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No idea what’s going on anymore!!!! Radio/Chemo

13 REPLIES 13
Lunatic21
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

@AnnieV  I’m so sorry you are going through what I did! 
I’m writing this whilst sitting in the historical car park waiting in session 13/15 of radiotherapy. 
The decision was so difficult but I was given all the information for and against chemotherapy. I discussed with my consultant my BCN and my family before deciding not to go down that route. 
I am on tamoxifen for 10 years/ yearly mammograms/ no spread/ all tumour removed first time/ and scored 41 on the ocon test….. 

At 44 and having gone through 6 months of this I decided to take the risk as it was so so so so so low! 
I hope you get lots of support too if this decision is yours to make x 

I need to get my life back!

AnnieV
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

@Lunatic21 

Please may I jump onto this thread? I was told a week ago that while the surgery part was successful (clear margins, no spread) my cancer was regraded to grade 2 & chemo is now a possibility. Did not see that coming! I am currently waiting for results of oncotype DX test. After reading this it is worrying that the decision could be down to you if results show you are borderline risk. Did you get guidance to help you decide? How are you doing now with whatever treatment you went for? The waiting & not knowing is excruciating xx

DAB72
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

@Lunatic21 I’m sorry you have had to make the choice yourself it is a hard one! I am in a similar position, grade 3 IDC 16mm. My tumour was also removed with clear margins and clear SLN biopsy but my Prosigna test came back as high risk (68). While it was recommended I have chemo it is still my choice and it would be in addition to the radiotherapy and Tamoxifen. I’d already decided if the test came back high I would have the chemo but must admit if it had been intermediate like yours I’m not sure what decision I would have made, so I really feel for you!! 
Whatever you decide there’s no right or wrong go with your gut; everyone’s circumstances are different. Wishing you all the best with your treatments. Take care x

Lunatic21
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

So it’s my decision to have chemo or not???

 

 I’ve come back as intermediate in the prosignia score…. What another horrible part of the cancer crap.

I believe I am rejecting chemo in favour of radiotherapy, 10 years of Tamoxifen  and 5 years of mammograms…. Hopefully this is the correct choice xx

Evie-S
Community Champion

Re: No idea what’s going on anymore!!!! Radio/Chemo

@Lunatic21 - oh that’s hard when the decision is yours. Did they give you any guidance? I wasn’t given an option, well I guess I was in theory, but I was pretty much told it was a definite as I had node involvement. Why don’t you give the nurses on here a call and talk it through with them? I wish I could help - I can discuss chemo, but not sure I can help with your decision. But I’m happy to listen and discuss things with you if that would help. Sending hugs, Evie xx

Lunatic21
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

So has my consultant appointment to get my Prosignia results…. And I fall into the intermediate category: 41 !!!

Aaaargh I have to decide myself if I want chemo?  Who wants chemo? 

Evie-S
Community Champion

Re: No idea what’s going on anymore!!!! Radio/Chemo

@Lunatic21 - I agree with @Kitkat23 advice, my radiotherapy also started a week after the planning session. Evie xx

Lunatic21
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

Thank you! You are the first person who has told me it’s been done quickly! 

Kitkat23
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

Hi Lunatic

sorry you’re in limbo.

at my cancer hospital, you start rads sessions within a week of planning....I started 4 days after planning.  
hope you get sorted soon x

Lunatic21
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

Thanks Evie, 

 

Spoke to the BCN yesterday she wasn’t too useful but is lovely! She sent a info leaflet on the testing through…. Not very detailed though! 
she did say I need to have radiotherapy within 12 weeks of surgery so not to panic. 


Today I also received my appointment for my radiotherapy planning session…9th July which is another 3 weeks away…. surgery was 21st April…so they have until 14th July to start the radio or isn’t not worth it????? Is it normally started that quickly from the planning? 

I don’t get this anymore. 

Evie-S
Community Champion

Re: No idea what’s going on anymore!!!! Radio/Chemo

Hi @Lunatic21 - I too wanted to drop in and send love and hugs to you. Simplyeve has sent good advice, I agree totally that the mental side is at least as tough as the physical. You really shouldn’t feel like you are annoying your team, and they definitely shouldn’t make you feel that way. It is your body and you have every right to ask questions and find out what is going on. Some people prefer not to know, but I did - I’m sure my surgeon wanted to hide as I arrived with my list of questions!

I really hope you get some answers today. Once you know the plan you can start to get your head around it. We are right with you. Evie xx

Lunatic21
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

I have left a message with my BCN in the hope of a call back today x 

 

I feel like I’m annoying then unnecessarily but I have taken today off work as I’m very stressed and confused from yesterday! 
I’m grade 2 and all removed at surgery with no spread so didn’t have any indication of chemo until yesterday! 

Just more limbo….5 months so far!

simplyeve
Member

Re: No idea what’s going on anymore!!!! Radio/Chemo

Hi Lunatic21

I am so sorry to hear your treatment plan has been less than straightforward,  I too was left in a stat of flux in that I was Grade 3 and HER2 positive and every piece of information I read indicated I would be given chemotherapy, but it wasn't until my final results in May that it was officially confirmed despite the fact that I had questioned it several times.  The waiting and uncertainty is so stressful, perhaps you could phone one of the Breast Cancer nurses from BCN and see if they can offer any information or suggest the type of questions to ask.  If not your key worker should be able to explain the need for further testing more fully.  Either way I think you should contact the key worker and explain how stressed you are becoming.  I think if we "appear" to be coping then we are only given our basic results without clarification.

I am sending you some virtual hugs and lots of love, try and stay strong but also be firm in asking for a fuller explanation of your results so you can get yourself in the right mindset for whatever the outcome is.

 

🤗🤗🤗🤗🤗

Lunatic21
Member

No idea what’s going on anymore!!!! Radio/Chemo

I’m so lost today: after thinking I was on the final step of this cancer sh!t I have today received a curve ball!

(diagnosed with grade 2 IDC 24mm ER+ HER - then surgery WLE and 2 SLN tests: all clear,  no spread)


My tumour is now being sent for further tests to make sure I don’t need chemotherapy ( it has shrunk from 24-18mm on 10 weeks of tamoxifen) ….2 more weeks waiting before they can either start radiotherapy 3 weeks after that or begin chemotherapy sessions that have never been mentioned until today!

I was also told I would have 5 radio sessions but today was told 15! 

Cancer should come with a mental health disaster warning 🥺

I was diagnosed in January ffs!!!!!!! Just want all this over so I can start my life again 😟