Recently diagnosed and scared!

Hello LovinLife. 

You said, "don't know anyone who has been where I am now." The answer to that is both a Yes and possibly a No. This is because many of us have been exactly where you are now, but our emotional responses can be vastly different. To me, every person here is unique, and while I often feel empathy and the thought, "Yeah, I know exactly what she's saying," I never forget that the person talking may not be going through it in exactly the same way I did.

Regarding the stage of the cancer, your consultant should clarify that, and you have the right to demand a clear answer. It is possible the consultant was first waiting to get the results of all scans and tests as these would be required in order to answer this question, but once these are all in, you can insist on an answer.

One area where you and I are definitely different is our views of chemo and RT. Whereas you seem to be more willing to go with RT, I was praying to any god that would listen that RT would not be required and I could get away with chemo alone. There is no right or wrong here; just different preferences. 

Chemo experience is, again, not always the same. Some ladies only require it short term, some are longer term. A lot of us here lost our hair as a result, but not everyone. It depends on the type of chemo as well as the individual body response. 

Due to my own circumstances, I was on one chemo+immunotherapy regime for about 9 months, with the chemo given every week for 3 weeks, then a week rest, and immuno given every 2 weeks. Later I was put on a different chemo combination that was given once a fortnight. That combination if often given once every 21 days, but I was put on what they call, "an accelerated schedule." So again, the length of time overall, the gaps between treatments, all depend on which chemo and what patient.

It can also happen that the plan changes part-way, quantities adjusted, etc. The doctors keep monitoring and will make the necessary changes based on newly evolving information.

There is a lot of general information right here on the Macmillam website regarding side effects, but it may be best to do this research once you know which drug or drugs, as the side effects are not always the same, and even when they are, their chances of manifesting can differ.

Good morning, and yes, I think I understand that whilst friends and family are supportive, it's different talking to people who have been through it.  If you click on my username you can read my profile, but I am now almost “out the other side” having been diagnosed a year ago.

For me, everything became much less scary once I had a treatment plan, and many people also find this. If you're interested, I blogged throughout as it helped me to write things down, the link is here. Hope this all helps, best wishes 

Blog link

I'm also desperate time get me appointment with oncologist and treatment plan. The unknown is terrifying 

Hi Gander.  Like you, I am finding the wait for the unknown to be the worst part. Waiting for results and then treatment plans, waiting for scans etc is stomach churning..... I am dreading the treatment but I have got to the stage where I know it has to be so let me have all the info and lets just crack on with it.....

Hi 

I had this test in July 2021. My tumor was 18 mm with clear lymph nodes. ...as my result came back with a score of 30 I had to have both treatments. Chemo every 3 weeks (4 sessions) then 15 sessions of radio condensed into 5 due to Covid. Finished radio in December.  You will get through whatever comes your way.  The unknown is daunting to say the least but when you are in the situation you can and will do it. I was a healthy person before my diagnosis and you know what I now feel that healthy person again as it's all behind me now. Can't wait to have my hair back.  Stay positive. x

Hi LovinLIfe

I wanted to pick up on the last part of your message about never being healthy again as I felt super angry and upset about this having also been reasonably active with a good diet and weight before diagnosis. 

I was diagnosed in 2019, had a lumpectomy with clear margins. No lymph node involvement. Due to my age at the time (39)  and the grade 3 results I also had the Oncotype test done which came back as 27 so borderline but on the higher side of things. I completed 6 lots of chemo and 15 sessions of radio, loosing my hair in the process as many do and now take Tamoxifen. I also opted to have my ovaries removed.
It certainly isn’t an easy or enjoyable road to take but a necessary one and a doable one, many ladies on here would agree that the waiting really is the hardest part.

I have just had clear results from my yearly mammogram!

It has taken time but I now feel back to my old self, yes there are a few side effects from the medication but they do ease over time and you just learn to adapt and cope with them. 
I really hope that you don’t have to endure chemo or radio but if you do then I wish you all the very best in your treatment and recovery, you really are far stronger than you know and you will be well, fit and healthy again.

Sending every wish and healing thoughts to all the lovely ladies on here going through treatment waiting for results or those like me that are out the other side.

xx K xx 

Hi Beans79

My consultant told me from the very start I would be having RT but last week I had my oncotype-dx results. A score of 35, which means I will also be having chemo. I was devastated. That was my biggest dread!

My cancer histology seems very similar to yours. I'm about to start the 6 rounds o chemo and I am really apprehensive but trying to gear myself up for it.

Thank you so much for your positivity. I'm still scared but your post gives me a lot of hope. Can't wait for this to be all over. It seems such a long and daunting journey.

Xxx

I was also devastated and scared but tried to reason with myself that at least I was throwing everything at it and I wouldn’t worry about the what if’s if I do get a recurrence at any point. (Hope that makes sense!) 

When do you start the chemo? There are lots of threads on here offering great advice and tips for getting through chemo. I would say just listen to your body and do as much or as little as you feel up to. Do you have any support at home?

Im going to try adding you as a friend on here and then I think you can message me directly if you would like to   
Keep that positive mind set and you’ll be out the other side before you know it .

xx K xx