Chemotherapy dilemma

Hi Bercobertie, I have / am in the same position I also had Total Hysterectomy inc. nodes and large biopsy of the Omentum

on 8th July,  I think all hospitals have their own opinions, and I believe some of the decisions are based on the actual type of cancer you have. In my case my cancer is 'Serous' which is considered aggressive and very unpredictable. and as a result there's not a lot of data to base the decisions on,and of course everyone is different.. For me I was told there had been a 50 % intrusion into wall of womb though still contained so in one hand considered 'Now Gone' the problem is they have no idea if any rogue cells are lurking as its impossible to check everything. I was offered 4 rounds of chemo over 12 weeks ( Taxol and Carboplatin ) after a lot of soul searching I have decided to go ahead to give myself the best chance of full recovery. I am generally fit and healthy ( or was until now lol ) with no underlying health issues so hopefully it won't be too bad. It's looked upon as a belt and braces approach. The way I personally looked at it was the Brachy only targets one specific area, whereas the chemo covers everything... I have my first chemo on 6th September... Good luck with whatever decision to make, and I wish you well.

Thake Care

Hi Nannyjanet

Thanks for your reply, its helpful to know that I'm not alone in having to make this type of decision. I can totally understand why you have made that decision because like you I had always said I would take whatever treatment I was offered.

I think I had a lot to consider, I'm 55 relatively healthy apart from under active thyroid. I have been double jabbed for covid but obviously worry about potential infections as the chemo affects your immune system. 

I've arranged for a call with the macmillan nurse on their helpline to get more information. Like you I want to make a decision I'm happy with.

Wishing you lots of luck with your treatment 

Julie xx

Hi Julie, I was diagnosed with leiomyosarcoma at the end of may and had an open total hysterectomy including my ovaries, cervix and fallopian tubes. My cancer was graded at stage 1a grade 2 with lymphovascular space invasion. I am seeing the sarcoma team at the Christie on the 7th September. My consultant at stepping hill (our local hospital) said they may just monitor me or give me chemo. Leiomyosarcoma is extremely rare and very aggressive so I'm worried sick. The cancerous fibroid was removed whole and the pathology said that there were no breaks in it. I will do whatever the sarcoma consultant suggests, I want to have the best chance of living for a decent length of time. Unfortunately I do have other health issues, I have non alcoholic cirrhosis of the liver and type 2 diabetes. I was admitted into hospital 8 times between September and December last year with internal bleeding caused by the cirrhosis so I'm well and truly sick of hospitals. I hope you get some good advice from Macmillan regarding the adjuvant therapy. Deb

Hi Deb

Thanks for your reply, it sounds like you have had an awful year. I'm so pleased that you have now got a diagnosis and are going to the Christie. My experience with them has been very positive they're experts at what they do so you will be in safe hands. It's positive news that they got the little beggar out whole! They will definitely give you the best treatment for your type of cancer.

I have spoken to a macmillan nurse and a cancer support worker at Maggies Centre about my chemo dilemma. Both were great and explained that whatever choice I make will be the right one for me based on the information I have now. As you know none of us knows what will happen in the future. How great would it be to sometimes have a crystal ball. I'm just waiting for my oncologist to get back to me before I make my final decision. I wanted to know if my treatment plan changed from definitely having chemo to optional chemo because of the result of my tumour markers and secondly because I had grade 3 is that more likely to recur than lesser grades so therefore even if I only might get 5% boost by the chemo it might be worth it. I know I'll feel happier once I have the answers.

Fingers crossed that we both have successful treatments. I wish you all the best

Julie xx

Hi Julie, it must be really hard to make a decision about treatment. I feel that if the sarcoma consultant recommends adjuvant therapy I'll probably take it if it gives me the best chance of living for longer. I'm 61 and want to see my grandsons grow up. I'm counting down the days until my appointment. I asked if I could have an earlier appointment but they said that they want the sarcoma pathologist to redo the hystology as it was done originally by a gynae pathologist. They want all the results, scans, MDT meeting to have been done before I go to see them. From what I've read I'm graded at 2 purely because the cancer is so aggressive.

Let's hope we both get through this and come out smiling. Take care, Deb xx

Hi Julie

i was diagnosed with stage 1b Grade 3 tumour in January. Had my full laparoscopic hysterectomy in March. My surgeon was happy he had removed all the cancer, but I had to see oncology. They felt as a slight invasion of the lymphovascular space (1 or 2 cellsthey said) I should have chemo and radiotherapy. 
As I have IBS I was not keen, but started the chemo. I managed 3 of the 6 sessions. Every time I was in hospital either as day patient, overnight or my last one 4 days. At next consultation with my oncologist, before session 4, we agreed that as it was precautionary, and giving me no quality of life, we should stop and I would instead see him regularly. No radiotherapy due to possible damage it might do to my bladder and bowel. That was in July. I am still plagued with the side effects of chemo and likely to be for some time yet I am led to believe. Extreme tiredness being biggest one. 
However, after regular breast screening, follow up confirmed 14mm tumour. I see that surgeon on 30th. One question I must ask  as so many people have asked me, why did the chemo not get rid of that one?  I think it may be because it is a different type of cancer, but the whole purpose of chemo was to kill off cancer cells.  To prevent spread (they say this is unlikely to be spread). 
I stopped because my quality of life was more important than quantity. I am 69 an have twin darling great nieces I want to see through school, Uni and marriage. Maybe even become a great great aunt!  
Read the Macmillan booklet cured but at what cost ? Available on line. Had I read it I doubt I would have started chemo. 
My late sister had a mastectomy and, ten years later, a lumpectomy, due to other health issues no follow up treatment. She died 20 year later of a massive bleed to the brain. 
it is your decision. Get as much info as you can. Make a list of questions and ask them. Make sure you then have time to consider the answers before deciding. It must be what YOU feel happy with. That is very important. 
good luck

Babs

Hi Bercobertie, I wasn't given the choice as I was 3C but I do recommend that you have the chemo.  I met someone who was 1A and not offered chemo at a different hospital but it then metastised.  The chemo is gruelling, but worth it.  I had carboplatin and paclitaxel and the worst part was leg pain. Later in the cycle i was able to meet friends but days 2-5 were tough each time.  Anything which may possibly reduce the risk of recurrence is worth it. Brachytherapy is nothing like as bad as it sounds by the way!

Hi everyone 

Thank you so much for your thoughts, its been so helpful to get the opinions of ladies going through a similar experience to me. 

I can't thank you enough for sharing your own stories. I'm speaking with the Christie next week and feel a lot better now about the decision I've made. 

Keep well everyone xxx

Hello again, this is a follow up of my previous reply of 2 months ago (is seems longer) i felt so confident at the start of all this but it it has been a nightmare, I thought I was tough, strong, resilient,  It appears not.... I had such a bad reaction to the chemotherapy.

I don't think I have ever felt so bad, the pain was unbearable, a week felt like months, then a stay in hospital too, with breathing problems, x rays then a CT scan to see what was going on,  and up to time of writing trying to shake off a chest infection ???? or is the scarring on my lungs.. a side effect of the chemo known as " broken glass" 

I still don't know,,,,.  all this was after my first chemo !!.. I was only scheduled for 4 , I was fortunate that my cancer was at an early stage and the chemo was a mop up. but after a lot of soul searching, I have taken the decision to refuse any further treatment, as general census of opinion is the negatives are far outweighing any benefit to me.. 

so there we are decision made, I am currently waiting to go in for my wig, yes I lost my hair after 1 chemo, and then I have a couple of telephone consultations, and ( I assume) some follow up in the future. For the first time I now understand why some people refuse treatment to maintain their quality of life.... In some respects I am lucky as all my surgery appears to have been a success, only time will tell. If I was in a life or death situation and my cancer not yet removed then maybe my decision would be different who knows, but it has so I will take my chances and be grateful for early diagnosis and the speed it has all been dealt with.

Take Care everyone, I wish you all the very very best.

Nanny Janet x x x

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Hi nannyjanet I'm sorry to read your post and of the difficult decision you've made as a result of your bad reaction to chemotherapy. I remember welcoming you here about 4 months ago. I think we were the same stage and grade 1b/grade 3 yet my Oncologist just recommended 3 x Brachytherapy so I think I got away lightly.

Nearly a year later I'm experiencing some strange health issues at the moment and have been referred for CT scan, ECG and my bloods have some unusual markers so I wonder was my Brachy enough?

Some people manage their chemotherapy well , other have really bad reactions which make life intolerable.

I wish you well, if you ever want to come back and chat we'll be here!

Big hugs, Barb xx