Royal Marsden and confused much

Chemo is a big treatment and typically debilitating to the system. I’d imagine your mum’s oncologist is being understandably cautious and not wanting to subject your mum to any more treatment than is necessary, recommending this course of treatment based on her whole medical situation, both physical and mental. Having undergone both external radiotherapy and also brachytherapy myself I can tell you that the whole experience is thoroughly exhausting physically and emotionally and it’s certainly not an “easy ride”. And that’s coming from me who had no major side effects. Is she being offered both external and brachy? How does she feel about it all? Not that I’m suggesting you’re doing this but could I suggest that you make sure you’re very much in touch with how your mum feels about it all and not letting your own anxieties override how she’s feeling.

Hi Gardening guru. If your mum was stage 1 it is likely the oncologist believes this treatment plan is the best way forward and wouldn’t want to put her through chemo as well if it’s not necessary. How does your mum feel about it ? It’s lovely that you are such a caring daughter, I have a wonderful husband and family always there for me, and all have the same pragmatism as I do ( must be the genes! ) but at the end of the day I’m the one who is experiencing it all first hand. Good luck to your mum, whatever she decides 

Chrissie xx

Hi , I had stage 4b Hodgkins Lymphoma so entirely different to you . But like you I was extremely fortunate to be treated at Royal Marsden. My advise would be to trust your team entirely , you won’t find any better. Fantastic hospital I cannot speak highly enough of the care and professionalism that they deliver.

Hi Gardening guru. I'm unable to help I'm sorry to say. I was serous grade 3 but I was never offered external beam radiotherapy, only 3 x brachytherapy after the hysterectomy. (I was 67 at the time). It does seem that Oncologist's opinions differ quite a bit which puzzles me - you'd think there was a "national handbook" for what treatment is offered for what stages and grades but that's not the case.

You're in the best hands and the Oncologist has already said there'll be a CT scan after the treatment and chemo will be offered if anything subsequently shows up which is a positive.

As you haven't filled in the bio as yet on your Mum's journey I can't quite remember how fit she is but I know we are the same age. I didn't find the chemo too bad apart from one day in each cycle when I just went back to bed. I'm coping ok with the PN which might go away. I'm basically fit, walk 3-5 miles daily, eat a varied diet, not always healthy as I love a good curry with samosas & bhaji's. I'm a size 18 which makes me cuddly but not too overweight. 

What does your Mum think about it all? I love it that you're so caring (makes me wish I had a daughter) but has she said she's frightened or anything? I admit I was frightened when I went in for my chemo but was nowhere near as bad as it'd thought it'd be.

Sending hugs, Barb xx

@Marmitefan Thank you. She was there with me and queried why no chemo. I don't think we are against the treatment as such, we just wanted clearer answers and understand how impactful a reccurrance can be. I basically want all the facts. Strange this was I got in touch with a professor oncologist surgeon and she recommended chemo straight away. Cancer was not fully staged in surgery ..no lymph node sampled. She did say that as the tumor was less than an inch across she doesn't think their is any spread. Mom wants chemo as insurance. She became quite animated when radiotherapy was offered. Confused much. 

Hi Mr Anxious lovely to meet you but would have preferred if ir was under different circumstances. They are excellent with best state of the art tech etc. Lovely people too but given the aggressive nature of this cancer mom wants the insurance. Hope all goes well with you and do keep in touch. Best wishes xx 

Hey MrsBJH thank you. It's such a difficult one because it is such a rare cancer there is no handbook....or no one has bothered to write one. I want more than anything for her to have no further treatment but I know that's unlikely. I am for chemo and so is she. It gives her some level of protection at least. 

I am a school teacher, coming up my 20th year in June. Mum is 69 too and loves to cook and tidy my house. I love being a daughter and really Molly cuddle mum at every opportunity.  I can't imagine not seeing her for 2 days. We speak every day on the phone. Mom is obviously retired and enjoys a walk and plants. 'm a homebody and so is mum so lots of TV and the odd car boot sale. Funny I always wanted a daughter too..I only hope I could take this monster away and rid her of the worry. I hope all is well with you? How are things? Physically and mentally? You come across as very motherly too and quite caring. Stay well..sending hugs  and do keep in touch.

Gardening guru, I do feel for you as you are clearly worried for your mum and want to help her make the best decision for her. It’s difficult for us to advise you as we are not medical, plus we don’t know your mum’s medical history, and, as she’s not here to talk to us, we can’t ask her questions directly. You said your mum expressed a wish for chemo, but I confess I did wonder if that might be because you had mentioned it to her- You also said she queried why no chemo - what reasons did the oncologist give, as you didn’t say? The thing is, the Royal Marsden is a world leader for cancer research and treatment, and I can’t help but think that there must be a reason why this is the course of treatment that they feel is best for your mum, given whatever medical history she has perhaps. Chemo doesn’t guarantee no recurrence, and in some cases only very slightly reduces the risk, plus some people may suffer side effects from chemo that can end up meaning it could do them more harm than good,

I would also disagree with you that cancer isn’t fully staged unless lymph nodes are sampled. My lymph nodes weren’t sampled and I consider my cancer fully staged, If there *are* any stray cancerous cells in your mum’s lymphatic system, that’s what the external radio would cover. 

At the end of the day the decision is up to your mum, but if it was me I’d trust my oncologist’s judgement as I believe they’re best placed to know how to proceed from a big picture point of view.

Morning Gardening Guru

I hope you don’t mind me coming onto your post with a couple of observations, though I appreciate that I haven’t had this particular cancer. I have however had a lot of pelvic radiotherapy, chemo and a recurrence with my own cancer, and I have lost my womb among other things so I do have some appreciation of what’s involved.

It strikes me that you are not convinced by an expert at a world renowned specialist cancer hospital on the appropriate course of action for your mum, and I wonder why that is? Do you not believe they are acting in your mum’s best interest and proposing the most effective treatment plan? If you are not fully confident in the plan of action, this might be difficult for you and your mum going forward. I too was treated at a renowned cancer specialist hospital and confess I had the utmost faith in my team at all times-they are the experts, not me, and I trusted them completely to treat me.

Treatment plans will be based on different factors, and it’s not a one size fits all, and the team at the Marsden will have discussed your mum’s case before reaching their decision on the best way forward. Pelvic radiotherapy can be very effective, but is also very hard going in my experience and its effects are cumulative. The Marsden will have taken all of this into account, and have said chemo would be an option if required. But they don’t feel it’s the first course of action required in your mum’s case at this point-did they fully explain why to put your minds at rest? 

Nothing gives any guarantees unfortunately, and chemotherapy is also not a guarantee of no recurrence-it can also be extremely debilitating. I completely understand how concerned you are for your mum, but you say you need to make a decision soon. Have you considered what you will do if you decide against the proposed plan? You also mentioned that you spoke to a professor who did suggest chemo-may I ask if this person is a specialist in gynaecological cancers? 

Personally, I would want to follow the expert guidance from those best placed to know how to treat this. I’m sorry for all the questions but I’m trying to understand where you’re coming from here, and I hope that your mum will be able to make the best decision for herself based on expert advice. 

Sarah xx

Hi Gardening guru

I gather that Oncologists follow the  FIGO guidelines for treatment of gynae cancers   Based on the stage and grade these  also take into account other individual factors for each case. 

There was an interesting BBC TV programme last week made by the mathematician Hannah Fry who was diagnosed with cervical cancer last year. Her own treatment (hysterectomy and lymph node removal) combined with her maths background led her to discuss the issues of cancer treatment with statisticians and oncologists.  It is likely that some of us who receive Chemo or RT might not have recurred anyway but may still experience life changing side effects from the treatment.  At the present time we have no way of knowing who will definitely benefit so usually oncologists will err on the side of caution and give treatment if there is doubt. . Hopefully research will, in the future, lead to a situation where treatment decisions can be more precise.   But till then I think the Oncologists rely on their experience to offer the right advice and indeed I have even known ladies on this forum to be  told that the balance is so even that that they, the patient, should make the final decision.