Further treatment post RH

Hi all
I had a RH 3 weeks ago and I have just been told that the histology result is that the cancer is in 1 of the right hand lymph nodes. Can’t remember fully what he said as my head was spinning.
Devastated as I was really hoping the RH would be the end of it but I will now need chemoradiation.
I was told by the CNS healthcare assistant today that someone will ring me Monday with further info as I was asking things that she didn’t have the answers to.
I asked if the staging had changed as I think I read on here that someone else had their stage changed and I think she said 1C3 ? It was originally 1B1.
Has anyone else had something similar and is anyone able share their experience of chemoradiation?
I think he told me 5 days out of 7 radiation and 1 day for the chemo ?really need someone to ring me with further info .
Will I be able to drive myself to and from the appointments ?
I have so many questions and worries.
Will I be really I’ll?
Will I lose my hair ?
Any advice would be really appreciated

Hi Lynzibelle

Devastated also describes my feelings when i was told I needed chemo-radiotherapy during my follow-up apointment for my RH. My post op histology changed my stage from 1B1 (old Figo) to stage 2A. I was node negative but it turned out I had lymph-vascular space invasion, perineural invasion and a close margin.

I had 6 sessions of chemo; every Monday for 6 consecutive weeks. 25 sessions of external radio: 5/7 days over 5 consecutive weeks. Then 2 brachy (internal radio) at the end.

I was given patient transport as I had no access to private transport although sometimes the patient transport was unreliable and I ended up going home on the train. Some ladies on this forum have driven themselves to and from chemo-radio but I’m not sure how ladies who, like us, start chemo-radio shortly after a RH generally tend to manage.

Everyone’s different in terms of what side effects they get from the chemo-radio. Some have an easy time and others not so. I found it hard going especially towards the end but I got a lot of support from my medical team.

You won’t lose your hair if you get Cisplatin which is the usual chemo drug for cc. The only hair I lost was my pubic hair from the radiotherapy but it grew back.

I know how scarey it feels beforehand but it’s all doable and you’ll be tested and managed throughout to check your body is coping and to minimise any side effects

x

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Hi and thank you for taking the time to reply.
How long after your RH did your treatment start ?
Did you have the chemo and radio at the same hospital ?
How long are you there is it a full day I’ve got child at primary school so worrying about dropping off and picking up ? I just need Monday to come quickly as I have so many questions.
How long after the treatment is it before you find out if it’s worked ?
X

Hi

My treatment started about 7 weeks after my RH.

Before you start treatment you will have a mark up scan which involves tiny tattos (I have 3 tiny dots one on each thigh and one on my pubis) to enable accurate positioning for each radio session.

You should also get one or two pre assessment type appointments,

My chemo and radio were done at the same hospital. I think that’s the norm as I there are timing issues to be considered. My nearest hospital with a cancer centre isn’t resourced to co-ordinate the chem + radio treatment required for cc so I had to travel 5 miles further to a hospital with a bigger cancer centre.

The radio sessions whcih include a bladder scan, are quite short - maybe 30 minutes in all subject to unforseen delays etc. Prior to the actual radio you have a bladder scan to check you have a certain amount of urine in your bladder which helps ensure accurate targetting of the radio.

Chemo days are long. I had to be on the ward at 8.30am and I was usually there until around 5pm. It’s mostly because you need a lot of hydration before (and after if i remember correctly) the actual chemo. Hydration is given intravenously and takes quite a while; it’s because Cisplatin can be harsh on the kidneys. You’ll be peeing a LOT on chemo days!

In terms of dealing with your day to day life, childcare etc: beyond friends, neighbours or family who might be able to help out let your medical team know of any difficulties especially your clinical nurse specialist. They will have come across many types of personal situations and will have a wealth of advice and understanding. My team had anticipated my need for patient transport before I’d given it a thought - I was all set to travel on the bus plus train in my usual way!

After treatment there will be a follow up period. I’m into my final year of a 5 year follow-up. Last November my Oncologist said he was very optimistic albeit with a bit of caution that my cancer is cured. Your clinical nurse specialist will be an ongoing point of contact during your follow up period. I’ve rung mine several/many times whenever I’m worried about something; they can fast track you for a check up appointment whenever required.

I know before I started my chemo-radio it felt monumental; so much anticipation it’s quite a relief when it actually starts.

x

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Hi jazza
I’m just starting week 3 of chemoradiation and so far I haven’t been too bad, just very tired and feeling queasy and a bit off.
Yesterday I started to get some pains in my abdomen and it feels tender to touch.
I’ve got a review meeting today where dilators will be discussed ( she told me last week).I didn’t see the consultant last week and he isn’t there again this week, I’ll see a nurse again but last week she wasn’t able to answer my question. I was told that the RH would be my cure, as they didn’t think it had gone to my lymph nodes, the pathology results showed that it was in 1, I keep wondering and worrying how will they know if it has gone elsewhere from a scan following completion of this treatment? If it didn’t show up on the scan before hand. Also how long after treatment finishes until I have a scan and then how long until the results?
X

Hi Lynzibelle

Good to hear you’re coping fairly OK with the chemo-radiotherapy.

In answer to your question, I had my first follow up MRI scan 2.5 months after completion of my treatment. I think I only waited a few days to get the results; my nurse specialist called me as soon as she knew.

How do they know we are clear of cancer from the scans and checks they do? The fact is they can’t be completely sure and that’s why there is an extended (5 years in my case) follow up care plan. I think I’ve read that some ladies have requested scans other than MRI to enable a more thorough check: that’s something you could ask your medical team about if you’re worried.

I’ve had some scans other than routine MRIs on account of episodes of bleeding, so be sure to contact your nurse specialist if you have any symptoms of concern.

I think most of us worry, to a greater or lesser degree, whether or not our treatment has worked. I’ve always thought the term NED (no evidence of disease) is more accurate than ‘all clear’.

In terms of how I view the adequacy of the scans and checks I’ve been offered; I told myself that the medical teams do what has generally proven to be effective as far as current knowledge and experience goes.

x