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Follicular Lymphoma and husband wants to continue trying for child

Posted by caracello22 @caracello22, Feb 13, 2023

Hello all. I almost feel bad for posting this, as I feel I may be in the minority here as someone with a not very aggressive form of cancer. Be that as it may, what I mentioned in the title of this post is an issue and I thought I'd post here to see if anyone could help me wrap my head around it.
My husband and I have always wanted to have 2 kids and were trying for our second when we found out I have follicular lymphoma. The doctor said "This one's not going to get you" and that I should live my life as normal. I'm on a watch and wait approach and am 45 years old. It's not going to be treated in time for me to get pregnant and carry another child. It's just going to be there. I already wonder if I'll be around to see our son grow up. Part of me still wants to have a second child, but in addition to what I've already mentioned, these questions weigh on my mind:
1. Can people with this disease get pregnant? If so, is there a higher than usual risk of the baby having health issues (I am aware my age already presents an obstacle there)?
2. If I were able to get pregnant, what are the chances my prognosis would get worse?

My husband isn't someone who generally thinks beyond the present moment. He's extremely intelligent (and I do mean extremely- the man is an astrophysicist and understands many things well beyond my comprehension), but things of a more creative or emotional nature are more difficult for him to grasp.
BTW, contact with my hematologist is not good (not at Mayo clinic; we live in Sweden). On the occasions I have asked him something, he's been dismissive (1st set of watch and wait tests he didn't contact me at all to discuss results; I waited nearly 2 weeks and contacted him, and in response to hearing I've been having a little trouble holding my water since cancer diagnosis simply said nothing to do with cancer, ask the general practitioner). My general doctor requested a second in person appointment with the hematologist for me to clear up some of my concerns, of which there are several. Appt is in 3 months.
A very sincere thank you to anyone who has read this and has information that could help.

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caracello22 | @caracello22 | Mar 1, 2023
In reply to @pmm "That’s a lot to consider. Like Lori, I had to digest what you wrote before responding...." + (show)
@pmm

That’s a lot to consider. Like Lori, I had to digest what you wrote before responding. Having raised five girls and adopted a son, my first response was that if they were born teenagers, people might never have a second child. So there’s that. But you and the children survive those years and they grow into (mostly) delightful adults who enrich your life and often give you truly precious grandchildren who, unlike their parents as teenagers, love you, seek out your counsel and are happy to spend time with you. It all works out.
I suspect that your physician (hem/onc) is not serving you well. You need someone who is solidly in your corner and gives you information. That’s so important.
I also suspect that you need an ob/gyn who specializes in high risk pregnancies due to age as much as the potential risk of the lymphoma both to you and the fetus. Is there a genetic component? I hate to introduce that worry and hopefully not but I would want that ruled out.
There is a lot going on here. You need to live your life fully and scratch what itches, but one must weigh the cost as well as the reward. I’m sure either way you will decide what is best for you and your family.
Let us know! We will cheer for you whatever you decide.
Patty

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Wow, six children! That's a lot of mouths to feed! Are they close in age (wondering here how many teenagers you had in the house at once)? As I said before, I consider myself very lucky to have even one little (mostly) sweetheart. Hubby and I both had the genetic testing required for ivf 5 years ago and no, there is no genetic component. Our son was conceived naturally, but since I'm no spring chicken anymore, I think nature may make the decision for us.
Regarding the oncologist, I agree. Unless I see a huge change in attitude at my next appointment, I will likely switch treatment centers. We're moving soon and will be living closer to other hospitals anyway, so it makes sense. The obstetrician, on the other hand, is another story. Here, one schedules an appointment with a midwife once you're pregnant. They won't see you before you're 8 weeks unless it's a high risk pregnancy. Those who wish to get pregnant are referred to fertility clinics, and fertility clinics here don't treat women over 43 years of age. I know there are clinics in other countries we could go to, but in my case now that's beside the point. In any case, thanks for sharing your story and for the support, it is much appreciated!

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Mentor
Patty, Volunteer Mentor | @pmm | Mar 1, 2023
In reply to @caracello22 "Wow, six children! That's a lot of mouths to feed! Are they close in age (wondering..." + (show)
@caracello22

Wow, six children! That's a lot of mouths to feed! Are they close in age (wondering here how many teenagers you had in the house at once)? As I said before, I consider myself very lucky to have even one little (mostly) sweetheart. Hubby and I both had the genetic testing required for ivf 5 years ago and no, there is no genetic component. Our son was conceived naturally, but since I'm no spring chicken anymore, I think nature may make the decision for us.
Regarding the oncologist, I agree. Unless I see a huge change in attitude at my next appointment, I will likely switch treatment centers. We're moving soon and will be living closer to other hospitals anyway, so it makes sense. The obstetrician, on the other hand, is another story. Here, one schedules an appointment with a midwife once you're pregnant. They won't see you before you're 8 weeks unless it's a high risk pregnancy. Those who wish to get pregnant are referred to fertility clinics, and fertility clinics here don't treat women over 43 years of age. I know there are clinics in other countries we could go to, but in my case now that's beside the point. In any case, thanks for sharing your story and for the support, it is much appreciated!

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I constructed my family in three “batches” so 3, two years apart then 5 years to recover, than two more. My son was a “loaner” child who I fostered but when he became adoptable we were already in love with him. So six.
Our house was busy and fun. We often had to sort out which children lived there and send the others home.
Take good care of yourself and fight for what you need. You are essential.

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caracello22 | @caracello22 | Mar 1, 2023
In reply to @pmm "I constructed my family in three “batches” so 3, two years apart then 5 years to..." + (show)
@pmm

I constructed my family in three “batches” so 3, two years apart then 5 years to recover, than two more. My son was a “loaner” child who I fostered but when he became adoptable we were already in love with him. So six.
Our house was busy and fun. We often had to sort out which children lived there and send the others home.
Take good care of yourself and fight for what you need. You are essential.

Jump to this post

Busy and fun sounds awesome! Sounds like you had a lot of positive energy to balance out the teenage attitude (though perhaps not at exactly the same time). Thanks for the reminder that I matter. As a mother, I find that I'm often putting my son first and forgetting the fact that I need to look after my own health and interests as well.

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