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

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

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

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 

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 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 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.

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 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. 

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.

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. 

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. 

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. 

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

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. 

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