Hi girls! Looking for some inspiration or something along these lines.
So i have stage 1b1 cervical cancer. Our wee family honestly has the worst luck in the world and i feel its never ending right now. I had an open Radical Hysterectomy 2 weeks ago. Surgery went really well and i felt so positive about it!
Well today i have received the pathology results and i need further treatment. I’m devastated The cancer has been successfully removed but i still need treatment as a “belts and braces” effect to ensure it doesn’t come back or spread. It hasn’t spread to lymph nodes and still remains 1b1.
I honestly thought after Surgery and recovery i would be done with it all and could get my life back on track, but here we go again! How do i tell my wee boys?
Sorry you’re going through this - and I can understand how devastating it must feel to have to go through more treatment when you thought you were done and dusted. It’s true that some hospitals probably would stick with the surgery and adopt a ‘wait and see’ approach to follow up. In a sense there is no right or wrong answer to the dilemma, because if even a tiny amount of cancerous tissue has escaped, or not been cleanly removed, it has the potential to spread - such is the nature of cancer. For some surgery is enough - for others the decision is to follow up with further systemic treatment to make sure it DOESN’T come back to haunt you. It has for some on this forum, as it happens…
You haven’t said whether they want to give you chemorads, or just chemo or radiotherapy as a follow up - in either case I would tell your boys that Mummy needs to have some medicine now, after her op, to make sure she stays really well. It’s the best you can do. If you are really unhappy at the decision do ask for more details and if necessary a second opinion.
I was originally staged at 1 and earmarked for a hysterectomy. After scans I was restaged at 3, and told it would be chemorads. I queried why they weren’t going to do an op, and they explained that it’s better to treat the body systemically if it’s spread. It wasn’t until being on the forum and hearing others’ stories that I realised that chemorads, although they do come with side effects, are the gold standard in cancer treatment and will remain so until the world comes up with some less damaging way to treat cancer.
There has to be some reason why they want you to go down this route, other than ‘just in case’ so I would ask for a proper explanation. That said, while I was having treatment there were a number of women who had already had hysterectomies who were undergoing radiotherapy, but not doing the chemo. They seemed to be satisfied that this was the best course of action.
The important thing is that you’re going to be there to see your own grandchildren - whatever you have to do to secure this. X
Your right, there is another reason why they have decided to give me extra treatment but i can’t for the life of me remember why. It was hard to take it all in. I remember the nurse saying it had spread to a something wall and a something else lymph but please remember that this has all been removed during surgery. But the main thing is, its still 1b1 and it hasn’t spread to lymph nodes.
Maybe i should call her and ask her to go through it again?
I’m waiting on an appointment for the local cancer hospital to see my oncologist. I’ll find out then what my treatment plan will be.
Please do call her and ask her to explain it again. We ladies are patients, not medical professionals, and it’s doubly hard to take everything in when you’re emotionally involved big time! She will be used to explaining things to people. Knowledge is power - power for positive thinking and getting well. What you mustn’t do is Google too much - make sure you believe what your professionals say, as they know your case, and there are so many variables. X
So sorry to hear that you’ve to have treatment @JennM1980 I understand how bad it must feel having a plan and it then being changed. On the plus though, at least then you will know that all the precautions have been taken and they have definitely done everything to make sure it is gone and no sneaky bits are still hiding. Children are resilient and all they’ll want to know is that mummy will get better with this medicine, and remember, you WILL .
Let me know what your treatment is, if chemo then we may be getting it at the same centre at the same time as it seems we are under care from same health board?
I was medically in a very similar situation to you 5 years ago so I can offer heaps of empathy in that respect.
My initial staging was 1B1 (1B2 new Figo); my surgeon was very upbeat and told me I had a 90% chance of a surgical cure. So in I went to my follow up appointment assuming good news only to be perplexed when the consultant started to make an undue fuss about my incision wounds (I had keyhole surgery); it was her way of letting me down gently. I still clearly remember feeling my heart drop I when she told me I should have chemo-radiotherapy and I also remember being pretty vocal about my shock and disappointment. In my case the risk for recurrence was a combination of lymphovascular space invasion (LVSI), perineural invasion (PNI) and a close margin.
I’m not the best person to advise how you tell your boys because that’s something I didn’t have to do. It’s possible your CNS will be able to advise or signpost you and I know that Macmillan give advice and support about talking children: https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/talking-to-children-and-teenagers
Thanks so much for taking the time to write to me. The nurse from my local hospital just called me there for a catch up and to see how i was doing. How nice was that?! Recovery wise i feel good! I was hoping i could avoid chemo but apparently not, its in my notes. 5, possibly 3! 5 weeks of radiotherapy too. I’m gutted i just wish someone would pick up the phone and i could hear the words Jennifer we have good news! Its never ending at the moment. I think my husband feels like running away at the moment
Im still waiting on my appointment with the oncologist up in Glasgow. Fingers crossed for some positive news! Yes, lymphovascular rings a bell. Apparently i have an aggressive cancer cell
How did you get on with your chemo and radiotherapy?
Sounds like your nurse is supporting you well so that’s good.
The main part of the treatment is the radiotherapy; the chemo is essentially to boost the effects of the radio and enables less sessions of radio which helped me view the chemo in a positive way. Apart from feelings of nausea (I was never actually sick) I was reasonably OK with the chemo - you will be given anti-emetics which I found worked well. For me the worst part was probably the diarrhoea resulting from the radio but I managed to get through by maxing out on loperamide - and lots of tlc for a very sore bottom! You will be well supported medically throughout your treatment - lots of checks to check your body is coping; it’s a bit like being a VIP albeit not in a way we would ever choose. Also I did get very fatigued and struggled with appetite, particularly towards the latter stages of treatment; rest when you can, I was advised about diet by a dietitian. An unusual challenge that I faced was having to self catheterise because there was a lot of nerve damage to my bladder during my hysterectomy and that in itself added to my initial feelings of being overwhelmed but I got through it because I had to - and you will too. In a nutshell ‘it’s doable’.
Once the treatment started I got into a routine pretty quickly; one minute I was a newby and the next I was a veteran seeing others come in after me.
Hope you get your oncology appointment soon; it feels better when there is a plan is place.
The cancer has been successfully removed but i still need treatment as a “belts and braces” effect to ensure it doesn’t come back or spread. It hasn’t spread to lymph nodes and still remains 1b1.
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i just wish someone would pick up the phone and i could hear the words Jennifer we have good news! Its never ending at the moment. I think my husband feels like running away at the moment 
