Hi Lauren, hope you get this message, I am not the best at technology of any kind:-) wanted to check in with you to see how things are for you? and whether you may have finished chemo/radiotherpy, has it been dual treatment.
Indeed very very rare, as is what I have gone through in Small Cell vaginal Cancer, there is little information, no leaflets etc, as due to rarity of these small cell types not enough monies to put into information, sadly through my journey I have never met anyone or heard of anyone with the same or indeed yours, how many session of radiotherapy and have you also had Brachy too.
I had near on 7 months of intensive treatment, mostly in hospital as the oncology hospital had never treated anyone as myself and type, so treated it like cervical but with “extra” sessions to give me a chance, small cell is very serious, it hides and tucks itself, sometimes the best scan to detect it is PET Scan, (expensive more so the CR and MRI) but I was told it is like the “rolls Royce of cars” so to speak. You are right by saying it needs to be treated very aggressively, after all it is upsettingly the worst type! we have to be Lioness’s for sure don’t we, sometimes in life we don’t get choices, and the impact physically and mentally can feel over whelming, and difficult when we cant chat with others with Small Cell.,myself I had dual treatment, both chemo and radiotherapy at the same time, I did have surgery first, was a massive shock and impacting, I had massive amounts of radiotherapy,which has absolutely taken its toll on my body and can take years to fully appear and side effects.guess we are all different in how our bodies react, I wish you the very very best, and hope you have an excellent oncology team as this matters.with kindness. Jane please post me how you are doing, thank you.
Hi Jane, I’m doing well thank you! Ive finished my 4 chemo rounds which was from 21st june 3 days then cycle started again 3 weeks later so had my last lot of them cycles on 25th AUgust. I’m about to start the external radiotherapy on Monday, everyday for 5 weeks then 2 rounds on bracytherapy start after and then potentionally 2 more rounds of chemo after that due to a error with the hospital giving me incorrect chemo first time, luckily did the job as they are sister drugs but they have me carboplatin and I should of had
Cisplatin aswel etopiside which was what I was advised about and signed for! Ongoing investigation is happening and I’ve also got a new consultant now, not just because of that but my original one was horrendous, they fact I named her dragon lady says it all!!
It worked out well as I was absolutely fine throughout chemo and carried on as usual pretty much and my scans came back last week that the tumours already shrunk by half the size which is brilliant! Ready for the next stage to start now.
Can I ask your story are you out of treatment now? What stage etc? I have managed to fine 4 other women who have had it all ranging from 11 years clear to 10 months clear! I’m petrified of this because of my daughter! I am ok but I’m pushing the bad thoughts to the back of my brain because I can’t think I will be one of them because of her, she needs me!! X
Hiya Lauren, just wanted to check in with you, and hoping you are managing with your days and not suffering with any side affects… sending kind wishes to you and strength, and do hope your daughter makes you smile, as we def need to as much as possible… wonder if you have pets? I found some contentment with animals… Cheerio… Jane x
Hi, yeah I’m fine coping very well no side effects but only starts the rads this week but upto now all good. My mum has her dog Eric but no pets bar him. We use to have our dog Molly but we lost her 2 and half years ago. Oh my little one keep normality for us, even if I was feeling it I’d have to crack on for that one which is a good thing x
Hiya, nice to get your reply through the forum I def understand how the pushing to the back of your mind is something you feel you need to do and focus ahead, we can be like rabbits in headlights! your goal is to get through treatment and we have to be guided by oncology professionals who have good skills too with chatting and explaining etc… we may find very different consultants, etc, some with amazing personal skills, but sadly some who are not…I hope you have a wonderful one to one oncology nurse too? Like yourself I have one child, a daughter, although I am probably much much older as is she Yes I am out of treatment, I am still under oncology and extended department within the hospital due to adverse side affects. staff are amazed by me, given as you know “Small Cell”!! I never knew or had even heard of it, had you? think we are quite Unique!!! I wish positivity and being petrified I really hope with give you the grit to do this for your daughter and importantly yourself, don’t do a day or a week at a time, try just an hour at a time as more manageable, and pat yourself on the back:-) I had a reoccurrence and other type of cancer since diagnosis of small cell vaginal C, but to say my journey started in 2011!!! with a very poor prognosis at the time and a consultant who gave me only until the Xmas!! who I won’t bore you with, but was transferred to another hospital, kind wishes and more on your journey, literally all these years and to hear your story is a first.thanks. Jane
Nice to hear back from you guess at least!! radiotherapy external ones don’t hurt!! which we don’t need… and sure you have the creams given to you? I have had you in my thoughts, and your daughter will be a source of good grit for you… Hope you have found the forum of some help and advice etc… sending you kind wishes, awww my dad was called Eric Jane x
Hello Lauren, not been on site as not been well but just to say hi & check in with you:-) not sure whether you received my last message,I’m never the best technically! Lol…. Do you take any anti nausea medication at all? Here’s to coping whatever way possible…. Kind wishes Jane
Hi, everyone. I know it’s a bit too late for me to restart this forum again. I would just like to share my story as a Small cell cervical cancer stage 3 patient. I was diagnosed in January 2019 when I was 36 years old. It started out when I went to my gynecologist for foul vaginal discharge… She examined me and found a large cauliflower-like mass in my cervix. She mentioned that I have to do an urgent MRI pelvis and undergo surgery the soonest possible to "save me… " And then everything went fast forward from that day on. I’m an oncology nurse as well and so I had trouble accepting my situation at first. At that time, it was like the end of the world for me. I have read about my disease and I came across with the words “poor prognosis” and “highly aggressive.” – having read that even worsened my emotional and mental state. My oncologist said my cancer is very rare. It was the first time my team in the Oncology Department handled such a case. I went through total hysterectomy, chemotherapy (Etoposide and Cisplatin), and radiotherapy after. I was clear then I had a recurrence after 10 months. My doctor decided to give me chemotherapy with immunotherapy (Carboplatin, Irinotecan, Tecentriq) for 3 cycles and radiotherapy again. If you ask me how I felt during chemo, I felt like being poisoned. I had to force myself to eat and look normal, especially in between treatment periods when I’m working. My follow up PET CT scan came back clear after my second round… But my doctor decided to keep me on Tecentriq infusions as maintenance every 4 weeks. I’ve been fighting my cancer now for 3 years hoping that there will be no more recurrence. I still want to see my little boys grow up, become good men, and have families of their own. My family and my oncology team have been very supportive.
through my journey I have never met anyone or heard of anyone with the same or indeed yours, how many session of radiotherapy and have you also had Brachy too.
please post me how you are doing, thank you.
