Hi all,
Firstly thank you for taking the time to read this. It is a bit of a long one, sorry!
earlier this year I found a fast growing lump in my breast. The initial biopsy said fibroadenoma. I went back to breast clinic 2 months later as it had doubled in size and was very visible with discomfort. I requested and the dr agreed to remove the lump. It was 4.5cm lump when removed and at the results I was told it was Borderline Phyllodes Tumour. Further surgery was required to take at least a 1cm excision by the naked eye for 5mm under the microscope. Surgery happened yesterday for this 10 days after the first op.
I am happy with the treatment so far and the staff have been amazing. I understand I may need another re excision if there’s further Phyllodes in the 5mm, also understand I may need or want reconstruction at a later date.
on to my husband, he was diagnosed with a melanoma in July and removed within a week. We believe this had been checked before by a doctor but was never referred to a dermatologist until this year. It was milignant 2/3. He now requires a wide area excision (plastics required) to get the margins. It was 1.8mm depth. They also want to check his lymph nodes to see whether it has spread. Apologies he has not shared with me the exact terminology for his diagnosis and no next step treatment has been defined by the doctors past the next surgery.
I have also been diagnosed with Paroxysmal Atrial Fibrillation in August. Husband has had knee surgery due to cartilage problems and has had other problems such as an eye ulcer. We have had our problems, but please don’t think this is for pity! It’s more to provide a background for my next question which may seem a little over the top to some.
we have both been relatively healthy up until this year. we have a 2 year old daughter and are both around the forty mark. The same as everyone on here looking for advice to do all we can to get ahead of anything else cropping up.
This may sound overreacting but has anyone got an opinion on seeking out a full body scan? I doubt this would be available on the NHS, but would this help with peace of mind to check for any other tumours/lesions (not sure the correct term!)?
As a follow up question, if you have done this, how did you go about it? Who did you use? Was it just a full body MRI or was it tailored for you?
Apologies if this is not the right place, the right topic or if my question is ill raised. Let me know and I will remove it.
Hi Rogue2023 and a very warm welcome to the Macmillan Community but sorry to hear about both your husbands and your journeys.
Your post is fine and let’s try and give you some support based on my experience and what there is available in the Community.
As for the full body scans. I have lived with and been treated for a rare incurable blood cancer (Non Hodgkins Lumphoms) for over 24 years, as this condition can show up anywhere in my body I have had a few full body CTs and MRIs……. tailored specifically for my condition.
Apart from my Lymphoma a few ‘other’ things have been found over the years….. including asbestos, Spinal Osteoarthritis, a massive Hiatus Hernia and just last year some heart problems…… I have had A-FIB for over 8 years following some very strong treatment but last year I had to have a few stents put in.
I did not ask for these scans…. they were all part of my ongoing clinical care.
How can you get them….. no idea - but you can ask your GP as a staring point but I would think that you would have to pay for this privately……, you can also put your question to our Cancer Nurse Team in our Ask an Expert section but do allow a few working days for a reply.
Navigating the cancer/medical journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' pathway both as a patient or supporting family can help a lot.
The Community is divided into dedicated Cancer Specific Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Breast Cancer (just for you to have look at) and Melanoma support groups. These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group click on this link> Breast cancer and Melanoma then once the group pages open click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, or just a listening ear.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
Do get back to me if you need further help navigating the community.
Hi again Rogue2023
Although my 24 years journey sounds challenging….. and at times it was (See my story) I see it as a testament to the incredible developments in treatments over the years.
Back in late 2013 I was in a ‘if this does not work the only route left was a few years (at the most) on a palliative pathway’……. to now over the past 8 years having a few new treatments available if and when my condition kicks off again.
As for the practical and emotional challenges of supporting your husband you may benefit from joining and posting in our Carers only support group where you will connect with others navigating the exact same support challenges.
I have given you some useful routes to look at and explore- all the very best to you and your husband ((hugs))
