Stage changed to 4 from 3 following results of PET scan - treatment plan changed. Trying to see the positives, but …

Hi Rackelski

I am sorry to hear that you have been told that your stage has changed and I can understand how devastating it must feel. 

I think try to hold on to the fact that although stage 4- due to the small nodule- it is seen as being treatable. From my understanding, where Lynch is found- immunotherapy is better at targeting the cancer, along with the chemo which is why they have dropped the radiotherapy. 

There is a support thread for immunotherapy on here that you might find helpful.

Immunotherapy support - Macmillan Online Community

I understand that to hear stage 4 is scary and that it is all probably feeling a bit of a shock right now. Do give the Support Line a call if you need to talk things through. 

If there is anything you need, you know where we are.

src60 Are you able to offer any further support to this lady. 

Jane

Hi Rackelski

We wife Janice has Leiomyosarcoma likely origin being a fibroid but was actually found in a lymph node and she has lots of nodules in her lungs - she lights up really well in a PET-CT scan.

She had two types of chemotherapy, the first had to be stopped at the half way point because the side effects caused too many problems - but they were fixable and so then the second chemotherapy put her cancer to sleep - been that way for over 10 years now - she says the cancer is not bothering her and she is not bothering it.

Having been on this journey with her for over 10 years. In that time I have learnt so many things like the importance of reaching our for and accepting help. It has not always been easy. Janice did not want a prognosis - the how long question - but I really struggled with that. What I have come to learn though is a prognosis is generally just an educated guess based on averages - and then who is average? When I did a living with less stress course I came to realise that actually nobody knows what tomorrow will being - as they say yesterday is history, tomorrow is a mystery, today is a gift and that is why we call it the present.

We do have quite a good guide on here talking about cancer and something I find quite useful is Your feelings when someone has cancer

Hope some of that helps

<<hugs>>

Steve

I am the same as you- I have lynch and had my hysterectomy last June and was told it had all gone and the nodes they took showed no cancer. Next scan showed 2 lymph nodes which were cancerous- I was told I would have Chemo and radiotherapy.I had 5 chemo but scan showed it was not working.I started immunotherapy on 1st January and my last scan showed they were decreasing which is brilliant. They class it as stage 4 as is has spread but I am told that if the immunotherapy cannot cure it - it will keep it at bay. My oncologist told me I am living with cancer not dying with it- I will take that  but I do think you should be prepared that this is going to be a long journey. I am living a relatively normal life and have just been put on 6 weeks treatment so I urge you keep positive , I know its hard and there will be ups and downs but we have got this.

Thank you Steve. It is wonderful to hear Janice is doing so well - long May that continue. You have clearly been an immense support to her and now others. I will think about those words and keep taking gifts  

Thanks Ronny. I am sorry to hear you have also gone through so much already. That advice and sharing of oncologists words are reassuring. I get what you are saying about preparing for a long haul and have heard people say need to view it as chronic disease that have to manage rather than expect a cure. I will take the positive view and think that the chemo/immunotherapy seems to be relatively new, very promising and not yet reflected in statistics. Can I ask how you tolerated the Chemo and then immunotherapy? What have they told you about the implications of cancer being in the lymph nodes? I think it being in my omentum means I am stage 4, but hoping that responds well. Head up on onwards is only option isn’t it x hope things go in right direction for you x

Hi Rackelski

My consultant explained that cancer can spread via lymphatic/blood systems and so there is the potential for cancer cells to travel from the primary sight to other places in the body, where they could potentially set up new areas of cancer. The lymph nodes are part of the lymphatic system. So for my cancer I had lymphatic/vascular invasion so cancer cells had been found in the tiny vessels leading away from my womb but had not yet got as far as the lymph nodes. 

Although you have some cancer cells in the omentum which technically makes it a grade 4- it is still treatable with the chemo and immunotherapy and will hopefully respond well. The aim of the chemo is to deal with any cancer whole body wise and the immunotherapy to directly target the cancer. 

I wish you well with your treatment.

Jane