Welcome to the forum Sillyhat although I'm sorry for the reason you are posting.

I know you're looking for others who may have been in similar position or experience and I just wanted to put you in touch with our lovely [@Jolamine]‍ as I think she will be able to share some words of wisdom and advice.

Hopefully other members will pop by to say hello and share their experiences with you as well but if there is anything you would like to discuss with someone in person our cancer nurses are just a phone call away on 0808 800 4040. This number is free to call and lines are open Monday - Friday between 9a.m - 5p.m.

Kind regards, 

Steph, Cancer Chat Moderator

Hi Sillyhat,

I see that this is your first post on Cancer Chat, so may I first of all extend a very warm welcome to the form?

I am sorry to hear of your recent diagnosis and of your current predicament.

You sound like me – nothing straightforward!  It is usual to wait 7 – 14 days for results. I admit that the waits are frustrating and cause us much anxiety whilst waiting, but a lot more goes on during this time than we realize. Once the results are back in the hands of your consultant, your case will be discussed at an MDT meeting. This is usually held weekly and, is a time when your multidisciplinary team(MDT) get together to discuss your cancer and the best way of treating it. This will then be ready for you to discuss with your consultant at the same time as you get your results at your next appointment.

Can I ask your age and the reason for your prosthetic arm? I do not have any prosthetic limbs, but I have had several parts of myself surgically removed and have two replacement knees. I lost my mother to breast cancer 20 years ago.  I was diagnosed with breast cancer 7½ years ago and had a second bout 6½ years ago. The first time I had a lumpectomy and 6 lymph nodes removed and then took Tamoxifen for a year. None of my nodes were cancerous.

I was advised to have radiotherapy at this stage, but due to certain procedural issues, this didn’t happen. The second time I had a double mastectomy followed by Letrozole. This time my surgeon told me before my operation that he would try to take a couple of nodes, but that he didn’t want to take too many, for fear of causing Lymphoedema. He took some tissue away, but it just contained fat and no nodes.  Not long after my second operation I developed Lymphoedema in my good arm and later this spread to both arms.

I now attend a Lymphoedema clinic for manual lymphatic drainage (MLD) for 2 weeks out of every twelve. During these 2 weeks my arms are initially measured from the tips of my fingers to my shoulder. I then have MLD and bandaging twice a week for those 2 weeks. I look like the Michelin Man for these 2 weeks. At the end of this my measurements are taken again. For the 10 weeks in between I wear an elastic sleeve from fingers to shoulders by day and a thicker waffle type sleeve at night. Unfortunately, this hasn’t managed to reduce the swelling, but it has kept it in check. If you can avoid getting Lymphoedema, I would strongly recommend that you try to do so. Wearing these bandages all the time is not pleasant, but is necessary.

Due to the Lymphoedema, I cannot have bloods taken from my arms any longer. Neither can I have injections or my blood pressure taken from my arms, for fear of making the Lymphoedema worse. This means that everything has to be done via my feet. I spent the first 5 years desperately trying to find someone who could do this for me, without success. I eventually found a specialist liver nurse in my local hospital, who now does this for me. Even he has difficulty in getting blood at times, but he now bathes my foot in warm water for 10 minutes first and then uses a machine to detect the best veins to use. He has been a real find and nothing seems to be too much bother for him.

I am not a medic, but have learnt to think laterally for some of my own cancer challenges and my Lymphoedema has been one. Would it be possible for you to do the same and, have any treatment administered via your foot instead of your arm? It might be worth asking your Oncologist this when you see him/her.

It would also be worth doing as Steph has suggested and giving the nurses on this site a call. They will certainly be more clued up on whether it is possible to use your feet instead of your arms for chemo.

Don’t be put off if some people dismiss this out of hand. For the first 4 years of my cancer journey I got spun all sorts of yarns by different doctors, with comments such as “it won’t do any harm to take it from your arm just this once”, “I’ve never been taught to take blood from the foot, so I’ll just take it from your arm”. I’ve also been referred to the nurses to take blood and, when they refused to take it from my foot, brought back to see the consultant, who offered to do it himself. This was the most painful time I’ve ever had blood taken! It was obviously some time since he last took blood, but at least he was willing to try. I was also referred to half a dozen ‘specialist nurses’ in different hospitals, but all refused to treat me, so the relief of finding someone who was finally willing to take care of me was a tremendous relief.

I can fully understand how you just want to get it all over with, but would advise you to hold fire and to be guided by your care team. The delays are in your best interest and will hopefully get you the best possible outcome in the long run.

If you would prefer to discuss your case in private, you can always private message me. If you are happy enough on the open forum, that’s fine by me too. Please stay in touch and let us know how you get on. We are always here for you whenever you want to talk.

Kind regards,

Jolamine xx

Hi Jolamine

You seem to have had a lot of problems and are still battling through.

I realise my 'post' refers to 6 years when I thought I'd written 60! I was involved in a hit & run accident as a child and in those days there was no microsurgery so my arm was amputated. I have been fiercely independent and done everything I've wanted to do - changing terry nappies (with safety pins), knitting and driving. I think this strength has helped as I had no problems with the post-op exercises and had full mobility from day 1 - though obviously didn't do anything too vigorous!

I found the staff have all been very concerned about the risk of lymphoedema - I had a radioactive injection and blue dye injected before the operation - to aid locating nodes. As yet I've had no 'cording' and the slight numbness passed within a few days. I had a cannula in my foot for the operation - one nurse squeezed my leg and the anaesthetist fitted it - quite painless. Once I found out I'd need chemotherapy just in case any other nodes were cancerous I thought I'd better have a my 1st ever flu jab and the nurse gave me it in my thigh willingly.

Not sure how I could put a tight sleeve on (presumably made like surgical stockings) by myself - or take it off for that matter! 

As for the chemotherapy, the oncologist suggested the portacath - an operation done by a radiologist under a local anaesthetic I gather - so that blood out/fluids in will go through the device embedded under the skin near my neck/heart/jugular vein. Not sure how it works but it can stay in for 2 - 6 years it seems.

All my 'waits' have been 2 weeks +. This time I rang up after a week but am still waiting to hear of the operation date (or even if they are going to do it!). I'm going to discuss wigs next week - I need to be doing something instead of just waiting!!! I need to work out how I can put one on single-handed.  

Thanks for your reply. I will try and check this website more often and may give the nurses a call - though I'm useless on the phone - you can't re-read and change conversations!   

Thanks, Steph. I have replied to Jolamine and answered some of her questions. We both agre that waiting is a dreadful time. I have visions of cancer cells swimming around my body as I sit here - being told it was a grade 3 was worrying enough without all this waiting - 6 and a half weeks after the operation with another 2 or more to go before I can start the chemotherapy - how far will the cells have moved/grown in that time? The specialist nurse said the chemotherapy was probably a belt and braces job as only 2 out of 4 lymph nodes were affected and the waiting period was normal but my mind won't acept this - especially when I wake up at 3 or 4 a.m. I may phone the nurses but I'm not good at phone conversations - I lose the thread and forget what I want to say. I like to write as I can double-check things and rewrite badly constructed sentences - and I can't do that on the phone! 

Hi Sillyhat,

I am sorry to be so nosey about your amputation, but I was finding it difficult to see whether or not it was connected to your breast cancer. I think that you will agree that the difference between having it done 6 years ago and 60 years ago is quite different. I am glad to hear that there is no other medical condition underlying this. You sound like a very strong and positive person, judging by how you have coped with this draw back for so many years.

There are various devices to help put on the elastic sleeves and the ones I wear at might are quite new and close all the way up the arm by means of Velcro strip. I cannot imagine that either would be easy to apply with a prosthetic arm.

The busier you can keep yourself during this waiting period the better. I am glad to see that you are looking at wigs next week. It should be a little easier to put these on with one arm than the sleeves.

I only suggested phoning the nurses so that you would get a quicker reply. You can always write to them on this forum in the ‘Ask the nurses’ section, but it can take a few days to get a reply. You can’t re-read and change conversations, but you can have all your questions written in advance and just read them out. I even do this for my appointments, to ensure that I don’t forget to ask any important questions

I believe that there are a lot of lymph nodes around the neck area, which is probably why your oncologist is not keen to insert the porta cath. 3 – 4 am is a common time for our minds to go into overdrive. Have you tried mindfulness to overcome this? It didn’t work for me, but many people find this helpful.

I sincerely hope that you get a date for your results this week, as I can just imagine what is going through your head. Do you have good support from family and friends?

Thinking of you,

Kind regards,

Jolamine xx

Hi Sillyhat, 

Unfortunately I can't answer any medical questions but as Jolamine has mentioned in one of her posts, if you're not comfortable chatting on the phone you can get in touch with our cancer nurses by posting in their section of the forum just here. 

Kind regards, 

Steph, Cancer Chat Moderator