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New baby and new diagnosis

Forums General Melanoma Community New baby and new diagnosis

  • Post
    Amanda
    Participant
      Hi Everyone, I’ve been reading through the forum and so appreciate all the support provided to one another. I am a mom to a little boy and a new baby girl and was just diagnosed with melanoma on March 11, 2022. I am waiting for my doctor to schedule surgery. I am struggling so much with this new reality and just wondering if there are any fellow moms out there who might share how they go forward and try to enjoy each moment with their children. I want to make each moment count but I’m having a hard time. I feel sick all the time with anxiety and just don’t see how life can ever be good again. So sorry to be negative but that’s the space I’m in currently. Thanks for any guidance.
    Viewing 7 reply threads
    • Replies
        tedtell1
        Participant
          Hi Amanda;
          So sorry you are here and are having such a hard time with your diagnosis. I think a little more information might be helpful to others (especially moms) who are responding to your post. You said that you have been diagnosed and are going to have surgery. Is this a wide local excision to establish margins? Or removing tumors seen on scans? If it is a wide local excision (you may see it referred to as the WLE here on the site), that is a standard procedure for anyone who has a mole that has been removed and has been identified as melanoma. It does not mean it has spread, or that you have advanced stage cancer, it is just to make sure they are cleaning your “margins” up. They want to make sure you don’t have any cancer cells lurking on the edge of where the mole was cut out of. So deep breaths and know that you (and your doctors) have this. Are you seeing a melanoma specialist? That is really a good thing too!
          Virtual hugs and blessings,
          Ted
            Amanda
            Participant
              Hi Ted,

              Thank you so much for your response. The dermatologist said I would likely have a WLE but not yet sure if it will include lymph nodes. She ordered a CASTLE genetic test to see what my risk class is so she’s going to wait to schedule the WLE and maybe lymph nodes removal until those come back. That’s making me very nervous to wait so I did reach out to MD Anderson which is not close by but I’ve read they have good specialists. I should have gotten a copy of my report but didn’t think to ask in my shock. I would be so grateful to hear about others WLE in the shoulder area. I don’t imagine I’ll be able to hold my baby which breaks my heart. Thank you again for responding as I’m feeling so alone right now.

              AshleyS
              Participant
                Hi Amanda,

                I found a suspicious mole during my first pregnancy. My OBGYN said not to worry and that moles often change during pregnancy. When my daughter was 9 months, I had the mole removed. It was Stage 1b cutaneous melanoma. I had a WLE and they did all the other tests/scans and they came back clear.

                I had had three miscarriages before my daughter, so we wanted to try quickly for a second. However, as is often the case, we got pregnant right away. When I was 20 weeks along, I felt a lump in my groin. A biopsy told us that it was melanoma. I consulted with doctors all over the country and had lots of different opinions what to do. In the end, I did not do any treatment and carried my son to 36 weeks. I was induced and had scans a week after my son was born.

                The scans were awful. I had cancer everywhere…spine, lungs, liver, etc. I have a very long story, but in the end, a medical trial save my life. That medical trial is now FDA approved and standard care.

                I have been cancer free for six years and off of treatment for four years. My daughter is 9 1/2 years old and my son is 7 1/2 years old.

                No matter what happens, do your best to stay in the present. (Easier said than done!) make sure you have a medical team you trust and find a new one or get a second opinion if you need to. hugs, girl.

                Please feel free to reach out if you need someone to talk to. I don’t come on theirs board a lot, but I do check in once in a while to see if there are any people struggling with melanoma and pregnancy.

                Keep on keepin’ on!

                Ashley S

                Amanda
                Participant
                  Hi Ashley,

                  Thank you so much for reaching out to me and sharing your story. I am so thankful to learn how well you’re doing and greatly appreciate your encouragement to stay in the moment. Your story reminds me of mine in that my baby is 9 months old and I’m just starting this new journey. I went to get a second opinion today and was scared to learn that this dermatologist didn’t agree with the first one in waiting for a genetic risk assessment. I wish I had gone to this dermatologist first and wasn’t waiting for the WLE. Hopefully this new referral will be quick and I’ll get scheduled. I’m also waiting to hear back from MD Anderson as I saw there is an oncologist there who specializes in how pregnancy may affect melanoma. I’m just an emotional mess overall but when I read your story I felt such support and want to thank you again for sharing this with me. I hope to talk with you more soon.

                  Amanda

                  luckymm
                  Participant
                    Hi, Ashley
                    My story is similar with you. I found a mole appeared in my belly when my first pregnancy, but didn’t think it’s a problem. Until now, several weeks ago, I went to check it by accidently, and biopsy told me it’s melanoma. The worst thing is I’m pregnant with 25 weeks. I can’t believe it, so shocked and I don’t know what to do. My first baby is only 5 years old. I cried a lot of times. It’s the darkest time in my life. You don’t do anything during your pregnancy, why? I am waiting for the specialist appointment and don’t know what the next step is. So scared.
                  tedtell1
                  Participant
                    Hi again;
                    My WLE was on the back of my shoulder. Was very sore and tight, but (I am old, my babies are grown up) I could have held a wee one within a day or two. It was a nine inch excision, but not problematic. Guess it depends on how deep they need to go. MD Anderson is sure a good place according to many. Make sure you stop and enjoy your kiddos and don’t anticipate stuff that hasn’t happened yet. I think you should see more responses soon. Probably the weekend thing. Just know that there are a lot of mommas here. Cancer is an awful word to hear when you have young kiddos, but most people who just have a single positive mole go on get their yearly checks and stay cancer free. You see a lot of people talk about how they progressed here, because the ones who didn’t don’t stay on the forum, they go own with their lives if they ever even come here, so don’t rely on the figures or numbers or stories of people here about progression etc!
                    More virtual hugs,
                    Ted
                      Amanda
                      Participant
                        Hi Ted,

                        Thank you so much for letting me know and for your kind encouragement. I went to get a second opinion this morning and this dermatologist said I should not be waiting for this CASTLE testing to come back and need to get it out now so hopefully that will happen soon. I’m trying to stay in the moment but it’s certainly the most challenging time of my life. Thank you again for your support!

                        Amanda

                        Amanda
                        Participant
                          Hi Ted,

                          I wanted to say hi and thank you again for giving me so much encouragement and hope when I first made my forum post what feels like a lifetime ago. I really held on to your kind words these past months and again just wanted to say a very big thank you. I had a WLE and just got the results this week and am stage 1a so very thankful. I greatly appreciate you and this whole forum. Hope you’re doing well!

                          Sincerely,
                          Amanda

                        LRS88
                        Participant
                          Hi Amanda,
                          First of all, let me say I am so sorry for what you are going through. I truly feel for you and I know the fear and anxiety you are dealing with. Almost exactly 3 years ago, when my second son was about 11 months old I was diagnosed with stage 1A melanoma on my stomach. I had to have a WLE and continue to follow-up with my dermatologist multiple times per year.
                          As others have stated, it is important to get a copy of your pathology report (and also to discuss it with your doctor). I pray that a WLE is all the treatment you need for now.
                          as others have said please reach out if there is anything I can help you with as you deal with this.

                          sending prayers and good vibes your way,
                          Lindsay

                            Amanda
                            Participant
                              Hi Lindsay,

                              Thank you so much for your response. It sounds like you’re doing well and I’d be so grateful to know how you handle the anxiety and stress while staying present for your children. I just feel sick with anxiety constantly and I know this is just the beginning as I haven’t even had surgery yet. Thank you so very much for your prayers!

                              Amanda

                            Danielle T
                            Participant
                              This reply has been marked as private.
                              Thisisnottheend
                              Participant
                                Hi Amanda,

                                I was diagnosed when I had a barely two year old and an 8 month old. It ended up being stage 3C. I can relate to the fear, especially when there are kids involved. The fear won’t go away, but I can promise it will get easier. The initial shock of cancer is the hardest.

                                I went on to have immunotherapy (which I had to fight for because it wasn’t standard of care for stage 3 patients in Canada at that time). That was almost 4 years ago. I’ve remained cancer free. In September of next year I’ll be at my 5 year mark. You’ll get there too!

                                Since then we’ve taken 2 adorable long term foster babies, moved into a beautiful home, etc. All that to say, have hope. Good things are coming. If you need it (and you may not!), immunotherapy is amazing stuff. Wishing you well.

                                Johanna

                                  Amanda
                                  Participant
                                    Hi Johanna,

                                    Thank you so much for sharing your story with me. It provides me with such hope. I’m so happy to learn about how far you’ve come from that initial time of what must have been such immense fear especially as a mommy to two little ones. I feel so overwhelmed at moments that I just don’t know how I can manage but going back to messages like yours gives me strength. Thank you again!

                                    Amanda

                                  Jess
                                  Participant
                                    Hi Amanda,

                                    I’m in a very similar situation as you. My melanoma was first diagnosed last year when I was 8 months pregnant. Had it removed from my back shoulder and was told a SLNB was not possible because of the pregnancy and that it would be pointless later on. Fast forward to January of this year and I went to a new derm due to a scheduling issue and found out that the original WLE didn’t actually have the appropriate margins. I should have had a 1cm minimum margin but only had a 0.5mm. Since I was having a re-excision anyways I asked about the biopsy and was referred to a medical oncologist. In late February I had the re-excision as well as 4 lymph nodes removed. Results showed metastases and now I am currently stage 3a.
                                    My baby is not even 1 year old yet and I’m going to be starting targeted therapy within the next couple of weeks. The meds are being delivered to my house tomorrow and I spoke with the pharmacist for almost 45 minutes today about all of the instructions and storage and side effects and quite honestly, I am terrified. I don’t know how I’m going to do this. I don’t know how much more I can handle. After battling postpartum depression after my daughter was born, I had multiple complications with my son that resulted in an emergency c-section and a med-flight to the NICU. Four months later, my son joined my daughter at daycare for the start of the school year but we pulled them both after one month – we found out through a nightmare scenario that my son had a broken arm due to abuse and neglect he was suffering at the daycare. I am now a stay at home mom, we are down to one income, and now trying to figure out how to navigate my treatment.
                                    I realized I deviated a bit here but I need to know that other moms have pushed through and survived. So thank you to those of you who have shared your stories and Amanda, if you want to cry together you let me know

                                    Jess

                                      Amanda
                                      Participant
                                        Hi Jess,

                                        Thank you so much for responding and for sharing your story. I’m sorry it’s taken me so long to respond. I had my WLE last week and am anxiously awaiting the results. I’m so sorry you’re going through this especially as a mommy to little ones. I hope your treatment is successful with minimal side effects. One thing I’ve been so encouraged by is hearing the stories of moms who have gone through treatment and are NED (I think that’s the term used). I know how terrifying it is to face this while looking at your precious babies. I’m so sorry to hear what happened to your son. No one should ever have to experience that. I’m so glad you’re able to have them home with you now but I know that comes with challenges as you need to take care of you too. I hope you have lots of support to help in this time. Please keep me updated on how you’re doing if you don’t mind. I’ll do the same. It’s so comforting knowing there’s someone who gets it and to be able to cry together at times. I’m sending you lots of good thoughts and will pray your treatment goes very well. I hope to hear from you soon!

                                        Sending hugs,
                                        Amanda

                                      JD_NY
                                      Participant
                                        Amanda, I hope that by now you have heard back the results on your WLE and have received good news.

                                        Our children are older, but when my husband received his diagnosis back in September, our world ground to a halt as we worried about if his time with the children was limited. Also, when my oldest was a newborn, I had a cancer scare. I was fortunate that it turned out to be OK, but I totally remember the terror wondering if I would be around for my child. So while everybody’s experience is unique, I can empathize with your feelings.

                                        You are wondering how you can ever move on and enjoy every moment with your children – First and foremost, I hope that you are determined to be stage I because the prognosis is so good at that level. We were lucky that is where my husband was and even though he needs to be checked periodically, we have adjusted to that idea. You mention MD Anderson – I don’t know how far it is from you, but I think it is very smart and worthwhile to consult with them. It’s worth it to get the best treatment out there. Good luck! Please share when you get your results.

                                          Amanda
                                          Participant
                                            Thank you so much for sharing this with me! I hope your husband is doing well. I am feeling so thankful as I got my results back from my WLE and am stage 1a. It has definitely been a scary couple months as I know you know first hand from your cancer scare and what your husband has experienced. I’m still trying so hard to stay in each moment with my little ones and not worry about the future. I do want to learn all I can about this disease and be vigilant as I go forward with suncare and 3 month checks. I’m going to attend a melanoma clinic that is close to where I live just to be as educated and informed as possible. Thank you so much for responding to my post. It helps so much to hear from people who understand.

                                            Sincerely,
                                            Amanda

                                            luckymm
                                            Participant
                                              Hi Amanda,

                                              Another question is about stage 1A, it’s only about the thickness? Thanks.

                                            luckymm
                                            Participant
                                              Hi Amanda,

                                              I can understand your feeling totally. I just knew the bad result two days ago and can’t sleep, eat, do anything. It’s easier to say to be brave, but it’s hard to do.I’m pregnant now with 25 weeks, it’s another hard time for me. I can’t imagine the life without my 5 years old boy and my husband. So scared about everything. Hope we are all fine and get a better treatment result!

                                                Amanda
                                                Participant
                                                  Hi, I’m so sorry you’re going through this! I know how unbelievably scary it is and especially while being pregnant. I’m so glad you reached out to this forum as when I did that last month it truly made the biggest difference in how I felt. I have learned so much in this short time and most importantly that melanoma is highly treatable even at later stages. If you haven’t already I highly recommend looking at AIM Melanoma’s website as they have a wonderful peer support network and can match you with another mother who has been through the same experience. That has also helped me tremendously. I also saw you asked about the stages and how it relates to the thickness of the melanoma. I’m still learning more about this but in my case my surgeon said I have stage 1a because it had clear margins and they don’t believe it went to the lymph nodes. I actually was thinking it would be good to do the sentinel node biopsy but the surgeon said there was a 1% chance of it having spread but a 15% chance of infection if I had that done. I’m not sure if that’s what the standard practice is though. I just want you to know I’m thinking of you and praying all goes well as you navigate the next steps. Someone on this forum told me to try to stay in the moment and enjoy your little one and your pregnancy as much as possible. I know the fear makes it super hard and it’s been quite a challenge but just reading that was what I needed. Please let us know how you’re doing.

                                                  Hugs to you,
                                                  Amanda

                                                  luckymm
                                                  Participant
                                                    Hi Amanda,
                                                    Thanks for your reply. Could you mind to share with me something in your report, just like thickness, mitotic rate, vascular invasion status…I’m waiting for my appointment in next week and so anxiety for it…
                                                    Amanda
                                                    Participant
                                                      Hi luckymm,

                                                      I completely understand. I was honestly an absolute mess waiting to talk to the surgeon. Once I met with him and had a plan for the WLE I felt better and hope it will be the same for you. My pathology report for the shave biopsy showed .6 Breslow thickness, Clark level 111, no ulceration and vascular invasion not identified. Please keep us updated as I know many of us will be thinking of you and sending prayers and good thoughts your way.

                                                      Amanda

                                                      luckymm
                                                      Participant
                                                        Hi Amanda,

                                                        So appreciate your encouragement and information. I hope I will get the best result of this worst thing. Hope everyone here will be very well in the future. Pray for our healthy in every moment.

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