First post- DH has cancer

efeehan · January 2015

Hello Ladies!

First post… been lurking for a little while. I'm a FTM (17 weeks) and this week my DH was diagnosed with spindle cell sarcoma- a really rare connective tissue cancer. We haven't met with an oncologist yet- a general surgeon made the diagnosis. We thought it was a simple hernia. I am really struggling dealing with all of this. At my 16 week check up everything was fine besides the fact that I've lost weight. Anyone else gone through something like this while pregnant?

All my friends tell me I have to put myself & baby first which I get, but most of them are single and childless. My parents live 10 minutes away, and my mom has been stellar helping me clean the house and feed us when we are both zombies- he is in constant pain even with oxycodone and does not sleep more than a couple hours at a time. I am hoping the oncologist will refer us to counseling, but I didn't know if I should reach out to my OB for something to help with the anxiety and depression. Also, if anyone has any treatment referrals for sarcomas let me know. We are in NC, but with how rare this cancer is we are pretty sure out of state treatment is something we need to look into.

Sorry this is a debbie downer first post. But I feel like no one gets how crazy I feel with all these hormones!

bruunk · January 2015

My thoughts are with you! I agree with your friends, that you have to take care of you and baby, but that's also so you can be there as you can for DH. I'd totally talk to you OB about this, if only so they are aware of what some of your stressors are (my OB's office asks about my relationship and stress level every visit - maybe it's common, not sure). Sending you good thoughts - sorry I don't have more helpful information.

kendallapp · January 2015

My situation is TOTALLY different but I can relate- my mom has a very rare form of cancer that she has been battling for 2.5 years. Obviously it is my mom, not my hubby, and we got pregnant knowing that this was going to be a factor. But my mom is divorced so I have really been her main support through this, researched treatment options, etc. We ended up doing treatment across the state, which was tough but definitely the right move.

First of all, I am so sorry you are going through this. My only advice is with rare cancers, don't feel like you have to stick with your first oncologist. Some oncologists are essentially the general practitioners of the cancer world, whereas others have a specialty, so pick who you feel the most comfortable with and who knows the most about your specific situation. Definitely take care of yourself- I can speak from experience that you will NOT be a good support if you are depleted, and then factor pregnancy in. Let other people help you (sounds like you already are.) I found that most people didn't really know what to do to help but really wanted to, so I gave them "jobs" and that was a big help.

Finally, to ease your mind... I read all kinds of scary articles about stress during pregnancy and how terrible it is, and then finally found a great article about new research that shows that a strong parent/child bond in the first year of life essentially "undoes" any damage done by stress or depression during pregnancy. This helped me not stress about being stressed

Your family will be in my prayers, sorry for writing you a novel! Best of luck, the first stage (waiting for oncology, deciding on treatment) was the worst in my opinion. Everyone felt lots better once we had a plan of action.

aj1327 · January 2015

I'm so sorry that you are going through this. I agree about talking with your OB so at the very least he/she will know what you're going through. Prayers are being sent your way!

elbowpasta · January 2015

I'm so sorry you're going through this. I agree with PPs, definitely talk to your OB! This is a huge thing to go through NOT pregnant, it's definitely in your best interests to keep you and baby happy and healthy. I'll be thinking about you and your husband.

Bednarova · January 2015

Where are you in NC? I can ask DH (gen surg/surg onc md) where he'd go in your area. (he won't be home for a few hrs though)

Also, having watched my MIL go through treatment for lymphoma for the last 2.5yrs, depression is absolutely something to think about, the isolation of treatment alone is enough to cause major depression. And though he'd never admit it, FIL has some caregiver depression/anxiety, and now that she's in remission, he has a hard time letting her do things for herself or on her own. If you are feeling like you need help mental health wise, please ask for help.

I'm sorry that you have to go through this.

tiffbot1985 · January 2015

I am so sorry you guys are going through this. I hope all goes well with his diagnosis and treatment.

ohiodoxiemama08 · January 2015

I'm so sorry for all that you are going through. Please take care of yourself. Thoughts and prayers for you and your husband.

GASuzuki · January 2015

I am so sorry for the news. How is treatment? I can't imagine getting this news now. I hope all goes smoothly.

leenziepops · January 2015

Im so sorry you're in this situation. I cannot imagine how hard it would be. Just remember to look after yourself. A bit of weight loss is normal and your OB will tell you if it's a concern or not. I agree with PP's about telling your OB about this too. T&P's for you.

awheeler4311 · January 2015

I'm so sorry that you are going through this. I work for a large cancer center in Florida and would be happy to help in any way that I can! Just let me know.

sammyca · January 2015

Oh my heart just hurts for you. I was 25 weeks pregnant with my 2nd baby when my then toddler son was first diagnosed with a rare form of leukemia. We spent the next year and a bit living in the children's hospital. My daughter was born just down the hall (in the attached private adult hospital) and didn't really live in our house until she was 9 months old. In all honesty I don't know how we did it - we just got through it because we had to. I would say accept help in whatever way it is offered both now and once baby is born. You will absolutely know who your true loved ones are. Also talk to the hospital social worker (attached to your DH's oncology department probably) as they may have other supports you can utilise.
Thinking of you and hoping for all the best for your family. If I think of anything else, I'll post again.

dancegurl1118 · January 2015

I'm so sorry to hear about your husband's diagnosis. The stress of being pregnant is enough, this is just terrible to add on. You have brought up some great points yourself (counseling, dealing with anxiety, etc). I would definitely check into these. Also, don't feel guilty about accepting any help for you or your family now and after June. You will be in my thoughts and prayers. Again, I'm so sorry.

esampson1983 · January 2015

So sorry you are going through this. I don't have any advice that would differ from PPs but wanted to let you know that you and DH are in my thoughts!

KonaCoffeeBean · January 2015

I'm so sorry to hear that what you're going through. It's wonderful that your mother is so helpful I hope that you have others in your life that you can also rely on.

flbabychin · January 2015

I'm sorry that you're going through this while pregnant. I don't have any different advice, I'd just echo that telling your OB could be helpful so he/she knows what's going on in your life and can offer help or advice. I'll keep you in my thoughts and prayers.

sammyca · January 2015

Another thing I wanted to add (sorry!). I was terrified that my DD would be a really difficult baby because I was under so much stress during the pregnancy. Nothing could be further from the truth. She was the happiest most easygoing baby and just slotted in to our crazy life. Little babies are so adaptable.

janat1717 · January 2015

Thinking of you. I'm so sorry you have to go through that.

crikit83 · January 2015

So sorry to hear you're going through that. My DH and I did nursing and hospice care for my FIL a few years back. He went to Hillman Cancer Center in Pittsburgh, and did some experimental treatments that got him another four good years past his original oncologist's prognosis. FX that your husband is early stage and that they get a good treatment plan for him.

Talk to your OB about whatever treatment they decide for him, as there might be some precautions you need to take. Accept help from people, and accept that you'll need to just let some things go that aren't as important. People will totally understand, and we were just in head down crisis mode for the last six months of his life. We also found out that my MIL has aggressive bone cancer, the same week I found out we were expecting, and it's just a lot to juggle at once, mentally and physically. If your OB doesn't have a recommendation for counseling, your DH's doctor may.

Mama-Bear · January 2015

If you don't get a referral to a counselor from the oncologist, I would definitely seek one out on your own just to get some help/advice/encouragement of how to cope with treatment while pregnant/having a baby. Prayers to you and your husband, please keep us updated.

effthisnoise · January 2015

I'm also 17 weeks and my husband was diagnosed with a rare form of cancer (choroidal melanoma--a tumor in his right eye) back in September. Our case is very different from yours because he received radiation treatment in October and now the tumor is slowly starting to shrink, meaning it was somewhat successful. I say somewhat because he will have to get body scans every 4-6 months for the next five years to see if the cancer has metastasized elsewhere in his body. If he's clean for five years, he won't have to get the scans as often, but he'll still have to get them because something could pop up in 15 years and kill him. There's no real remission.

I do understand how you feel, though. September and October were shitty months even though I was happy to get pregnant. The treatment was scary (a radioactive plaque attached to his eye) even though we were at Johns Hopkins, one of the best hospitals for this. My husband is an unflappable guy and he was a rock about everything. I was the one breaking down. I kept imagining having to live my life without him and being a single parent. I worry more about health insurance and knowing what goes on with all our bills because what if I have to be responsible for everything?

Soon, this will become your new normal and you worry less often about these things...because he's still here. I remind myself that my husband could be hit by a bus tomorrow and that's just how life is. You don't get to choose.

The important thing is trying to be positive. A positive attitude goes a long way with cancer treatment. Even if you have to fake it, do your best. I'm sorry this was long, but please feel free to PM me anytime. I'll be praying for you guys.

erbear84 · January 2015

I am so sorry that you are going through this. If the oncologist doesn't have support services available, I'd definitely reach out to your OB for some. Your family will be in my thoughts and prayers!

JuneBug0611 · January 2015

Lurking from July but had to post. DH was diagnosed with a rare and aggressive form of cancer when DD was one year old. He had to do surgery, radiation, and chemo. Toughest year of our life, for sure. My best advice is to ask, very explicitly, for the help you need. People all want to help but don't know how. Set up a caregiver web site where people can sign up to help you out with specific tasks you list for specific days and times. We used Lotsa Helping Hands. We needed help with babysitting on treatment days and meals mainly, but also some random things like helping me transport our Christmas tree while DH was laid up after surgery. It was so important to get that help. Don't be too proud to ask for it.

Take care if yourself too. I always scheduled a massage for the third weekend of his chemo cycles, when he was feeling best so I could get away for a couple of hours. It was so important to have a couple of hours just to breathe and re center.

And be patient with your DH. He may change for a bit while he is in treatment or after, and that may be hard on you. But he will get through it and return to (somewhat) normal.

This is a lot to go through pregnant. But you will make it through. Big hugs and let me know if I can be of any help.

My DH just went in for another scan the other day and we are awaiting results. It is so scary, even now, especially now with another baby on the way. But we can't live in fear. T&Ps for you and your DH.

KimberlyandThor2014 · January 2015

So sorry you are going through this! Yes you need to take care of you and baby, but hubby will need his share of love and support too. Just make sure you balance yourself out and have support all around so that mama and daddy are getting what they need.

It's easy to give advice, but much harder to go through. I'm so so sorry. I hope that your road is as smooth as possible and that everything works out okay for you and your family. Please be sure to ask for help and support when you need it!

darvo · January 2015

Cancer is the worst, I'm so sorry life dealt you this, especially right now. I'll be thinking about you. Surround yourself with people who care about you and are willing to help you -- that's the only thing that got us through our personal cancer journey. You can do this. Sorry I don't have any advice, just know you're in my prayers.

littlechemist · January 2015

I'm so sorry, I don't have anything remotely helpful to add but wanted to say welcome to the J'15 boards and my heart goes out to you and your family during this time! All I can say is take it one day at a time... all the best to you.

Bednarova · January 2015

@efeehan‌, DH said to look into soft tissue sarcoma specialists at Duke, Emory or Hopkins to start with. Across the board, those three institutions will have a high standard of care and knowledgable physicians.

He said you could try Sloan Kettering in Manhattan if you wanted to go that far.

He also wanted to know where physically in the body the cancer was found?

efeehan · January 2015

It is in the left retro peritoneal. The tumor measures 8x6cm (about the size of an iphone 6 for those who need a reference). There is also what looks to be a very enlarged lymph node next to it. There are changes in the illiopsoas muscle and it looks like changes in the iliac crest as well. They did not do a biopsy of the lymph node, just the tumor. We have a referral to someone at Wake Forest for an appointment on Jan 20, but we are trying to get into Duke preferably for a consult. We also have connections at Dana Faber in Boston so Manhattan would not be out of the question!

I think the waiting is the worst. I will hopefully feel much better once we have some more information and a plan. Everyone has said, "let us know if you need anything" I just don't know what I need- besides the bottle of wine or vodka that I can't have!

staciecoffey · January 2015

I am so incredibly sorry! You and you're family are in my thoughts and prayers!!

LadySif · January 2015

So sorry you have to go through this. Nothing I can add to the others, either, but please do let people help - meals, chores, etc.

stinybean · January 2015

I'm sorry for your DH's diagnosis. My thoughts and prayers are with you and I hope you get answers from the oncologist. Many (((HUGS))))

sgarmand · January 2015

I'm so sorry you're going through so much, I can't imagine how you feel. I know you're in NC, but MD Anderson Cancer Center in Houston is one of the best in the country. My mom moved from Florida to be treated there for breast cancer, and I actually know a girl who is now in remission that spent the past year there being treated for an extremely rare sarcoma.

I hope your DH gets the best news possible regarding the severity, and the best treatment to go along with it. Take care of yourself, and never shy away from reaching out for help.

Keeping you and your DH in my thoughts and prayers.

limgrace77 · January 2015

I'm so sorry that you and your DH have to go through this. I have no personal experience or words of wisdom but can only offer my (((hugs))) and thoughts for you and your family.

Twinteriscoming · January 2015

I have no helpful advice, but I want you know we will pray for you and your sweet husband and your baby. I'm so sorry you're all dealing with this. Cancer sucks! I will keep you guys in my thoughts and pray for healing

cnoelle92 · January 2015

Oh my goodness, I am so sorry that you and your family are going through this! I have no advice, my thoughts and prayers are with you and your family!

Ducktapetherapy · January 2015

So sorry you are going through this! Prayers & hugs for you and your family! I know of a couple places that give free initial counseling over the phone and also give referrals in your area, if you're interested.

~Ducktapetherapy77

Katerina&Baby · January 2015

I am so sorry that you and DH are going through this - "Cancer" is just about the scariest word there is (in my book anyway). My T&P are with you guys. As at least one PP mentioned, don't be shy about asking for and accepting help from your support system - while you need to be there for DH, you're going through a lot too (physically and emotionally) and need support yourself. Please don't be a stranger here - we are ALWAYS here for you to vent/stress to (regardless of what those crazy special snowflakes may have been implying earlier). Please keep us posted on how you guys are doing.

jcprn · January 2015

So sorry for this hardship you're going through. Sending my thoughts and prayers to your family to get through this.

hazeldublin · January 2015

I'm so sorry your going through this. Thinking of your husband, yourself and of course your baby. Praying for a bright future for you.

Stormy61 · January 2015

I just wanted to say that my prayers are with you. We are all here for you when you need to vent about this situation.

blastocarrier30 · January 2015

I'm so so sorry to hear this. While I agree with your friends that you need to take care of yourself and the baby, don't ignore your instincts to worry and care for DH--he's your family, too. And I would not hesitate to talk to your OB about a counseling referral. Even the process of finding an oncologist may be enormously stressful. I'll definitely keep you in my T&Ps as you go through this, I hope you'll stick around and keep us posted! ::hugs!::

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