Heart is breaking for my 29 yr old pregnant daughter with new diagnosis of stage 4 (?) TSCC.

Hi there. My sweet daughter was diagnosed last week with tongue squamous cell carcinoma. 

She is 29 and otherwise healthy, HPV-, with no history of smoking or drinking...  Apparently this is becoming more common in this demographic. She is married with three little girls, 4,2,and 1, and she's three months pregnant. I am dreading watching her go through this. 

She's being treated at Univ. of Michigan's comprehensive Cancer Center and the plan is hemiglossectomy and radical neck dissection with free forearm flap reconstruction ( a 12 hour surgery) on Nov 6 ( Thursday) and then 30 doses of radiation and probably chemo. They did not do a PET scan because of pregnancy and are using MRI results instead. The MRI showed her lungs are negative but she does have same-side lymph node involvement. We won't know the extent or staging until surgery, but I'm expecting they will recommend chemo. She is being followed by a team of specialists at U of M including fetal health and high risk pregnancy docs who feel at this point she can safely undergo all the recommended treatment and still maintain the pregnancy. 

I'm concerned about (among about 1000 other things) her sweet young children and how they are going to cope with this...how can she communicate with them after surgery? i don't have a good understanding of how clear her speech will be after surgery. She will have a trach postoperatively but that should come out after 2-3 days. Will she be intelligible after surgery? Will she lose her voice during radiation? 

 I'm also concerned about weight loss and her nutritional status while pregnant during treatment. Has anyone else out there gone through this while pregnant? Or does anyone have good advice about nutritional supplements or diets? She's already tired and a little nauseous being pregnant. 

My heart just breaks for her and I would GLADLY take her place and go through this for her. It's just not fair. :/ 

Any advice would be greatly appreciated! 

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Comments

  • Sailor123
    Sailor123 Member Posts: 97
    Tongue Cancer

    Hi momo's momma:

    I am so sorry for your sad news.  I've just been through this same journey, but I am 50 and wasn't pregnant.  I know you would take her place if you could.  I'm a mother to and know you mean it!

    The first thing I want to tell you is that she can do this.  I don't know anything about the pregnancy part, but my mother and I went through this journey together (along with my husband), and I can tell you in the beginning its really scary for all of us.  Things will get better.  Then worse, and then better again.

    I'm concerned when I hear of people having surgery for tongue cancer.  For sure I would recommend a second opinion from a cancer center independant from where she is going now.  There is a tendency to rush in the beginning and your making decisions that will affect the REST of her life.  Take time to get another opinion.  You may find there is another approach that will leave her with fewer lasting effects. 

    I had an HPV tumor at the base of my tongue. It was 1.9 cm in size.  I had five affected nodes.  No surgery.  33 Radiation and 2 Chemos.  It has been six months since I finished my treatment.  My PET scan came back clear of all cancer recently.  Do you know the size of her tumor?  How far along is her pregnancy?

    Next, nutrition will play a HUGE role in her recovery.  Most people lose very LARGE amounts of weight through this treatment.  I lost only nine lbs, and no lean muscle mass.  Taking an integrative approach was key in my journey.  The doctors have most people on a diet of ensure/jevity in a feeding tube throughout the process and recovery.  It was my experience that using real food in my tube was very helpful to my body.  I would be happy to share my dietary information with you when you are ready for it.

     I have had an EPIC recovery and in large part I think it was because I never lost a lot of weight and ate really nutritious foods along with taking cancer fighting herbs.  Don't get me wrong.....It was still very dfficult and I was really sick but I believe my suffering was minimized.

    I elected to get a feeding tube before the treatment began and that was a really good decision.  Some people wait until they are really weak and have lost too much weight and have no choice.  Better to do it when your still strong and before you lose weight.

    My friends husband (in his fourties) was diagnosed with the same thing a year before me.  Also no surgery. His tumor was 4cm.   I learned so much from watching him go through it.  I was able to avoid a lot of suffering by learning from his journey.  Your right it is becoming somewhat common to see this cancer in younger people.

    Try to breathe and take it one day at a time.  If I can answer any questions or be of service to you, please feel free to contact me anytime.

    Shirley

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    welcome

    mm,

    Welcome to the H&N forum, I am very sorry to hear about your daughter.

    While your daughter may have (temporary) difficulty speaking she should be alert enough to communicate with her children.  I hope there is a caregiver(s) waiting in the wings ready to help her.  This will be a sometimes tough journey.

    It will really be a wait and see on her condition from the side effects  of treatments.

    I wish her the best, it sounds like she has a good team,

    Matt

  • Welcome to this very helpful,

    I've put a shorter reply :)

  • I've initially posted quite a

    I've initially posted quite a long reply, too much detail :) I want to shorten it, make it better. I had exactly the same surgery as your daughter has been recommended, plus radiotherapy.

     I want to be helpful, but I don't want it to sound "all about me".

     Just a quick comment:  For me, surgery was essential. I was really frightened about the surgery, but actually that was much easier than radiotherapy. I healed well. These non-HPV cancers can be very aggressive. In 6 weeks from diagnosis to surgery, there was almost nothing left of that side of my tongue - it was almost all invaded by tumour.

    Surgery is not removing healthy tongue - it is removing tumour, or tongue that contains tumour - it's not a nice thought, I know that, but it saved my life.

     Yes, get all your information, seek advice from the medical team, but please remember - TIME is of the essence. It took 6 weeks for my tumour to spread to my lymph nodes.

     I was speaking within 10 days of surgery, with some effort, but able to be understood. After 3 weeks, my speech was easy to produce and easy to understand. My surgery was December 2013, and I have been back at work since June. I have a slight lisp, that is all. And I'm a psychiatric nurse - so speaking is my livelihood! Most people don't notice. I even use the phone without any difficulty.

    Radiotherapy wasn't so easy, but again, you do get through it. And there are measures the medical team can input which help.

     Anyway, you have found here a very compassionate, supportive place.

     Estelle x x x

     PS: This photograph was taken in June. This was 6 months after surgery, 3.5 months after radiotherapy. As you can see, my "scars" have healed well. The right side was the neck dissection side. Yes, I do still have difficulties - not from the surgery, but from the radiotherapy, but both were necessary. Both were lifesavers for me. My smile is genuine :)

  • jackflash22
    jackflash22 Member Posts: 524 Member
    So sorry

    I'm so sorry you and your daughter have to go through this cancer and treatment. I had back of tongue cancer and three cancerous nodes in my neck. I found the build up to the treatment far worse to bear than the actual treatment. Once the plan was in place...first surgery, a neck dissection..then radiation. The surgery wasn't as bad as I expected with very little after pain. For some time after the surgery your neck is numb, feels like a piece of wood, that will last quite a while getting less numb as time goes by. I'm thirteen months from surgery now and still have some numbness around my ear. I haven't any pain. The radiation after affects vary with each person. After two weeks you start to lose taste buds and towards the end of treatment some radiation burns to the neck that can be like sunburn. There are creams and lotions to help. The throat and mouth can become sore.  I had a PEG tube fitted in my stomach before rads so I could continue to feed. I don't know what the procedure would be with your daughter because of her pregnancy. If you read the super threads at the top of the page it goes step by step what to expect during treatment. Everyone of us is slightly different, looking back on mine, it wasn't as bad as I expected and was soon over. I didn't have chemo. The scars are barely visible. After my trache was removed from my throat I could speak normally although I did lose my voice for two weeks after rads but it came back, not everyone loses their voice. I found the thing I hated the most was mucous every one gets  that. I feel great now, I do everything I use to do before and feel normal. What sounds like endless treatment goes by much quicker than you imagine. You will probably feel worse than your daughter she will be strong for her children and coming baby. In a few weeks you'll look back and say thank GOD that's over.

  • momo's momma
    momo's momma Member Posts: 3
    Your replies

    Wow, now I get the power of these discussion boards! thank you ALL for your replies. Just that small amount of information and encouragement from folks who have already been through this is huge. 

    Thank you for your advice about second opinions and surgery, Shirley. Your story is so encouraging. Her tumor is large, 4x5 cm, perineural, and very 'aggressive'. She had a biopsy on Oct 17th where they removed a pretty good size chunk of the tumor and it has grown back to 4x5 cm in 2 weeks. We have also reviewed quite a bit of the research and case studies on situations similar to hers and are comfortable with surgery as her first line of treatment. One study we read was on pregnant women with TSCC and, while it was only on 4 women, the ones who chose no surgery and less aggressive treatment because of the risk to the fetus did not survive. she and her husband want it out of there! 

    She is 'vegan'. I say that very tongue in cheek (no pun intended!) because they don't stick to it very strictly but I know she is going to want to avoid commercially prepared formulas if she can, so any tips or recipes on food would be great. I'm going to message you my contact info if that's okay. And 50 is supposed to be a great time in our lives. I'm so sorry you are dealing with this. 

    Matt, thank you. She has a good care team set up. Her husband will be able to take off work for 12 weeks and my younger daughter, her sister, who she is incredibly close to, will be able to stay with and care for her for the duration. I will be there for about 2 weeks after surgery and then able to go back and forth as needed. I'm a nurse, which is both a blessing and a curse in situations like this, but I'm an administrator now and when I was doing patient care I was a pediatric nurse, so this is all new to me. 

    The info about communication was so helpful. That gives me a much better idea about what to expect. And I keep hearing about mucous! What is the issue with it?  Increased amount? Thickness? I'm guessing all of the above... And is that from the radiation? 

    Again, thank you all! I don't feel quite so alone knowing we have this resource. 

    Laurie 

  • Sailor123
    Sailor123 Member Posts: 97
    Estelle_H said:

    I've initially posted quite a

    I've initially posted quite a long reply, too much detail :) I want to shorten it, make it better. I had exactly the same surgery as your daughter has been recommended, plus radiotherapy.

     I want to be helpful, but I don't want it to sound "all about me".

     Just a quick comment:  For me, surgery was essential. I was really frightened about the surgery, but actually that was much easier than radiotherapy. I healed well. These non-HPV cancers can be very aggressive. In 6 weeks from diagnosis to surgery, there was almost nothing left of that side of my tongue - it was almost all invaded by tumour.

    Surgery is not removing healthy tongue - it is removing tumour, or tongue that contains tumour - it's not a nice thought, I know that, but it saved my life.

     Yes, get all your information, seek advice from the medical team, but please remember - TIME is of the essence. It took 6 weeks for my tumour to spread to my lymph nodes.

     I was speaking within 10 days of surgery, with some effort, but able to be understood. After 3 weeks, my speech was easy to produce and easy to understand. My surgery was December 2013, and I have been back at work since June. I have a slight lisp, that is all. And I'm a psychiatric nurse - so speaking is my livelihood! Most people don't notice. I even use the phone without any difficulty.

    Radiotherapy wasn't so easy, but again, you do get through it. And there are measures the medical team can input which help.

     Anyway, you have found here a very compassionate, supportive place.

     Estelle x x x

     PS: This photograph was taken in June. This was 6 months after surgery, 3.5 months after radiotherapy. As you can see, my "scars" have healed well. The right side was the neck dissection side. Yes, I do still have difficulties - not from the surgery, but from the radiotherapy, but both were necessary. Both were lifesavers for me. My smile is genuine :)

    Surgery

    Hi Estelle:

    Thank you for sharing.  I never have understood why some people need surgery and others do not.  I'm so glad it saved your life.  You look great for being out only six months.  I'm so happy to hear your able to work and speak normally.

    Shirley

  • Sailor123
    Sailor123 Member Posts: 97

    Your replies

    Wow, now I get the power of these discussion boards! thank you ALL for your replies. Just that small amount of information and encouragement from folks who have already been through this is huge. 

    Thank you for your advice about second opinions and surgery, Shirley. Your story is so encouraging. Her tumor is large, 4x5 cm, perineural, and very 'aggressive'. She had a biopsy on Oct 17th where they removed a pretty good size chunk of the tumor and it has grown back to 4x5 cm in 2 weeks. We have also reviewed quite a bit of the research and case studies on situations similar to hers and are comfortable with surgery as her first line of treatment. One study we read was on pregnant women with TSCC and, while it was only on 4 women, the ones who chose no surgery and less aggressive treatment because of the risk to the fetus did not survive. she and her husband want it out of there! 

    She is 'vegan'. I say that very tongue in cheek (no pun intended!) because they don't stick to it very strictly but I know she is going to want to avoid commercially prepared formulas if she can, so any tips or recipes on food would be great. I'm going to message you my contact info if that's okay. And 50 is supposed to be a great time in our lives. I'm so sorry you are dealing with this. 

    Matt, thank you. She has a good care team set up. Her husband will be able to take off work for 12 weeks and my younger daughter, her sister, who she is incredibly close to, will be able to stay with and care for her for the duration. I will be there for about 2 weeks after surgery and then able to go back and forth as needed. I'm a nurse, which is both a blessing and a curse in situations like this, but I'm an administrator now and when I was doing patient care I was a pediatric nurse, so this is all new to me. 

    The info about communication was so helpful. That gives me a much better idea about what to expect. And I keep hearing about mucous! What is the issue with it?  Increased amount? Thickness? I'm guessing all of the above... And is that from the radiation? 

    Again, thank you all! I don't feel quite so alone knowing we have this resource. 

    Laurie 

    Life

    Hi Laurie:

    I'm so glad to hear you have a medical background and that you all feel good about the plan going forward.  That is so important.  I'm also happy to hear she and her husband are aware of the benefits of a healthy diet.  

    She is going to need the help of her husband and sister.  I think there was a three month period where I barely got out of bed.  My husband made the concoction we put in my feeding tube as I didn't even have the strength to do that.

    There were so many things that were simple but oh so helpful to me. (None of which the doctors knew about.)  For instance I put prune juice directly into my feeding tube when needed.  It totally fixed the problem with no medicine or side effects.  With all the narcotics prescribed this may become necessary.  At one point I got so low on sodium (near the end of radiation) (this is very common) and instead of using RX that had side effects I put an ounce of pickle juice a day for one week into my PEG tube and my sodium levels were normal within a week.  This was confirmed by bloodwork.  With her being pregnant these things may prove especially helpful.  Its fascinating that there is a natural remedy for most things but our western society is quick to turn to RX medication instead.  The natural remedies don't usually have side effects and often do the job just as well.  I did all the conventional treatment that was recommended but found it enormously helpful to integrate natural remedies whenever possible.

    If she doesn't have a vitamix, I highly recommend getting one.  We made a smoothy that I injected into my PEG in it.  Part of why I retained my lean muscle mass was due to what we put in it.  I bought cases of a product called Robin Gentrys Liquid Hope online.  It is a product made for feeding tubes comprised of real organic food.  (Peas, garbonzo beans etc.)  I found this to be a great alternative to formula made in a lab somewhere.

    As for the mucous.......Its just a bummer but a small price to pay for life. I avoid dairy in large quantities because that seems to really help me.  I was a cottage cheese lover during recovery but quickly realized that it wasn't worth it.

    She is so young, my guess is that she will bounce back faster than those of us who are older.  Given that she is vegan, i'm guessing she is thin to begin with.  At one point my 24 year old daughter insisted that I start injecting a few cans of jevity a day, just for the calories.  It worked.  Don't let her lose too much weight.  Whenever I started to lose too much I immediatly started to feel really weak.

    I know its all so overwhelming.  One day at a time.  Someone on the thread said the treatment goes quickly.  I found that to be very true.  It is a brutal protocal but over pretty quickly.  There were days I cried and cried and felt like it would never end.  Here I am six months after treatment and its already fading into the back of my memory.  My saliva production is returning and my ability to eat more things continues to grow.

    On my bio I wrote a short piece about my experience (Under expresssions).  She might find it helpful to read in terms of viewing the whole experience.  (Mask, chemo etc.)

    Best of luck to you.  We are all in your corner.

    Shirley

  • KTeacher
    KTeacher Member Posts: 1,103
    So sorry

    It sounds like you have a good team in place.  I can't help you with the pregnancy part but the first time I went through this our twin grandsons sived with us.  The boys were 2 1/2, on let everyone know the grandma had an owie, the other couldn't look at me but, he would turn aroung about 5 feet away from me and back up so he could sit on my lap.  Truthfully, I probably didn't have much interaction with them during treatment.  They seemed to understand that when I was in the bedroom, I couldn't play.  They would run in in the evening before there bath for a quick hello and cuddle.  I didn't push them to be around me and I let them be hones with their feelings.

    Superthread:  check over the superthread, good resource for before, during and after treatment.

    Food:  Hondo has whatever his wife makes for a meal, just blends it up.  You might want to check out Rebecca Katz, chef well trained in H & N cancer patients.  She has a great website and a wonderful cookbook.  Any of her healty recipes could be blended up for tube feeding or liquid meals.  You might see if there are friends or family that might help in making meals ahead for the family and things that you daughter will be able to eat.  PROTEIN is very important.  I didn't know about it the first time and much of my weight loss was muscle loss, very slow to build back up.

    Dentist:  Get her to the dentist.  Any problem teeth need to get taken care of before radiation treatment begins.

    Give her and her husband the site and stay in touch.  We are a very helpful and encouraging group.

  • KTeacher said:

    So sorry

    It sounds like you have a good team in place.  I can't help you with the pregnancy part but the first time I went through this our twin grandsons sived with us.  The boys were 2 1/2, on let everyone know the grandma had an owie, the other couldn't look at me but, he would turn aroung about 5 feet away from me and back up so he could sit on my lap.  Truthfully, I probably didn't have much interaction with them during treatment.  They seemed to understand that when I was in the bedroom, I couldn't play.  They would run in in the evening before there bath for a quick hello and cuddle.  I didn't push them to be around me and I let them be hones with their feelings.

    Superthread:  check over the superthread, good resource for before, during and after treatment.

    Food:  Hondo has whatever his wife makes for a meal, just blends it up.  You might want to check out Rebecca Katz, chef well trained in H & N cancer patients.  She has a great website and a wonderful cookbook.  Any of her healty recipes could be blended up for tube feeding or liquid meals.  You might see if there are friends or family that might help in making meals ahead for the family and things that you daughter will be able to eat.  PROTEIN is very important.  I didn't know about it the first time and much of my weight loss was muscle loss, very slow to build back up.

    Dentist:  Get her to the dentist.  Any problem teeth need to get taken care of before radiation treatment begins.

    Give her and her husband the site and stay in touch.  We are a very helpful and encouraging group.

    Protein is vital for wound

    Protein is vital for wound healing, (will help with both surgery and radiotherapy wounds).

    I have found Quorn blends much more smoothly than meat - and it's an excellent source of protein. She'll probably appreciate this being vegan/veggie.

    If she will eat eggs, they can be boiled and blended into soups - again adding the precious protein!

    I wish you all the very, very best. Family and friends are the golden threads which weave a rope that will carry you through this.

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N group

    Welcome to the group and sorry you need to be here. You are worried about the children but they are so resilient. I told my Grandchildren before I had the surgery. I had a full laryngectomy and I have a hole in my neck I breath through. I didn't want to scare them when they saw me so I told them exactly what was going to happen. When I came home I was still not alowed to talk for 17 days, amd had an open hole in my neck. They had no problem with it at all. They were 4 & 5 years old. The youngest keept wanting to see the hole and would say, it's looking better and getting smaller.[which it wont get smaller] Afetr a few days, they don't even think about it.

    Remember we are open 24/7 and if you need to vent feel free to. We have and we all do understand what you are feeling and going through. Will add you and your daughter to my prayer list. Stay strong and believe. I do know someone with a full laryngectomy and full glossectomy and he can talk.  Keep the fath.

    Bill

  • donfoo
    donfoo Member Posts: 1,771 Member
    welcome to csn

    Welcome,

    You've arrived at a good time as things are still early days. It is so sad about the cancer but wonderful to hear your situation is top grade. Great CCC with specialists in pregnancy and cancer, you being a nurse is great, close and supportive family, all of it. This site can offer some good practical suggestions but as you know we are not doctors and have zero details about her case so rely on the specialists advise. The added complexity of being pregnant is something that requires extra amounts of expertise on an already complicated case. Take comfort she is at a CCC. Only practical advise I can offer is something does not feel right get a second opinion from an independent tumor board to better understand any conflicting opinions. As you know there can be differing yet equally effective outcomes so if there ary doubts get them into the light. Good luck, Don

  • momo's momma
    momo's momma Member Posts: 3
    Additional info

    Thank you all so much.  The last two days have been very tough. Morgan saw her surgeon on Mon. And because of the size of the tumor they are going to have to do bilateral neck dissection and go in anteriorly, between chin and trach to get to the back of the tongue. This sounds so extreme and she is terrified. She heard a story yesterday of a girl with the same situation who died within a year.  Morgan is in flight or fight mode now and because she can't do either, she is shutting down. She's just scared to death. 

    she is feeling very out of control and I don't know how to help her other than the usual motherly wisdom. She has a carepage and has hundreds of people praying and cheering for her, but she can't even look at it. She's usually a rock and I KNOW she can do this. She's just absolutely terrified and afraid that she's going to die like this other young lady did. 

    I need to help get her back on track and in a better frame of mind before surgery on Thursday. Any stories of hope out there that I can share with her? We need some right now. 

    And prayers would be greatly appreciated. 

    Thank you, Laurie. 

  • KTeacher
    KTeacher Member Posts: 1,103

    Additional info

    Thank you all so much.  The last two days have been very tough. Morgan saw her surgeon on Mon. And because of the size of the tumor they are going to have to do bilateral neck dissection and go in anteriorly, between chin and trach to get to the back of the tongue. This sounds so extreme and she is terrified. She heard a story yesterday of a girl with the same situation who died within a year.  Morgan is in flight or fight mode now and because she can't do either, she is shutting down. She's just scared to death. 

    she is feeling very out of control and I don't know how to help her other than the usual motherly wisdom. She has a carepage and has hundreds of people praying and cheering for her, but she can't even look at it. She's usually a rock and I KNOW she can do this. She's just absolutely terrified and afraid that she's going to die like this other young lady did. 

    I need to help get her back on track and in a better frame of mind before surgery on Thursday. Any stories of hope out there that I can share with her? We need some right now. 

    And prayers would be greatly appreciated. 

    Thank you, Laurie. 

    Momma's Hugs

    So sorry she had to hear a bad story just before her surgery.  You are correct, we are not in control for awhile.  All you can do is be there and give her hugs.  We all get through this differently.  I would make sure that she has a picture of her beautiful children with her.  She probably has an IPhone or some such (I still use the old flip phone!).  Her surgery will be long, is someone going to be at the hospital with you, hopefully her husband.  If it helps at all, my husband needed to have his neck fused and they went in through the front of his neck.  I know, not cancer, but it was still trying for us.  You might purchase a few lightweight scarves for her to lightly wrap around her neck so the children won't be frightened.  It is amazing how well we heal after treatment is over.

  • wmc
    wmc Member Posts: 1,804

    Additional info

    Thank you all so much.  The last two days have been very tough. Morgan saw her surgeon on Mon. And because of the size of the tumor they are going to have to do bilateral neck dissection and go in anteriorly, between chin and trach to get to the back of the tongue. This sounds so extreme and she is terrified. She heard a story yesterday of a girl with the same situation who died within a year.  Morgan is in flight or fight mode now and because she can't do either, she is shutting down. She's just scared to death. 

    she is feeling very out of control and I don't know how to help her other than the usual motherly wisdom. She has a carepage and has hundreds of people praying and cheering for her, but she can't even look at it. She's usually a rock and I KNOW she can do this. She's just absolutely terrified and afraid that she's going to die like this other young lady did. 

    I need to help get her back on track and in a better frame of mind before surgery on Thursday. Any stories of hope out there that I can share with her? We need some right now. 

    And prayers would be greatly appreciated. 

    Thank you, Laurie. 

    It is scarry....But it will be ok.

    When a doctor comes in and tells you that you have cancer, your mind shuts down and you think, why, how, and it just goes on from there. At night when you "try" to sleep your mind takes off again. First the why and how, doesn't matter. What does matter is what are you going to do to fight like hell to beat this. Mine was not BOT but SCC larnyx. They would do the neck desseciton to make sure the get the lymph glands. Mine were all clean but they removed 86 to make sure "if" it ever came back it can't go there. My side effect from that is, the left side of my neck is numb. Not really a big deal. Now having my larnyx removed they had to cut me from ear to ear. Not trying to upset of scare you, just telling you the truth. I have a small scar on the left side olny, again no big deal. Oh, I was able to get back to work full time in 10 weeks and I had to learn to swallow and eat and talk all over. I'm 63 and stage 3 COPD and a few other things as well. There was only five people that thought I would live, and my son and brother didn't think I would. I new I would be ok, as soon as they did the surgery. I am Cancer free for 13 months and doing just fine.

    Your daughter has many things going for her. Her age is in her favor. Being pregnant will be taken into consideration. She needs to keep eating and stay hydrated. Her imune system is in good shape. AS for survival she has very good numbers. Don't try to Google it because they sample it so many differant ways. Now the only reason it is stage 4 is because it went to two lymph glands so it really is not as bad as it sounds. 

    There are many on this site that did have BOT SCC and all survived it. Just get an attitude you will beat this and you will. She will have many ups and downs, but with support from family and we will be here as well, she can beat this.

    Bill

  • jackflash22
    jackflash22 Member Posts: 524 Member

    Additional info

    Thank you all so much.  The last two days have been very tough. Morgan saw her surgeon on Mon. And because of the size of the tumor they are going to have to do bilateral neck dissection and go in anteriorly, between chin and trach to get to the back of the tongue. This sounds so extreme and she is terrified. She heard a story yesterday of a girl with the same situation who died within a year.  Morgan is in flight or fight mode now and because she can't do either, she is shutting down. She's just scared to death. 

    she is feeling very out of control and I don't know how to help her other than the usual motherly wisdom. She has a carepage and has hundreds of people praying and cheering for her, but she can't even look at it. She's usually a rock and I KNOW she can do this. She's just absolutely terrified and afraid that she's going to die like this other young lady did. 

    I need to help get her back on track and in a better frame of mind before surgery on Thursday. Any stories of hope out there that I can share with her? We need some right now. 

    And prayers would be greatly appreciated. 

    Thank you, Laurie. 

    Surgery

    the surgery is quite a long process, your daughter of course will be oblivious to all this and wake up when it's over. She will look worse than she feels. I was shocked when I saw myself after the op with the tubes for feed and drains etc but surprisingly there was very little pain. i had a pain relief machine next to me and had a hand held button to press if I needed it. Within eight weeks I had recovered, the scars had disappeared to just thin white lines. I had a trache in my throat about  a week and had to have a dietician to teach me how to swallow without the food  going the wrong way. After that I felt normal again. I did get a lot of mucous with the trache but the nurse was there to drain it out. Once the op is over she's halfway there. The staff will keep her comfortable and won't let her suffer any pain. You will be the one that suffers, you'll feel helpless but remember this all looks worse than it is. I spent the visitor visiting time reassuring my daughter I'm OK. I then went through six weeks..five days a week radiotherapy. That wasn't as bad  as I thought it would be. I did get side affects but nothing I can't cope with. My prayers are with you and your daughter. 

  • Bart T
    Bart T Member Posts: 62 Member
    WISHING YOU THE BEST OUTCOME

    I’m always sorry to hear of a person with a new diagnosis, especially one involving a young person with young children.

    I had tongue cancer and underwent a hemiglossectomy, and neck dissection (on only one side), and then went through 30 radiation treatments and a little chemo. Now a bit over two years out from my last treatment and am all clear. I do suffer from some rather annoying side effects from the radiation, but I eat and speak normally, and do everything I did before the cancer with no limitations or restrictions, and am back to enjoying life.

    I’ve never really become expert on all the variations of the disease and treatments and can only speak of my own experience, realizing that everyone’s experience is unique. Perhaps there are some varieties of hemiglossectomies, and perhaps your daughter’s is more severe than mine, but in my case there was no flap involved. As I understand it the surgeon did a reconstruction of my tongue as part of the same procedure. Combined with the neck dissection, the surgery was under three hours.

    I too, was very concerned about my ability to speak and eat after the surgery. Within several weeks I was talking 100% normal, and eating just about everything. For me the roughest part was the radiation, but I did get through it, and I’m sure your daughter will too.

    I sent a couple of videos slideshows to my friends after the surgery. The first was done 6 days after the surgery, the second about 5 weeks after the surgery, but before the radiation. Although the content reflects my rather sick sense of humor which you may want to disregard, the videos do give a good idea as to how I looked and sounded at those two intervals. Here are the links:

    http://www.youtube.com/watch?v=5-PVrJCK01s

    http://www.youtube.com/watch?v=UYAQrAbAhUw

     I did the radiation without any type of feeding tube, but I wasn’t pregnant, and was carrying a few pounds that I was able to spare. I wish you both the best of luck. 

  • donfoo
    donfoo Member Posts: 1,771 Member

    Additional info

    Thank you all so much.  The last two days have been very tough. Morgan saw her surgeon on Mon. And because of the size of the tumor they are going to have to do bilateral neck dissection and go in anteriorly, between chin and trach to get to the back of the tongue. This sounds so extreme and she is terrified. She heard a story yesterday of a girl with the same situation who died within a year.  Morgan is in flight or fight mode now and because she can't do either, she is shutting down. She's just scared to death. 

    she is feeling very out of control and I don't know how to help her other than the usual motherly wisdom. She has a carepage and has hundreds of people praying and cheering for her, but she can't even look at it. She's usually a rock and I KNOW she can do this. She's just absolutely terrified and afraid that she's going to die like this other young lady did. 

    I need to help get her back on track and in a better frame of mind before surgery on Thursday. Any stories of hope out there that I can share with her? We need some right now. 

    And prayers would be greatly appreciated. 

    Thank you, Laurie. 

    the track

    Hi,

    One certain thing about this trip is NOBODY knows where it winds and ends up for certain. When the mind gets out of control trying to contemplate all the possibilities, overload and shutdown are pretty natural events. One of the common techniques is to focus very hard on one day at a time once you have the really basic stuff sorted out.  Check off the obvious items such as who is caring for the kids and going to be helping running around for groceries and meds and such. Cllear off all the really basic stuff for a few weeks out then just narrow the focus to one day at a time.

    If going to the Internet stay only on sites that are completely supported by science. This is a special and unique place but stay on hospital or government sites. Mediation, yoga, or any other relaxing techniques. Get some anti-anxiety meds - very common. Some some pot - do whatever to get the mind calm and focused.

    One thing for certain - she will get through this. Good luck. Don

  • Sailor123
    Sailor123 Member Posts: 97
    Big day....

    Hi.

    Just want you to know I'm thinking of you and your family on this most frightening Day. This will be a big hurdle for you all to get past. After today she will be one step closer to wellness. Prayers and hugs to you .

  • PJ47
    PJ47 Member Posts: 376

    Additional info

    Thank you all so much.  The last two days have been very tough. Morgan saw her surgeon on Mon. And because of the size of the tumor they are going to have to do bilateral neck dissection and go in anteriorly, between chin and trach to get to the back of the tongue. This sounds so extreme and she is terrified. She heard a story yesterday of a girl with the same situation who died within a year.  Morgan is in flight or fight mode now and because she can't do either, she is shutting down. She's just scared to death. 

    she is feeling very out of control and I don't know how to help her other than the usual motherly wisdom. She has a carepage and has hundreds of people praying and cheering for her, but she can't even look at it. She's usually a rock and I KNOW she can do this. She's just absolutely terrified and afraid that she's going to die like this other young lady did. 

    I need to help get her back on track and in a better frame of mind before surgery on Thursday. Any stories of hope out there that I can share with her? We need some right now. 

    And prayers would be greatly appreciated. 

    Thank you, Laurie. 

    I feel for you and your daughter, this is too much

    Reading your post made me reply which I have not been on this site for some months due to going back to work (Hospice) and having to use the computer so much that I want to avoid it when off from work.  

    Can identify with your daughter as I am the "rock" matriarch, care taker, etc and when I was about to go in for surgery which was robotic for the base of tongue tumor (2cm) and then selective neck dissection (22 nodes), I began to shut down and go into what I call survival mode.  Perhaps it is what one has to do  to get through this.  Yes it is terrifying and wierd as this may sound, I prepared myself first by visiting my daughter and grandchildren before surgery and then a few days before, I viewed a website "more than medicine" a medical mission to Africa that my surgeon is involved in and viewing the people and their horrible advanced tumors helped me put my situation in a better perspective.

    I also feel for you as a mother and medical professional how very difficult this is for you.  You certainly can advocate for her, and support her, but beyond that the angst must be overwhelming.

    This will be a very difficult time for her, but she can do it with a lot of love and support and a great team.  

    She and you are in my prayers and thoughts and I am sorry I did not read this until last night.

    Praying all went well for her today and for all her tomorrows,

    PJ