Ive been on this cancer journey id say from 16 years ago although i had my thyroid removed 28 years ago.At the time i didnt acknowledge that it was part of the bigger picture that was to follow.the thyroid was pushing on my windpipe.so it had to go.
I had kids and was urged to get mammograms earlier by a loved one due to family advice.i was eligible and started at 40.42 grade 3 was found in breast , had removal and breast alignment.i was diagnosed with cowdens syndrome, at the time i didnt really know but used to look at American sites.i find myself helpjng professionals regarding my 1 in 200000 .im a rare bird.8 years ago, i felt something wasnt right in other breast although mamograms were clear.a grade 2 was found.i had a belt and braces aporoach and this so and so was found on my kidney.so ive opted for monitoring as consultants believe it is so slow growing.i also had 2 spots on my lungs which are now nodules ' subplureal nodules' which has been classed as benign so have ct scans for that to determine what it is for ' peace of mind'.im told it could be scarring from chest infections.
Im very grateful to nhs, monitoring me , but im trying to keep my anxiety in order.anyone got any advice on anything....i dont want to google but knowledge is a powerful thing sometimes.i try and box it and bring it out of the cupboard when and if needed.
My family are aware of this but i prefer to just be me out of my family.i.e.not chat about it
All the best to you all on your journeys.this cancer journey is a right old roller coaster.
Kind regards
Good afternoon, Muvva.
Firstly welcome to the group and hopefully you will find it like many others a supportive space. I am Jamie and one of the Champions for this forum.
I am happy to chat and support where possible with the kidney side of things. I see you have already been proactive and joined the breast cancer group too. I am sure you will get some great support there aswell.
You sure are a rare case and your profile was a interesting read. Thank you for sharing your journey with us.The clinical team have been keeping a close eye on you and monitoring closely. I am wondering if they gave you clear information on if they think the kidney cancer is related to the breast, but it can also be related to the Cowden Syndrome too. Thankfully the lung nodules are beign and being monitored too.
I had kidney cancer and was fully removed in December. I had a scare witj the 2 ct scans as they showed I had a small lesion on my right lung, but this is been confirmed it is nothing to worry about. It is potentially scar tissues. Now on immuntherapy for the next 12 months.
I fully understand it being difficult at times and even though we do our best to remain positive in front of those closest to us. It sometimes add that extra bit of pressure too. You have done so well at keeping it together, and it was amazing to read you are help other professionals to learn about your rare syndrome.
If there is any specific you need support with let me know, but always happy to chat too.
Welcome and all the best,
Jamie
Helpline number 0808 808 00 00
7 Days a week. 8am to 8pm
Well hoovering is one way to keep the mind and body moving. Hope you was doing this to some feel good music too. If you get the right music, those carpets get extra clean lol talking from experience.
Its the not knowing and even though you have been dealing with these risks over the years. It does not mean the anxiety, worry, stress and over thinking goes away. I would think if you didnt have some anxiety or worry, that would be more concerning as such.
Since being part of Macmillan and also having my own cancer journey. Whatever cancer type, grade, size, history or risks. We all share a common ground we can relate to. Least they know the nodules are there and you only have 2 weeks for the scan. Then its the stress of waiting to speak about results. So happy to chat about anything if you need to take you mind of things to.
So for now let's count down the next 2 weeks. Have you got things plan to keep you busy during the day?
There is a great group called awake all night. There are a lot of members in there we all chat about everything and anything. Its for those who may struggle at night to sleep. I have included the link here. Awake and up all night
Best wishes,
Jamie
Helpline number 0808 808 00 00
7 Days a week. 8am to 8pm
