Hi everyone! Dx with stage 3b adenocarcinoma in Nov 2024.I had EBRT to reduce the size of the tumor so I could have a total hysterectomy, which I had. My oncologist thought the hysterectomy would be treatment enough given that the radiation had pretty much eliminated the tumor and the MRI before surgery found no evidence of malignancy.Unfortunately,I was upgraded to stage 4 after they found a tiny,.06 cm implant on my diaphragm and a positive pelvic wash.I then had 6 rounds of carbo/taxol with Keytruda added, even though I am pmmr.A PET/CT scan this past October revealed a small nodule in my mesentery that had gotten bigger since my last PET scan in June and a new lymph node in my neck, despite chemo. My oncologist scheduled me for surgery to see if the nodule in my mesentery could be removed or at the very least biopsied to see what molecular changes have occurred. The spot in my neck and Mesentery were negative for cancer,but,a few tiny implants were again found on my diaphragm and another positive pelvic wash.The pathology came back as malignant adenocarcinoma of Mullerian origin!!!! When I looked this up, the stats and prognosis looks grim.So ,I guess I would say that right now ,I have a very, very low disease burden,but,this type of cancer sounds relentless. I am just so terrified and overwhelmed. I have appointments next week to dicuss treatment,next steps etc.Does anyone have this?Had this? I would be so grateful for any feed back, information, experiences etc.Thank you all!
Hi Skittleshanks
Welcome to the Womb group.
I am sorry to hear of your diagnosis of stage 4 carcinoma sarcoma and to hear that it has become active again.
I would advise against googling as its not really helpful and can be scary. A prognosis given on google is only an average at one point in time and knows nothing about your personal medical details.
It is true that carcinoma sarcoma can behave more aggressively and it is a type 2, grade 3 cancer- however they tend to treat it as an endometrial cancer as it tends to act and respond to treatment in a similar way. Mullerian is a term that is not used so much now- carcinoma sarcoma put simply is a mix of cancer cells- some a carcinoma cells and there are some that are sarcoma cells. Although it has sarcoma in its name it is not uterine sarcoma- which is a different type altogether. When looking at treatments and prognosis other factors are helpful for the doctors such as MMR status, any genetic markers and whether or not the cancer was hormone positive.
I found out my cancer was a carcinoma sarcoma after my post op results came back. I had surgery first, then chemotherapy (carboplatin and paclitaxel) and then 25 sessions of external beam radiotherapy. I then went on to check ups for 2 years and was seen every 12 weeks.
I have been clear of cancer for 3 years and 3 months post treatment.
It is good that you have an appointment next week to discuss next steps. During my check ups I did ask what treatment I could be offered if I had a recurrence. My consultant said it would depend on the position and extent of any cancer. She said surgery could be an option if it was in 1 or 2 places. Chemo would be a possibility either the same chemo or a different regime. Radiotherapy would be out for me as they do not tend to do it in the same place more than once. She also spoke about different types of immunotherapy and targeted therapy. I know for some people who have a hormone positive cancer then hormone therapy can sometimes be an option to keep the cancer at bay. For some people there may also be clinical trials.
What I am trying to say is that although this is not great news and I can understand how worrying it is, my consultant did say that there would be different treatment options if it did recur.
Maybe think about making a list of questions ready for your appointment next week. I found it helpful for mine.
Do also give the Macmillan Support Line a call if it would help to talk things through. They are there from 8am-8pm daily.
I hope your appointment goes well next week, in the meantime we are here if you need us.
Jane
You are not alone Gwen and it is a scary time waiting to find out about treatment. I would imagine that they will want to get the biopsy done as soon as possible and there is no harm in contacting them for an update.
It is important to check the neck area to enable the most effective treatment. If there is cancer there then it would be best to have the chemo to mop things up before the surgery. However if there is no cancer there then the surgery would be the best first step.
I had surgery and then chemo and then radiotherapy and it wasn't easy at times, but once I knew what was going to happen and when, it did feel more manageable. The first session of each felt scary but once I had started, it did go quicker than I thought. It is about matching the most effective treatment to the cancer and it does seem to take ages when you are waiting.
Jane
Hi Gwen
Good luck with the treatments tomorrow. I have not had the immunotherapy part (although others on here have) but I did do the chemo.
I can understand you feeling low and I know it can feel a shock and overwhelming. I remember the night before my first chemo and I was really anxious and thinking all sorts. However once I got there and got through the first hour it felt ok. I was well looked after and had some lovely nurses. There was also a lovely lady who I believe was a Macmillan volunteer who came around regularly with cups of tea and biscuits. At lunchtime she came back with fresh sandwiches and yoghurt/rice puddings/jelly.
The first treatment is the worst as you don't really know what to expect. At my hospital there were reclining chairs in bays of 6 and it was a bright and airy place. It was all very calm and welcoming although I had every faith that if something went amiss they would deal with it efficiently.
I would suggest wearing comfy clothes and layers. I took a blanket from home on the nurses suggestion. Slip on shoes are good as they will weigh you when you get there. I took some squash with me to add to the water they provide. I also took my phone and charger and something to read.
I hope your experience is similar to mine and do let us know how it goes (when you feel up to it of course)
Jane
