Breast cancer in my early 30s
March 19, 2021 10:35 PM Subscribe
How to cope?
I found out on the 1st of this month that I have breast cancer. I’ll be 32 in May.
It’s early stage and very treatable, so my survival rate and overall prognosis are good. I’ll have a lumpectomy and radiation but should be able to avoid chemo and will likely be fine after that. But it’s still a huge shock.
I’ll be on tamoxifen for the next 10 years to lower my chances of recurrence. It puts you into early menopause. My husband and I do not have children and have been told we are now functionally never having any unless I have eggs frozen and then wait until I’m 42 to get pregnant. While that is of course possible, there are obviously higher risks associated with advanced maternal age and there’s also no knowing what else might happen in that time with my diagnosis.
I’ve been leaning towards not becoming a mother over the past few years anyway, for personal reasons, but was still on the fence. The loss of choice has hit me harder than expected. I come from a more conservative, family oriented area where I’ve struggled throughout my life with feeling different from the people around me due to different life choices. It now sort of feels like I’ve been fast-tracked to Outsidersville in that it is overwhelmingly the norm here to be married with kids.
I also find myself unexpectedly mourning the loss of potentially ever having the chance to be pregnant, of nurturing my own biological child. But then sometimes I think I am just being silly about that.
There are a lot of things about my life that I do like - my job and my cat and my hobbies.
Has anyone else been through this? Or maybe a friend or family member? What helped you or them cope? What has helped you or them in embracing the future despite the diagnosis?
Thanks, all.
I found out on the 1st of this month that I have breast cancer. I’ll be 32 in May.
It’s early stage and very treatable, so my survival rate and overall prognosis are good. I’ll have a lumpectomy and radiation but should be able to avoid chemo and will likely be fine after that. But it’s still a huge shock.
I’ll be on tamoxifen for the next 10 years to lower my chances of recurrence. It puts you into early menopause. My husband and I do not have children and have been told we are now functionally never having any unless I have eggs frozen and then wait until I’m 42 to get pregnant. While that is of course possible, there are obviously higher risks associated with advanced maternal age and there’s also no knowing what else might happen in that time with my diagnosis.
I’ve been leaning towards not becoming a mother over the past few years anyway, for personal reasons, but was still on the fence. The loss of choice has hit me harder than expected. I come from a more conservative, family oriented area where I’ve struggled throughout my life with feeling different from the people around me due to different life choices. It now sort of feels like I’ve been fast-tracked to Outsidersville in that it is overwhelmingly the norm here to be married with kids.
I also find myself unexpectedly mourning the loss of potentially ever having the chance to be pregnant, of nurturing my own biological child. But then sometimes I think I am just being silly about that.
There are a lot of things about my life that I do like - my job and my cat and my hobbies.
Has anyone else been through this? Or maybe a friend or family member? What helped you or them cope? What has helped you or them in embracing the future despite the diagnosis?
Thanks, all.
I was diagnosed six years ago at 38. Huge shock is an understatement! Beyond my dad's melanoma, there is no cancer of any kind in my family; I had never considered this as a possibility for even a second. I'm a quite positive, easy-going person, and the cancer diagnosis brought me to my knees for a good long while.
Young Survivors Coalition is a great resource, especially with regard to subjects like fertility which are specific to younger women. My area has regular meetings (or at least did prior to COVID) and there are YSC groups on Facebook. I also made a good group of friends on the breastcancer.org message boards, although that may be overwhelming for you right now, as there are a lot of very frightened people posting worst-case fears in some of the forums. I had to limit my exposure to that site (and googling in general) for the first couple of months. In the end, though, connecting with other women who have been through this was, and is, the single most important thing in helping me get through it. We are fortunate, in a way, that our cancer is common - many, many people have been exactly where you are, faced with the same fears and confusion and grief. You will probably find over the next months and years that it seems like everyone has breast cancer; in the six years since I found my cancer I've had five other friends who have been diagnosed. Someday you're going to be that person that others in your life come to for advice and wisdom in navigating this time.
I know three women off the top of my head who have, with their oncologists' support, paused the hormonal (tamoxifen) stage of treatment to have babies, and everyone is happy and healthy. I know another woman who delayed treatment for a couple of months after diagnosis so she could freeze some eggs. Particularly if your cancer is so early you won't even need chemo, you definitely might have options. Some doctors are better at addressing these issues than others, so if you feel like you aren't getting a lot of information or empathy from yours, I encourage you to seek out other opinions. You're going to have a relationship with your doctor for a long time, and it's important you feel 100% comfortable with it. Another good thing about breast cancer being common is that there are many, many people treating it, and the standard of care is relatively uncontroversial. Your treatment probably won't change much from doctor to doctor, but the personal experience you have can change a lot.
I took tamoxifen for five years, finishing last September just before I turned 44. The Breast Cancer Index test indicated my chance of late recurrence is low and I would not benefit from another five years. (I hadn't had a period since February 2015, but it's back now with a vengeance, and it sucks!) Anyway, when I was diagnosed there was no such thing as the Breast Cancer Index test. I tried to argue with my oncologist at the time about whether I would do 5 or 10 years of tamoxifen and he said, "we'll talk about it in five years." At the time I found this very annoying, but I see now that his point was that treatment evolves. New studies are done, new tests and drugs are invented - the number of targeted treatments available now compared to what we had in 2015 is frankly amazing. So the lesson is to try to take it one day at a time. I know it's hard. I felt like my entire life was ruined forever when I found out I had cancer, but six years later, I'm all right. I'm still here and healthy, I don't think about it all the time anymore, I'm my normal resilient self. You're going to come through this, but I'm really sorry you have to do it.
posted by something something at 7:59 AM on March 20, 2021 [15 favorites]
Young Survivors Coalition is a great resource, especially with regard to subjects like fertility which are specific to younger women. My area has regular meetings (or at least did prior to COVID) and there are YSC groups on Facebook. I also made a good group of friends on the breastcancer.org message boards, although that may be overwhelming for you right now, as there are a lot of very frightened people posting worst-case fears in some of the forums. I had to limit my exposure to that site (and googling in general) for the first couple of months. In the end, though, connecting with other women who have been through this was, and is, the single most important thing in helping me get through it. We are fortunate, in a way, that our cancer is common - many, many people have been exactly where you are, faced with the same fears and confusion and grief. You will probably find over the next months and years that it seems like everyone has breast cancer; in the six years since I found my cancer I've had five other friends who have been diagnosed. Someday you're going to be that person that others in your life come to for advice and wisdom in navigating this time.
I know three women off the top of my head who have, with their oncologists' support, paused the hormonal (tamoxifen) stage of treatment to have babies, and everyone is happy and healthy. I know another woman who delayed treatment for a couple of months after diagnosis so she could freeze some eggs. Particularly if your cancer is so early you won't even need chemo, you definitely might have options. Some doctors are better at addressing these issues than others, so if you feel like you aren't getting a lot of information or empathy from yours, I encourage you to seek out other opinions. You're going to have a relationship with your doctor for a long time, and it's important you feel 100% comfortable with it. Another good thing about breast cancer being common is that there are many, many people treating it, and the standard of care is relatively uncontroversial. Your treatment probably won't change much from doctor to doctor, but the personal experience you have can change a lot.
I took tamoxifen for five years, finishing last September just before I turned 44. The Breast Cancer Index test indicated my chance of late recurrence is low and I would not benefit from another five years. (I hadn't had a period since February 2015, but it's back now with a vengeance, and it sucks!) Anyway, when I was diagnosed there was no such thing as the Breast Cancer Index test. I tried to argue with my oncologist at the time about whether I would do 5 or 10 years of tamoxifen and he said, "we'll talk about it in five years." At the time I found this very annoying, but I see now that his point was that treatment evolves. New studies are done, new tests and drugs are invented - the number of targeted treatments available now compared to what we had in 2015 is frankly amazing. So the lesson is to try to take it one day at a time. I know it's hard. I felt like my entire life was ruined forever when I found out I had cancer, but six years later, I'm all right. I'm still here and healthy, I don't think about it all the time anymore, I'm my normal resilient self. You're going to come through this, but I'm really sorry you have to do it.
posted by something something at 7:59 AM on March 20, 2021 [15 favorites]
Also: My cancer was Stage IA. I had a lumpectomy and radiation and 12 weeks of chemo, followed by a year of Herceptin, a targeted drug for my specific kind of cancer. Even now when I talk to people, especially people with more advanced cancers than mine, I feel a weird guilt or tendency to downplay it, like mine was "only" stage one and I had the "not so bad" chemo. Fuck that! We don't need to be talking ourselves out of being terrified and angry. It's cancer, and it's real, and hearing that word about my own body shook me to my soul. I mention this because I see you trying to rationalize a little bit ("I will likely be fine", etc.) and I just want to say that while that is true and it's helpful to remind yourself of the statistics, you have every right to be as freaked out and emotional as you need to be. I think as women we often feel societal pressure to make everyone else feel okay about our problems - I found myself comforting many people in my life about my own cancer! My husband definitely didn't know what to with me at times - I was unrecognizable emotionally to myself, so I'm sure it was confusing for him to try to figure out what was going on - but as time passed I got better about not worrying about his perceptions of my feelings.
posted by something something at 8:18 AM on March 20, 2021 [9 favorites]
posted by something something at 8:18 AM on March 20, 2021 [9 favorites]
A lot of positive medical advances can happen in 10 years. Hang in there, and I wish you well!
I think it would be worthwhile to freeze your eggs just in case you do decide to have children at age 42.
Quote from an article in The New York Times:
Dr. James Grifo, M.D., Ph.D., program director at the NYU Langone Fertility Center ... pointed out that while “pregnancy is one of the riskiest states that most women experience in their lives,” the odds of a calamitous event are still low. “The average age of my patient is 39, and obstetrically, they do quite well,” he said. “Age is not a reason not to try if you want a baby.”
My father was 40 when I was born (mom was 33), and he was 45 (mom was 38) when my sister was born. They were great parents and never seemed "old" to me at all!! I also have a friend who was married for 14 years before they decided to have a child; it worked out great for them.
FWIW, I have been single for 38 years after a brief 2-year marriage, and I have relatives who ask me why I never married again. To hell with them! LOL
posted by SageTrail at 10:11 AM on March 20, 2021 [4 favorites]
I think it would be worthwhile to freeze your eggs just in case you do decide to have children at age 42.
Quote from an article in The New York Times:
Dr. James Grifo, M.D., Ph.D., program director at the NYU Langone Fertility Center ... pointed out that while “pregnancy is one of the riskiest states that most women experience in their lives,” the odds of a calamitous event are still low. “The average age of my patient is 39, and obstetrically, they do quite well,” he said. “Age is not a reason not to try if you want a baby.”
My father was 40 when I was born (mom was 33), and he was 45 (mom was 38) when my sister was born. They were great parents and never seemed "old" to me at all!! I also have a friend who was married for 14 years before they decided to have a child; it worked out great for them.
FWIW, I have been single for 38 years after a brief 2-year marriage, and I have relatives who ask me why I never married again. To hell with them! LOL
posted by SageTrail at 10:11 AM on March 20, 2021 [4 favorites]
Hugs to you! While I haven't had cancer, life circumstances lead me to my first and only pregnancy at age 42. If you want some first hand accounts of being pregnant at that age if you decide to go the egg freezing route, feel free to send me a PM. Good luck with your treatment.
posted by weathergal at 10:22 AM on March 20, 2021 [2 favorites]
posted by weathergal at 10:22 AM on March 20, 2021 [2 favorites]
When I was diagnosed with cancer, my doctor roommate told me to remember that all cancer statistics are by definition out of date. Agree that there can be many advances in ten years.
You might be interested in the graphic memoir Cancer Vixen. The author was 42 when she was diagnosed with breast cancer, so older than you, but I do remember being very moved by the sections where she finds out the diagnosis will keep her from having children (there's more than one because at first she thought she would have time to have one child). (It also may be too much for you right now .)
I really liked Kris Carr's documentary Crazy Sexy Cancer. Carr doesn't have breast cancer (she has epithelioid hemangioendothelioma, with tumors in her liver and her lungs), but she was diagnosed as a young adult and the documentary also follows several other women who were diagnosed with various cancers as young adults. Carr is very into lifestyle changes, especially nutrition, and what you think of her work may depend on your tolerance for spirituality and some amount of woo. She does see a conventional oncologist, but she also pursues other avenues of healing. She is also funny.
posted by FencingGal at 11:40 AM on March 20, 2021 [2 favorites]
You might be interested in the graphic memoir Cancer Vixen. The author was 42 when she was diagnosed with breast cancer, so older than you, but I do remember being very moved by the sections where she finds out the diagnosis will keep her from having children (there's more than one because at first she thought she would have time to have one child). (It also may be too much for you right now .)
I really liked Kris Carr's documentary Crazy Sexy Cancer. Carr doesn't have breast cancer (she has epithelioid hemangioendothelioma, with tumors in her liver and her lungs), but she was diagnosed as a young adult and the documentary also follows several other women who were diagnosed with various cancers as young adults. Carr is very into lifestyle changes, especially nutrition, and what you think of her work may depend on your tolerance for spirituality and some amount of woo. She does see a conventional oncologist, but she also pursues other avenues of healing. She is also funny.
posted by FencingGal at 11:40 AM on March 20, 2021 [2 favorites]
Hi, I had a baby after a breast cancer diagnosis. Check your MeMail.
posted by purpleclover at 12:43 PM on March 20, 2021 [2 favorites]
posted by purpleclover at 12:43 PM on March 20, 2021 [2 favorites]
My mother was 33 when she was diagnosed. She has been in remission for 34 years. I wish you the same success that she has had, and would encourage you to consult with a ferility doctor as part of your treatment.
posted by notjustthefish at 6:18 PM on March 20, 2021 [3 favorites]
posted by notjustthefish at 6:18 PM on March 20, 2021 [3 favorites]
I sent a message to the OP, but I'm also going to follow up on notjustthefish's message, so this question might be useful to future searchers.
This sounds like very unusual advice about fertility after breast cancer. A reproductive endocrinologist that specializes in oncology would be the best person to consult, because it sounds like the OP is not getting the full picture of fertility after cancer, which is possible (although may not be what the OP wants, which is the most important thing.)
Some older medical oncologists are not interested in fertility preservation, which is a shame. A second opinion, either from a medical oncologist or a reproductive endocrinologist (or even an OBGYN who is willing to work with a patient and expand what they're used to) would be a good next step for a person in a similar situation.
I wish everyone reading this gentle luck and care. It is a life-altering situation.
posted by purpleclover at 8:01 PM on March 20, 2021 [2 favorites]
This sounds like very unusual advice about fertility after breast cancer. A reproductive endocrinologist that specializes in oncology would be the best person to consult, because it sounds like the OP is not getting the full picture of fertility after cancer, which is possible (although may not be what the OP wants, which is the most important thing.)
Some older medical oncologists are not interested in fertility preservation, which is a shame. A second opinion, either from a medical oncologist or a reproductive endocrinologist (or even an OBGYN who is willing to work with a patient and expand what they're used to) would be a good next step for a person in a similar situation.
I wish everyone reading this gentle luck and care. It is a life-altering situation.
posted by purpleclover at 8:01 PM on March 20, 2021 [2 favorites]
I am an oncologist but obviously not yours. There are some good suggestions here, but the best is to get an opinion from an oncofertility specialist to talk through your options, and if your oncologist is not interested in supporting any desires fertility preservation, finding one who is.
You likely also qualify for genetic testing if it hasn’t been offered already.
The other great piece of advice here comes from something something - avoid at all costs comparing your situation to anyone else’s. Oncology offices have tough waiting rooms and you are going to see people who look better and worse off than you. You have no idea what is going on with their cancer or anything else in their lives and the same for them in regards to you.
Take care of your brain. Find the kind of support you need - it’s different for everyone.
posted by honeybee413 at 2:18 AM on March 21, 2021 [3 favorites]
You likely also qualify for genetic testing if it hasn’t been offered already.
The other great piece of advice here comes from something something - avoid at all costs comparing your situation to anyone else’s. Oncology offices have tough waiting rooms and you are going to see people who look better and worse off than you. You have no idea what is going on with their cancer or anything else in their lives and the same for them in regards to you.
Take care of your brain. Find the kind of support you need - it’s different for everyone.
posted by honeybee413 at 2:18 AM on March 21, 2021 [3 favorites]
Hey, first of all, a big hug for you here if you want it.
A close friend got her diagnosis of BC three years ago. Here are two things I wanted to tell you:
Firstly, they said to her about the tamoxifen, that the first five years are important, but the second five are optional. She feels currently that at the 5-year mark, she wants to stop taking it, knowing there is a small risk, in order to try and have her much-wanted second kid. She might change her mind, but she's talked that through with her consultant and they've agreed it's a calculated risk that isn't crazy. For context we are in the UK.
Secondly, as you're avoiding chemo, you might not need so much practical help. But this is a time when the people who love you can take the opportunity to really show it. If you want to accept offers of help then do - people will gladly give it. Lifts to/from appointments, meals for recovery days etc.
Good luck and listen to your needs. Whenever you feel you need to cry and scream, do it, or if you need to laugh, do it, if you need to be with people, do, if you need to be alone, do.
posted by greenish at 3:29 AM on March 22, 2021 [1 favorite]
A close friend got her diagnosis of BC three years ago. Here are two things I wanted to tell you:
Firstly, they said to her about the tamoxifen, that the first five years are important, but the second five are optional. She feels currently that at the 5-year mark, she wants to stop taking it, knowing there is a small risk, in order to try and have her much-wanted second kid. She might change her mind, but she's talked that through with her consultant and they've agreed it's a calculated risk that isn't crazy. For context we are in the UK.
Secondly, as you're avoiding chemo, you might not need so much practical help. But this is a time when the people who love you can take the opportunity to really show it. If you want to accept offers of help then do - people will gladly give it. Lifts to/from appointments, meals for recovery days etc.
Good luck and listen to your needs. Whenever you feel you need to cry and scream, do it, or if you need to laugh, do it, if you need to be with people, do, if you need to be alone, do.
posted by greenish at 3:29 AM on March 22, 2021 [1 favorite]
Response by poster: Thank you to everyone for your comments, commiseration, and help. It’s appreciated more than you know - purpleclover and something something were especially kind and helpful. I don’t know anyone personally who has been diagnosed any earlier than mid-50s, so the stories of pausing tamoxifen to carry a pregnancy were also very helpful.
For future reference, my husband and I (in Canada) did consult with a fertility specialist. We discussed egg freezing/IVF. She quoted us CAD $12,000-16,000 (2020 prices) per round of egg retrieval. She mentioned that a small portion is covered by Medicare but that otherwise, it’s out of pocket - and that many people do go into debt for the process. For various personal reasons, the cost of this is not an option for my family.
She did mention the name of a charity in Ontario (we do not live there) you can apply to for funding. Subsequent research has shown me that Ontario covers one round of IVF per lifetime of each female patient under the age of 43. Manitoba and Quebec have tax credits for the IVF process and New Brunswick has a grant that covers partial costs. We also do not live in any of these places.
Anyway, I thought this information may be useful to someone down the road. Thanks again to everyone for your help.
posted by oywiththepoodles at 7:40 AM on March 28, 2021
For future reference, my husband and I (in Canada) did consult with a fertility specialist. We discussed egg freezing/IVF. She quoted us CAD $12,000-16,000 (2020 prices) per round of egg retrieval. She mentioned that a small portion is covered by Medicare but that otherwise, it’s out of pocket - and that many people do go into debt for the process. For various personal reasons, the cost of this is not an option for my family.
She did mention the name of a charity in Ontario (we do not live there) you can apply to for funding. Subsequent research has shown me that Ontario covers one round of IVF per lifetime of each female patient under the age of 43. Manitoba and Quebec have tax credits for the IVF process and New Brunswick has a grant that covers partial costs. We also do not live in any of these places.
Anyway, I thought this information may be useful to someone down the road. Thanks again to everyone for your help.
posted by oywiththepoodles at 7:40 AM on March 28, 2021
This thread is closed to new comments.
posted by penguin pie at 2:49 AM on March 20, 2021 [4 favorites]