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

jackflash22

I hope by now your daughters

I hope by now your daughters op is over and she's recovering well. Look after yourself, we are all thinking of her and wish her well.....xxx

phrannie51

momo's momma said:

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 girl....

and I can relate to the mind spinning out of control....fear puts our heads on a hampster wheel that goes round and round leading nowhere but keeps feeding the fear.  The girl she heard about is the exception....yes it does happen, but the majority of us are here to tell the tale.  At the beginning of treatment everything is beyond our control....we don't even understand the language.  It's like being parachuted into a foriegn country where we don't understand the culture or the language, and told to find our way out.  But as treatment progresses, we do pick up on what is being said....we begin to understand our part of getting through it, and moving on to getting well.  She will begin to see her path.  She will be able to take an active roll in her fighting the beast, and that brings comfort...

This is a one day at a time deal....all she has to do is get through this day....tomorrow will be hear soon enough.  Nobody...even healthy people....can start speculating the future and not be filled with fear.....it's a human condition.  But we can teach ourselves to stay in the day.....one foot in front of the other.....get past the gravel on the hiway of life, knowing that pavement is just around the corner. 

I'm glad she has her mom (I would have given anything to have had mine).....She can do this....it's hard but can be done (and has been done by thousands)....she can do it too!

As an old friend from here told me in the beginning...BELIEVE.  Stick close to this forum....there is a lot of knowledge and experience here....we know things even the Dr.'s don't know....this place is the best place on the internet.

p

Anonymous7/6/2023

Bart T said:

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. 

How is your saliva now Bart?

How is your saliva now Bart?

jackflash22

Bart T said:

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. 

2014-11-09great video, you

2014-11-09great video, you have a fine sense of humour. Love the accent. 

kthompson10

Stay Strong!!!

 

Hi, I hope everything went well with your daughters surgery! I know that this is a very SCARY time for her, you and the rest of your family! 

 

I hope this helps to give her (and you) a little bit of piece of mind... A little over a year ago (age 32) at 12 weeks and 1 day pregnant I was diagnosed with a malignant tumor on my paratid gland (at UofM) and had surgery exactly one week later.  I received all of my prenatal care there for the next three months, and underwent 30 radiation treatments too.  The medical team I had was phenomenal!!! And I now have a beautiful and healthy baby girl!  I just celebrated my one year anniversary of my last treatment on the 8th.

 

I'm not sure who your daughter is seeing but Dr. Marentette (Otolaryngology) did my surgery and follow-up and Dr. Eisbruch (Radiation Oncology) did my radiation treatment.  As explained to me the second trimester is the safest time of a pregnancy to do any procedure, they did surgery (six hours) one day into my second trimester.  That went really well for me and I was able avoid pain killers afterward.  As a mother, my concern about everything I was about to do was not about how it would affect me but it would affect my baby.  The radiation treatment took place a couple weeks later that they would have normally started it because they took lots of measurements of me and then essentially created a dummy to put through the entire course of treatment that they wanted to give me while measuring and making adjustments for the growth of my baby to see what potential exposure my baby would receive without any precautions made.  This was to ensure her safety (tell your daughter to make sure to get a rolled towel for under her back because laying flat on the hard table will get pretty tough by the time she has her last treatment). 

 

You are right to be concerned about nutrition while she undergoes this treatment as I lost all taste and appetite.  I had to make myself eat for the baby, but one of the foods that I tolerated best was yogurt (I skipped the light stuff and had full fat for the calories).  Sweet and salty were one of the last tastes to go so try making meals and snacks catering to those tastes. Make sure she takes her prenatals as that will help to ensure that at least the baby is getting everything she/he needs. 

 

I cannot answer some of your questions about the radiation treatment and surgery as mine was a little bit different and everyone tolerates it differently. What I did find helpful was I used the same cream I was using on my belly for stretch marks (coco butter) on my my neck and experienced very minimal redness and tenderness compared to others who were having similar treatment as myself. 

 

How her children will cope is really dependent to each child and their personality.  I live in the UP and was lucky enough to have family in that area that I could stay with during treatment. They helped me out tremendously, especially with my son (2.5yrs at the time).  My husband was able to take some time off but we could not afford for him to take three months off, so he was traveling back and forth on his days off to help take care of us.  My son had a hard time following my surgery (he stayed at grandmas for a week) as it was the longest time he had ever gone without seeing me and not understanding that I could not pick him up.  The time we were at UofM for radiation (6 weeks) he was with me as my brother has kids his age that his MIL watches so they were able to help out, and he did well there for the first couple of weeks and then he started to have night terrors and overall just a hard time.  I feel that this was mostly because communication with dad was through Skype while he was back home and because 6 six weeks is just a long time to be away from home, his bed and his routine.

 

I hope that this helps you and your daughter! Please feel free to ask me if you have any questions regarding my experience. I wish you the best of luck and stay strong!!!

 

PS - For your daughter, a piece of advice my mom (a 23 year breast cancer survivor) gave me when I got my diagnosis...  "You were only ten years old when the Dr told me I had cancer and all I could think about was missing out on watching my kids grow up and what would happen to you and now I am expecting grandchild number 12 and 13, cancer IS beatable and your kids will give you incredible strength that you never knew you had!" 

 

Your daughter is a strong woman and will valiantly fight this beast!!!

 

KTeacher

kthompson10 said:

Stay Strong!!!

 

Hi, I hope everything went well with your daughters surgery! I know that this is a very SCARY time for her, you and the rest of your family! 

 

I hope this helps to give her (and you) a little bit of piece of mind... A little over a year ago (age 32) at 12 weeks and 1 day pregnant I was diagnosed with a malignant tumor on my paratid gland (at UofM) and had surgery exactly one week later.  I received all of my prenatal care there for the next three months, and underwent 30 radiation treatments too.  The medical team I had was phenomenal!!! And I now have a beautiful and healthy baby girl!  I just celebrated my one year anniversary of my last treatment on the 8th.

 

I'm not sure who your daughter is seeing but Dr. Marentette (Otolaryngology) did my surgery and follow-up and Dr. Eisbruch (Radiation Oncology) did my radiation treatment.  As explained to me the second trimester is the safest time of a pregnancy to do any procedure, they did surgery (six hours) one day into my second trimester.  That went really well for me and I was able avoid pain killers afterward.  As a mother, my concern about everything I was about to do was not about how it would affect me but it would affect my baby.  The radiation treatment took place a couple weeks later that they would have normally started it because they took lots of measurements of me and then essentially created a dummy to put through the entire course of treatment that they wanted to give me while measuring and making adjustments for the growth of my baby to see what potential exposure my baby would receive without any precautions made.  This was to ensure her safety (tell your daughter to make sure to get a rolled towel for under her back because laying flat on the hard table will get pretty tough by the time she has her last treatment). 

 

You are right to be concerned about nutrition while she undergoes this treatment as I lost all taste and appetite.  I had to make myself eat for the baby, but one of the foods that I tolerated best was yogurt (I skipped the light stuff and had full fat for the calories).  Sweet and salty were one of the last tastes to go so try making meals and snacks catering to those tastes. Make sure she takes her prenatals as that will help to ensure that at least the baby is getting everything she/he needs. 

 

I cannot answer some of your questions about the radiation treatment and surgery as mine was a little bit different and everyone tolerates it differently. What I did find helpful was I used the same cream I was using on my belly for stretch marks (coco butter) on my my neck and experienced very minimal redness and tenderness compared to others who were having similar treatment as myself. 

 

How her children will cope is really dependent to each child and their personality.  I live in the UP and was lucky enough to have family in that area that I could stay with during treatment. They helped me out tremendously, especially with my son (2.5yrs at the time).  My husband was able to take some time off but we could not afford for him to take three months off, so he was traveling back and forth on his days off to help take care of us.  My son had a hard time following my surgery (he stayed at grandmas for a week) as it was the longest time he had ever gone without seeing me and not understanding that I could not pick him up.  The time we were at UofM for radiation (6 weeks) he was with me as my brother has kids his age that his MIL watches so they were able to help out, and he did well there for the first couple of weeks and then he started to have night terrors and overall just a hard time.  I feel that this was mostly because communication with dad was through Skype while he was back home and because 6 six weeks is just a long time to be away from home, his bed and his routine.

 

I hope that this helps you and your daughter! Please feel free to ask me if you have any questions regarding my experience. I wish you the best of luck and stay strong!!!

 

PS - For your daughter, a piece of advice my mom (a 23 year breast cancer survivor) gave me when I got my diagnosis...  "You were only ten years old when the Dr told me I had cancer and all I could think about was missing out on watching my kids grow up and what would happen to you and now I am expecting grandchild number 12 and 13, cancer IS beatable and your kids will give you incredible strength that you never knew you had!" 

 

Your daughter is a strong woman and will valiantly fight this beast!!!

 

Thank you

Thank you for checking in.   I know your input will be very helpful.  Please stay around.  We are a great group of survivor's and encouragers.

As a grandma going through treatment, my daughter came to visit with her 4 month old baby.  Michelle was a great help to my husband (this was my 3rd go around with 'c' but my first with chemo).  My daughter brought the baby into my room each morning, she was too young to notice I didn't have an eye.  Nap time was with me,  Very special time.

hwt

KTeacher said:

Thank you

Thank you for checking in.   I know your input will be very helpful.  Please stay around.  We are a great group of survivor's and encouragers.

As a grandma going through treatment, my daughter came to visit with her 4 month old baby.  Michelle was a great help to my husband (this was my 3rd go around with 'c' but my first with chemo).  My daughter brought the baby into my room each morning, she was too young to notice I didn't have an eye.  Nap time was with me,  Very special time.

Hope

Each of us was terrified, that is to be expected, even more so with your daughter's young age and family. I am a 3 time survivor, currently cancer free. I have found my surgeries easier on me than the chemo/radiation. My first surgery was 19 hours and much harder on my family than on myself. I didn't realize how important hope was until mine was taken away. Fortunately, we sought help at the Mayo Clinic and that hope was restored. My advice is always the same "take it as it comes and deal with it". Don't waste energy on worry about things that may never happen. My faith played a role also. I will whisper a prayer for your family.

Candi

debbiejeanne

momo's momma said:

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. 

Laurie, I'm just seeing

Laurie, I'm just seeing this.  I pray surgery went well and she is well on the road to healing.  please let her know that there are several people right here who have had the same dx and are here to tell their stories and encourage others going thru it.  i'm so very sorry for everyone that your family is going thru this but she WILL GET THRU THIS!  I will be keeping you and your family in my thoughts and prayers.  please update us on how she is doing when you get a moment.  God bless you all.

dj

robswife87

momo's momma said:

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 

U of M is one of the best

Your daughter is at one of the best hospitals for oral cancer. My husband is now 17 months out of treatment for Tonsil Cancer HPV+ Stage 4 and spread to lymph nodes on both sides of the neck. No surgery. it was all radiation and chemo. 

We had the best ENT, Oncologist and Radiation Oncologist on earth. Dr Eisbruch will make sure she and the baby will be fine. It will be a hard tough road but she will see the light at the end of the tunnel. She will need all the help she can get. She will be sick, tired and weak

Get a Vitamix blender. There are recipes all over the internet to make drinks and smoothies with great calorie and protien intakes. She can stay vegan. She can use seeds and protien powders, oils mixed in to get the calories up. The odds are she will be drinking most of her food. I put hemp seed oil in my husbands as 2 ounces gave 250 calories. We needed to stay away from the preparred nutritional drinks because of the sugar. He was diabetic.

On the main page of the forum is the Superthread. There are also great recipes and lots of information there to help everyone get through this ordeal

Prayers being sent up for successful treatment and fast healing

Sandy