about 4 years ago
    • nancyjac's Avatar
      nancyjac

      Tesfa,

      As has been said, where is not an issue.Part of the details that she has an appointment for will be where she will receive treatments. You both have enough to deal with right now. Don't spend your energy on the non-issues. Her oncologist while prove the where and the schedule. Unless you have some major logistical
      issue with it, go where ever he schedules it.

      about 4 years ago
    • SpunkyS's Avatar
      SpunkyS

      What challenges for your family. I think the most important thing is to go to place where you are comfortable with the staff and physicians - even if it means shopping around. Prayers for your family.

      about 4 years ago
    • myb's Avatar
      myb

      I had asked my Physicians Assistant from colon cancer surgery for a recommendation for an Oncologist at the hospital at Upenn in Philly which was almost a 2 hr trip one way. I am sure you can ask the surgeon's team if they recommend anyone at your current facility or the Mayo Clinic.

      I also asked friends and family members for a local oncologist.

      After meeting with both the local and Upenn Oncs, my husband and I both decided to do the trek to Upenn. Their chemo treatment plan was almost the same, but the Upenn overall plan was just so much more superior in my mind. You have to feel comfortable with the oncologist as basically your doc for the next 5 years while you have followups with them after you finish treatment. You want someone who is accessible to you, not someone who tells you that some patients have a hard time getting through on the phone to the office.

      Also you may want to consider your health insurance for a recommendation as mine actually reached out to me to offer cancer guidance. They mentioned that they recommended their centers of excellence which Upenn happened to be one. Gave me the warm fuzzy right away!

      about 4 years ago
    • CrazyHarry's Avatar
      CrazyHarry

      I'm using the Mayo system here in Phoenix and I have nothing but the best to say about the care I'm receiving. From the doctors to the nurses and the rest of the medical team, the care has been the best. I love the integrated team approach.

      My cancer is in me rectum and I'm nearing completion of the first phase of chemo/radiation before surgery.

      Congrats on the Mew family members and good luck as you start your healing journey.

      about 4 years ago
    • Tesfa's Avatar
      Tesfa

      I spent most of my time browsing the internet but I ended up with confusion and fear. After calling the Cancer society of America they directed me to join this discussion forum and I am so comfortable than yesterday.

      Thank you all for your encouraging messages and God bless

      about 4 years ago
    • ElizaM's Avatar
      ElizaM

      Along with all the other advice here I would also like to say that checking into your insurance will pay off in the end too - the costs of treatment are astronomical and have forced financial ruin in my family. Not that the finances are your major concern, but the grief it can cause after the fact can be devastating at a time when you really want to focus all your energies in the healing process.
      My very best wishes to you and your wife and your beautiful babies - I pray that you find time to delight in them and that their very presence gives you the courage and wisdom to work through all this and create the most loving environment and support for every dear soul in your family.

      about 4 years ago
    • Clyde's Avatar
      Clyde

      Careful with too much internet browsing. There is a lot of XXX info and scary info out there that you really don't need to ingest right now.

      Even though it is counter intuitive, the best thing you can do is be calm and patient. Write down your questions in advance (start the list and write down everything, you can edit it before the appointments) and take a note book to write down answers. Treat this as you would any fixable problem. Examine the facts, study the prospective solutions and then decide. The drs you have are more important than the center imho and money issues can be just as overwhelming as the cancer itself so try and chill a bit. Panic is natural, but not helpful. Good luck and congrats on the boys. I'm jealous.

      about 4 years ago
    • Nightengale's Avatar
      Nightengale

      Hey Tesfa... Hang in there. Get a second opinion before you start treatment but be prepared for the fact that cancer treatment is highly standardized so most oncologists agree with each other except for small details. That's a good thing. They are all tuning in to what is the most recent ideas of what works best. Myself and the small circle of stage IV colon cancer individuals who are all young like me all reach out to you with lots of love and hope. We are all doing great and in good health. Some of us are 6+ years out from diagnosis and life is pretty normal. Your chemo journey will be a pretty mild one... some types of chemo are more difficult to tolerate than others. i think we all agree that the chemo for colon cancer is such that life can proceed in a pretty normal manner. Best advice... EVERY Single time that Anyone offers help... take it! Especially with new twins! Make a list of what you need and fill in the blanks with everyone's names. Check out takethemameal.com and offer to let people start signing up for nights to bring in dinner. People everywhere are good and want to help.

      about 4 years ago
    • Cmurphy's Avatar
      Cmurphy (Best Answer!)

      One thing I read in a book on integrative oncology is to get help. With the new babies, you cannot do everything yourself. You have friends and family with different skills. Someone can help you make all those calls and keep records of what is learned. If anyone asks to help you, let them. Give them what they are best at. Your wife needs support, you need someone to speak with, your babies need care. Let your friends and family take some of the burdens. I hope that there is someone with a clear head and analytical bent who can go to medical appointments with you as well - with a list of questions prepared in advance and to take copious notes. This will help you follow the medical directions and make decisions. There is so much information coming your way. Ultimately you may decide convenience of location and a good relationship with a local doctor trump a highly rated comprehensive cancer center- but I think you are wise to at least explore Mayo especially if it is not too difficult a commute. My husband is treated primarily at UCSF which is 90 miles away but requires frequent overnight stays. Nevertheless, we have maintained a close relationship with a local oncologist whose judgment we trust and whose advice we seek when confronting options such as the drug trial my husband is pursuing. Best of luck to you and your family and prayers......

      about 4 years ago
    • Tesfa's Avatar
      Tesfa

      Carmichael,

      Thank you for your advise. Unfortunately we are living in a small university town where we don't have any family except few colleagues. Our families are living outside US and they required a visa to come and help us. They applied a visa several times but the emabssy denied them for unkown reason. I am just in a XXX with 2 newborns and a 4 yr old kid helping my beloved wife. Life is just hard. These kids are our gifts from God and they deserve care but their fate is on someone who doesn't care about them.....

      about 4 years ago
    • PhillieG's Avatar
      PhillieG

      Sorry to hear of your wife's cancer. There's been many great answers posted. I've been living with stage IV cc cancer for 9 years. I strongly suggest that your wife gets under the care of the BEST FACILITY POSSIBLE.

      That doesn't mean the treatments have to be done there but most often the brightest minds are at those hospitals. I've been fortunate to have been able to go to MSKCC in NYC and am under the care of Dr. Kemeny. I highly doubt I'd be here today without her help and treatment.

      A suggestion for going to appointments. Aside from writing questions down and bringing someone with you, you may want to bring a voice recorder so you can review the meeting afterwards.
      I hope this helps...

      about 4 years ago
    • Tesfa's Avatar
      Tesfa

      Can anyone help??

      Whenever we go to see our doctors, we came back sad as they always give as terifying info.

      What is the difference between terminal and stage4 colon cancer?

      The cancer is bad and is spread all over the abdomen and lyymph nodes? what does this mean??

      Tomorrow is our first appointment to see our onchologist and they told us the meeting will take about 4hrs. I am stressed if we will get the same teriying stories.

      Oh God please help us....we never prepared ourself to be in this situation

      Thank you for your help

      Tesfa

      about 4 years ago
    • AlizaMLS's Avatar
      AlizaMLS

      Dear Tesfa,

      Breathe deeply (seriously). Now, for the important things! I'm guessing you and your wife have people (family, friends, or caregivers) to look after the twins while you're at the doctor's so that you don't have to be distracted taking them along with you at this time. If not and you belong to a religious community, it's a good time to phone your clergyperson and talk with her/him and have them use their talents in getting members of your Congregation to help you right now with your babies, with meals, with shopping, rides to the doctor, etc.

      I certainly understand as does everyone on this site what it's like to get "terrifying information" of one sort or another. I'm not a doctor so I can't offer you medical advice-I'm a Medical Librarian, so I can only offer referrals. What I'd recommend you do now is contact CancerCare immediately for counseling for yourself (as a caregiver) and for your wife (as a patient). This will be very helpful to you. Their counseling isn't the same as "regular therapy". It's from highly specialized Oncological Social Workers who deal with Cancer patients no matter what Stage of Cancer they're in. They can help you calm down to make better decisions for yourself, your wife and your children and this sounds like a time when good decisions are necessary. It's natural to panic-we all do, but it's not helpful to make important decisions based on panic.

      The other thing I'd recommend that you do is to get a second and even a third opinion (if your insurance, income or the goodness of friends and family permits) from another or other oncologists. I may have some recommendations for books but that's for later on.

      Let's try to take things a step at a time right now. Get through dinner and this evening and try to sleep.

      Warm wishes,
      AlizaMLS

      about 4 years ago
    • alivenwell's Avatar
      alivenwell

      If other people are taking care of your twins, you might want to get a notarized written letter that lists your physician, their pediatrician, insurance information and your phone number(s). This could come in handy if the twins have an emergency. It may be necessary to list names of those who can handle their medical information.
      Other than that, I congratulate you as a father and a caring husband. Maybe while your wife is not feeling well, it may be a good idea to photograph the twins and date the photos for your wife to review when she feels OK. Chemo can induce boredom, fatigue and one needs positive distractions at a time like this.

      almost 4 years ago

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