Calling all TNs
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Hey DiV!
Nice to see you. Hope you're doing well.
Trish
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Shopgal, I'm so sorry for your terrible news! Please stay strong and fight this like a champ. My husband's cousin had cervical cancer and she had a hysterectomy first. The cancer came back, doctor told her she had a very aggressive cancer. Basically told her she had 6 months to live if she didn't get a total pelvic exenteration. She did the surgery and thank goodness, her cancer hasn't come back. It's been a few years now, I want to say maybe 3 or 4 years. So there is hope for you!
I met with my oncologist today and he wants to start chemo ASAP. I go for a port placement and echo sometime this week. I potentially start chemo next Monday. My oncologist wants to do AC followed by Carboplatin and Taxol.
I have the fertility doctor appointment this Tuesday morning and if they can't do whatever they need to do within a week, sadly I'll have to forego freezing my eggs and just getting chemo right away. My oncologist was very adamant about starting as soon as possible, but he said to go see the fertility doctor anyway, because he doesn't want to nor should he make that decision for me.
Rebekah, I see you start chemo soon, best of luck!
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I am overwhelmed all by your kind words of comfort. I cried reading them. I feel as though someone punched a hole in me. My ptsd from treatment last year is back and I've been living on Xanax since Friday.
Today I had my Ct scan of my chest and abdomen to check if the cancer has spread from my uterus to my organs. Thankfully they had a clean abdomen Ct that I had in march to compare it to and I also had a chest Ct from October as a baseline. Thankfully no mets, just the rare and very aggressive mmmt tumor cells in my uterus and the mass on my left ovary.
Now I am trying to get an appt at penn medicine in philly for a second opinion before a followup with my jefferson surgeon on tues to outline his treatment plan. The doc at Jefferson wants to do the surgery on 8/31. I just want to make sure he's the right fit for me as a doc. I wasn't happy that he got the results of my ultrasound back the day I got it on 7/31 and never told me the results until the day of my biopsy/d& c surgery last mon 8/7 . And on fri when I called him he said he wasn't going to call me until this Monday after the weekend to tell me the results of the biopsy. He said because I called him he had to tell me. He was getting ready to go on vacation this week but would be in the area to give me the results of my Ct scans today. But today he dictated the results to his medical assistant who called to tell me what he said. So that ladies is why I'm seeking a second opinion on a treatment plan. After dealing with tn I need to find the best doc and team that will advocate for me. Sometimes these docs get too caught up with focusing on the medicine and forget we are people. I swear I must have nagged my mo last year at my 3mo pfc and 7 mo pfc appt so much about was blood work needed for tumor markers or with asking if I was a candidate for xeloda or even what new meds or immunotherapy was new for tn. I even asked if I needed scans to monitor for possible reoccurrence. Each time I was told no. I finally had my ro do tumor markers in dec because she couldn't believe my mo hadn't done bloods since I finished chemo the year before. Plus no one ever told me to get my ovaries, tubes, or uterus out. In fact when I saw my mo right before he referred me to the gynelogic oncologist he thought my ovaries were waking up after chemo. Hah they did but awakened to produce cancer cells.
For thos just out of treatment push back hard on your team and insist on what you need. This time I will be louder and won't stop until I get the right docs.
Sucks to have a second cancer right now. I was just starting to enjoy being fearless again. My worst fear that we all have has come to fruition. It is back in a big scary way. I hope I'm strong enough again to make it thru.
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Shopgal *hugs*
stay strong, it has to be tough getting this news. just hang in there, you WILL get through this! sending positive vibes!
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Shopgal,
I am so sorry! If it helps at all,I found this thread about MMMT/treatment teams and recommendations on the ACS Cancer survivors network.
https://csn.cancer.org/node/304695
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Shopgal - I'm so sorry that you have to deal with such anxiety and fear again. I know life isn't fair, but come on! It's good to know that you are in an area with great choices as far as medical care is concerned - living in the Philly area gives me a bit more confidence I believe and I hope it does for you also
You are in my thoughts and my heart.
V
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MakeupLover- happy to see you're moving quickly along. Best of luck!
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placid 44 thanks so much for the links.
vL22 I am sorry if I gave you or anyone else the impression that I was meant life was not fair. I didn't mean to offend you or anyone else on this forum. Please do not take my words as anything more than my personal experience. Everyone's experiences are different and my post was me venting and not meant to bring anyone down.
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Shopgal, I'm sure you haven't offended anyone. We all come here to share and vent and reassure each other.
I had my first annual MRI post treatment today. I'm hoping this is just a question that they ask everyone, but as I was leaving, the guy asked me if I was still menstruating and when I said I had a partial hysterectomy, he asked if I was on hormones. I told him no, I was TN. I'm really hoping this didn't mean that he saw something that will need to be biopsied. MRI biopsies suck...not that ultrasound biopsies don't, they both do. I see my MO on Thursday after bloodwork and an mammogram.
Shopgal, I have bloodwork every three months, but I can't remember if they ran cancer antigen tests or not. Mostly it's to check my CBC, etc. if you don't like that guy, absolutely get a second opinion. Even if it means slightly postponing your surgery. You need to have the utmost confidence in your team.
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Oh Shopgal! Please don't misunderstand! You have offended no one! I just get angry when it seems wonderful people get an unfair burden is all. It just gets me so upset when women on here have to deal with such news
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I am sorry to have been gone so long, I have missed you all, and just read through the thread to get caught up.
Val, so very sorry about your dear friend. I know you are hurting and I am so sorry for your loss. She soundes like a wonderful lady and I know she will be so missed. Hugs to you.
Shopgal, gee whiz, just so sorry and sad and mad! You know statistics can be scary, but I want to share with you that my diagnosis of Triple Neg Inflammatory Breast Cancer has a bad survivor rate..(right Val!) and today is my 4 year Cancerversary, 4 years since diagnosis. I share this with you to give you hope, that you can beat the odds, and to try to be strong, be calm. I am just so sorry you are going through this.
Warrior, I too lean on my dog for support, and I am sorry your is struggling with health issues. We need these furry family members.
I have not heard from Annie, I am facebook friends with Allydp, she said sometimes Annie will click "like" on her posts, as she is fb friends with her. I nope this means she is out there being Annie, and getting joy from facebook.
Welcome to all the newbies, we are so very glad you found this wonderful place, a soft spot to land.
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Val, - My reading has been sporadic, and I see that I didnt respond to your sad post about your friend. I am so sorry for your loss. Try to find comfort in good memories. She was fortunate to have been so loved.
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Meadow, - good to 'see' you. Hope the summer has been comfortable and happy for you!
I have been thinking about Allydp and wondering how all is going with her!
Hope we hear from Cocker soon, too!
Hugs to all here
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Good to see you too Another! I am feeling really good, thank God. The Lat Flap surgery was a success. I have shared many times how much your encouragement meant and means to me, thank you. Ally is doing great! Not long ago she said she will pop in, she is feeling good, happy, thankful
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Great news about your surgery, Meadow!
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meadow I was thinking about you and wondering how you were. So good to hear from you.
I do want to update that I have 2 appts for treatment consults on Tuesday. The first is in the morning with the gyn oncologist who did my surgical biopsy/d&c at Jefferson in philly The second is in the afternoon with a gyn oncologist at penn in philly who was highly recommended.
It was just 2 years ago this time that I had my reexcision 8/3, port surgery 8/31, and started chemo 9/2. Déjà vu
Plus I had to explain to my travel agent about canceling my big trip to Europe in oct. She forgot to add in the trip insurance that I requested 2 months ago. Thankfully I had an email that I sent her. She put thru the insurance request today. She thinks I can get back some of the prepaid costs, but the air fare will be tough. She said I have a year to use it and had to say I most likely won't get to. So she is going to have to submit a medical hardship form for me to the airline and see what happens.
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Meadow, thank you, you are very sweet. I am so glad that you are feeling good! Looking forward to update from Ally, too!
Shopgal, It's so helpful that you are in an area with many choices re drs, and that you have recommendations. Those days of one appt after another are extremely difficult, but as we all know, once you have a plan in place it does settle down a bit and you will feel better. As for your trip, - if you have those e mails requesting the insurance, then your agent is liable for what ever it would cover! She is the professional that you worked with, - she is responsible! I know that is not what you want to be dealing with right now, - but dont let her off the hook and take a financial loss because of her oversight!
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Just hearing that Annie is occasionally clicking like on fb is good to know. Glad to hear it.
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Shopgal, what a relief that no mets showed up, but this second cancer stuff still sucks big time.
Lyn
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Shogal, Sending you love and hope. You don't need me to tell you that it's so unfair, but it is! I'm sorry that's you're going through this.
Meadow, lovely to see you and hear that the surgery and recovery has gone well this time. 4 years hey? That 4 year mark must have felt like it was so far away in the beginning, yet here you are. Awesome stuff.
I'm sending oodles of love and support to everyone on these boards, both in active treatment and post treatment. So long as we have these boards, there will always be someone that has at least a little understanding of what we're eachgoing through.
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HI Meadow....I've missed you. ❤️ So good to hear from you
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Hello to all
Shopgal, so sorry about your news. As Meadow stated, statistics suck. We both have TN IBC, horrid results, yet Meadow is 4 years and i"m just shy of 2 years. I so agree with you to press on to have the best team for treatment.
thanks so much to all about my friend. Such a loss. To refresh she was 8 years NED from stage 3TN, I didn't know exactly how many years had passed or that she was stage 3. Then an anerysem killed her instantly. Concentrating on the good times we shared and her loving support for me and my dx. She used to joke with me in chemo, that since I had dodged chemo 26 years ago for bc, that my body was just catching up. She had that sense of humor.
Meadow so glad you are good, have missed you dearly. Same with you AnotherNYCGIRL. You have been such a great source of encouragement. All of you.
Hey Cathytoo, can you believe we are approaching 2 years?
Newbies there is no better place for support. Welcome.
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Valstim52...Hey back to you‼️ No, I cannot believe we are almost at 2 years. Hope we are saying someday "Hey, can you believe it's been 5 years‼️"
I wish you and all our other "sisters" comfort, support, love and good health.
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I'm using Omniprazole for heartburn. I helps a lot. One day I had heartburn so badly even on top of that so I used Tums to take the edge off. You can ask your onc to prescribe something for heartburn as well. The Rx is way cheaper than purchasing OTC. I just got my Rx called in yesterday.
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Val and Cathy, I have missed you too! How was the Eclipse experience for everyone? I was able to watch it with my 85 year old parents and one of my sons, as he was off work that day. It was fun to share the experience with these loved ones. How about some of the rest of you?
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Photography is my hobby, so I went downtown to shoot the eclipse, even though my area only got 88% coverage. Lots of people wanted to look at my screen and took pictures of it. This phase collage made my local newspaper!
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LoveMyVizsla,
Beautiful! You are talented!
R
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LMV, oh wow! That is amazing! Very good job, you must have been thrilled.
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Above is a pic of my 85 year old parents watching the eclipse. My dad still farms, and my mom has more energy than I do. They really enjoyed the eclipse, and I enjoyed it, and watching them.
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