Supplemental Table 4

Qualitative Findings – Remarkable Responses

Key Themes / Responses
Uncertain Cancer Prognosis / My doctor did not inform me that I had any options…even though I informed him I had wanted another child. I feel very angry that I wasn't informed of any alternatives. Cancer doesn't run in my family. I was new to breast cancer. I wasn't ready for the diagnosis nor have I completely accepted it now. Sometimes I feel less than a woman. I don't know for sure if I would have wanted another child, but taking away the option and choice should raise concern for other women because going into forced menopause, is difficult and forever!
I was told not to have children by my doctor. Since my brother and I both had what were considered childhood cancers. Family members wanted to discuss saving my eggs. Dr. said it was very expensive and recommended that me and my brother not have children. I have had many hormone and weight issues since treatments that I was made to feel were my fault. My oncologist did not explain chemo could cause any of it.
Risk of Recurrence or Vertical Transmission / My doctor never even mentioned it, so I didn't know it was an issue. When we decided we wanted to have a baby we talked to our local follow-up oncologist, and I was told not to get pregnant. My oncologist and gynecologist agreed with that decision, so I had a voluntary hysterectomy. I didn't want to risk getting pregnant because they didn't know the risk of recurrence. I've been cancer free for 16 years now, but I've also been childfree for the same amount of time. It still makes me sad that I couldn't have a baby with my husband. I'm very saddened that I wasn't given every option. I feel very cheated.
I was told I would not be able to have any more children. My breast cancer was estrogen driven and very aggressive. If I were to get pregnant after treatment, I was told that most definitely, my breast cancer would return even more aggressively.
Nothing! I brought it up on my own, did my own research and no doctor, surgeon, nurse, or treatment specialist ever even mentioned it, despite the fact that I was in my thirties. I actually felt odd asking, as if it was a ridiculous question. I was told I would likely be able to conceive due to type of chemo [not as associated with causing infertility] but that women with breast cancer could not. Very depressing to hear.
My children may be more likely to come down with cancer.
Parity / I recall my doctor telling me that since I already have children, I shouldn't worry about my ability to have more.
At the time of my first chemo, just after the nurse started the first infusion of chemotherapy, the RN asked me which options I had considered regarding my fertility. To that point, no one had mentioned the fact I may not be able to have other children after cancer treatment. I cried and cried because although I was 3 months post-partum with twins at the time of my first chemo, I had never considered I wouldn't have the option to have more, if I decided to. Basically I felt that the choice had been taken from me. After the first round of chemo, I asked the oncologist fellow why I had not been given this option and she told me I should be happy that I had a healthy set of twins and not worry about more children. Her tone made me feel like I was stupid and selfish to even consider more children when I was trying to survive the cancer. I was so upset because even though I may have or may have not chosen to freeze my eggs, I would have at least liked to have been given some control over that option. The pain, and emotional strains of cancer are significant without additional considerations. I think that providing a woman with her options would give back some of the control in this situation and provide her with a bit of much needed respect and dignity in a process that often takes those things from her.
After my diagnosis, before choosing a course of treatment, I was asked a battery of questions. These questions pertained to every aspect of my life. When asked if I had children, my response was yes, 2. From that point on, I don't feel like I was given every possible option regarding my having more children. The doctors basically said that my chances of having more children weren't good, given the treatment I needed to have. But, at least I already had children, so I could be content with that. I didn't disagree. I just wanted to begin treatment for my cancer. That was my highest priority. No one explained to me that there might be other options that I could look at. It was presented to me as if this was just one more consequence of my having cancer, and something I had no choice about. I wish I could have made the choice, instead of it being made fore me. There were few things that I could make a decision on. I didn't have a choice. Looking back, there are many things I would have done differently. You think much more clearly when your mind isn't consumed with fear.
Age at Diagnosis / I was diagnosed with stage 4 Hodgkin's lymphoma at age 20. I had a wonderful doctor, although he did not discuss reproductive health with me at all, which being the age I was most definitely should have been discussed. After I brought it to his attention he explained the chemo I would be receiving had a low chance of making me infertile. I feel that someone being in the prime age to have kids that is diagnosed with cancer, it should be a top priority for oncologists to discuss future needs. I feel that perhaps my doctor was more worried about saving my life first since I didn't have a very good prognosis.
She said my chances of having children after my bone marrow transplant would be zero to none. She did not encourage me to look into fertility options. I was 19 and that would have been helpful.
He asked me if I wanted to have children and I said “yes”. He then asked me why? He thought I was too old to be having children at that point.
I was told that at my age (37-38) it wasn't wise to consider more children. We had two healthy children and although I wanted another child, my husband became adamant that it wasn't a wise choice. He may never have wanted another child anyway, but I felt the decision was made for me by that representation by the doctor. I had breast cancer and at the time, I was the youngest patient my oncologist had had with breast cancer. He gave me worst case scenarios presented as fact.
Unsure Desire / He told me that it might affect my ability to have children, but didn’t really give me any details. I think this was partly due to my age (19). I don’t think my doctor really considered dealing with it too much since having children was not something I was thinking about in the near future. And because of my age, it wasn’t something that I thought about either.
When I was diagnosed at 18, I needed to undergo immediate treatment. My med-onc told me that the chemo used prior to my stem cell transplant would cause menopause & render me infertile. He said there was always a chance that I would have my period return but the chances were slim. I was put on hormones soon after my transplant hoping the side effects on menopause would be minimal. Honestly, at 18 the only concern I had was living. I really didn't think much about the effects on my fertility until I met the man I married. It then became a huge and very emotional part of my life.

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