I had my appointment with the joint oncology team this afternoon, I was given the information that I had Stage 1a Grade 2 cancer which was completely removed with the hysterectomy and usually would not need further treatment.
They explained that when the lymph nodes were tested they check for certain molecules, one of which is P53, this molecule had gone mutant and as such there was a likelihood that the cancer would return. Treatment was explained 4 sessions of chemotherapy and then 3 of Brachytherapy but this is my choice - I could refuse treatment.
The side effects were explained and the only definite side effect is that I will lose my hair after session 2. The others are sickness, diarrhoea, muscle aches, tiredness and tingling in my fingers and feet.
I have a new CNS who deals with the treatment side of things and she is going to call me on Monday to discuss what I have decided. The treatment does scare me a bit but the cancer coming back is not what I want.
Does anyone have experience of having chemotherapy and how did you cope?
Was there anything that helped?
Linda
Hi Linda
I am sorry to hear that you have been told that you need further treatment after your hysterectomy. The post op histology can be complicated and it is not only the Grade and Stage they take into account. Sometimes due to these factors adjuvant treatment can be recommended to do everything possible to prevent a recurrence. Some genetic factors seem to make a recurrence more likely. It is good that you are having a phone call with your CNS on Monday to discuss your options. I recommend that you think of the questions you want to know about and write a list. I did the same several times as it helps steer the conversation in the direction you want and makes sure you get the answers that are important to you.
If you click on my name - you will be able to see my profile and the treatment that I had last year. I had 4 cycles of chemo and that was followed by 25 sessions of radiotherapy.
I was not advised to have brachytherapy as my cancer had not gone into my cervix. If womb cancer does recur I have been told that it tends to come back at the top of the vagina, where the cervix was or in the pelvic lymph nodes. Because of my post op histology I was advised to have the external beam radiotherapy instead. Brachytherapy is given as a very localised treatment, external beam is given to the whole pelvis. Chemotherapy is a systemic treatment.
It is true that you have to give consent for treatment to happen and that is why they have to tell you about all the possible side effects so that you can make an informed decision.
Chemotherapy is not easy but it is doable. There are side effects but I by no means suffered all the side effects that were mentioned. Most of the side effects that I did have were treated with medication. There are different types of chemotherapy and everyone is different in their response to them. I had paclitaxel and carboplatin for 4 cycles. I was in hospital from 8-530 ish for the first day of a 21 cycle. I felt most unwell the first week after chemo and then started to feel better.
I did not lose all my hair but opted for scalp cooling. My hair did thin but I had no bald spots. I did have a wig and scarves on standby but did not need them. If losing hair is one of your big worries then I would advise that you ask your CNS about the cooling cap and whether you can use it. With scalp cooling you do still shed some hair and I did around 2 weeks after the first chemo. Body hair went at the same time. I believe that I would have had total hair loss without the cooling cap. With it, I had regrowth during chemo.
I did have some tiredness, upset stomach and aches and pains but was given medication. I had some neuropathy symptoms from the first cycle and my doses were adjusted to prevent it worsening. The other thing to factor in is the risk of picking up infections and to deal with them quickly if you feel unwell. If you go ahead then they will talk you through the treatment in more detail but they normally give you a number to call 24 hours a day and if you do feel unwell they can get you straight into hospital for treatment.
I felt I had to put my faith in the team looking after me, I had trust in my surgeon and when he said I needed chemo and radiotherapy - I went ahead as I was more scared about recurrence than the treatments. The thought of going through the treatments when you had thought the hysterectomy would sort it is scary and it can feel overwhelming when they start talking about side effects etc. However I found the best thing was to ask lots of questions and to put my trust in the nurses looking after me. They were lovely and chemo was nothing like I expected it to be. It wasn't great but it did not go on for long in the grand scheme of things. My surgery was April, chemo was May-Aug and Radiotherapy was Aug and September. So 6 months treatments to do all I could to prevent it coming back. Yours would likely not last as long as I had 5 weeks of daily radio whereas the ladies on here who have had brachytherapy seem to have 2-3 treatments.
Looking back I am glad I did it. If the cancer comes back I know that I did all I could do to prevent it. I did have to face a lot of fears and that was not easy but you will be well supported if you go ahead.
Hope this helps a bit but if you have any questions please do ask.
Jane
Hi Linda
Am glad you are going ahead with the treatment. I do honestly believe that they wouldn't suggest it if it wasn't needed. Mine also reassured me that at anytime I could stop the treatment if I didn't cope with it and that gave me back a feeling of control. For me the first one was the hardest as you are not sure what will happen and once that one is done, I did find it easier as I knew what to expect.
It's the paclitaxel that causes the total hair loss, however the scalp cooling worked for me and I would say it is definitely worth considering. I would have found it very hard to lose all my hair. It is not vanity but its all about identity and looking a well as I could throughout treatment. Some people prefer just to brave the shave but that wasn't me.
I didn't have any pre existing conditions other than asthma but didn't notice any change. They have a lot of of options though if you do experience side effects such as medication/ altering doses etc. I found that during my cycles the days were the same with regards to effects so by the next cyclesI was more prepared. I did find that the tiredness and a few effects did accumulate with each cycle- but not everyone does.
Good idea to check with your GP re the infection and the vaccinations and to get them out of the way before treatment. A mask is also a good idea.
I hope that Monday goes well for you and if there is anything you need please just ask.
Jane
