Hi I have had a biopsy in a lump under my arm and was told it is secondary cancer. I have had a Pet scan and am waiting for a MRI. I have no idea where the primary is or what stage.

Hi DaisyRed, I know what it’s like waiting for biopsy results and scans. My primary was not found but my biopsy on a lymph node came back a few weeks later as melanoma. I had gone to the hospital from my GP with a suspected hernia as I had a big lump that came up in my abdominal area, so not in my arm like you have. In hospital Lymphoma was mentioned as the scan showed many lymph nodes affected. I was advised not to google and just try to live life as normally as I could until more was known. I am glad I didn’t google as it wasn’t Lymphoma it was melanoma, apart from having pale skin and red hair nothing else made sense to me getting that diagnosis as I was not a sun bather but had played a lot of sport in my youth. I am not suggesting that as a diagnosis but suggesting that there is little point in second guessing it can cause more anxiety.

There is however a big reason to learn how to wait patiently and keep anxiety to a minimum. In one of my limbo periods waiting for treatment to start I watched a box set of ‘House’ the series with Hugh Laurie as an American Dr who diagnoses difficult illnesses, I found it got me in the mind set of how Drs have to make an educated guess and then rule things out of their thought processes to get a best fit answer. I hope they successfully find what will work for you so that you can start treatment and I hope you have already got a way to make time go faster and not drag during the periods of uncertainty.

Hi KTathome

Thank you so much for your reply. I don’t know any one with cancer that I can talk to so I really wanted to connect with someone. My husband is telling g his friends but I just can’t bring myself to tell mine especially as I don’t know what type of cancer I have. When I had a biopsy the doctor said he thought it was lymphoma so I googled it and although there are so many different kinds I decided it was Hodgins so I was prepared. When he said it was not the primary I was back to square one. You are right googling is a pointless exercise but I am trying to look for a mild cancer. I have now decided it is spleen cancer because I understand they can take it out and you don’t need it. How crazy am I? I have now decided to as you say not to second guess and just put my head in the sand until I get a result. I have my MRI tomorrow and the results on Friday. The weather forecast is good next week so I will try to make the most of it until Friday. 
I hope you are getting on OK with your treatment for your melanoma and it can be cured. Don’t know much about it, will have to Google it!  Your reply is much appreciated. We used to watch House and what a good series it was. I am getting into ‘Once upon a Time’ to take my mind off of everything. The main character Emma is Cameron in House. Again thank for you reply.

Hi DaisyRed, I hope your MRI went ok, I had one to check on my liver last year. I had to wear a mask in that enclosed space and breath to order to keep the lungs out of the way of the image. It wasn’t the nicest of experiences.

My cancer experience is in my profile which you get to by clicking on my user name. I have been told my cancer is incurable but with new treatments it doesn’t feel like that as there are some promising long responses out there. I think the Drs refer to curable when they can remove the primary cancer with surgery and give drugs to help prevent any spread. With me it had spread to my lymph nodes and to many of them so surgery wasn’t advisable but I had a targeted drug and then immunotherapy which has kept it under control for the last few years. I had a CT scan on Thursday to see how it has spread or resolved in the last 3 months and a week Wednesday I discuss a clinical trial as it’s likely it’s time to move off the drug I’ve been on. 

Its always better to get bad news followed by what they are going to do about it so that the positive momentum can continue. So I’m a bit in a holding pattern like you at the moment waiting to see what is next.

 I hope your wait until Friday is not too bad, please ask me any questions, and let me know how you get on. The Macmillan support line will have a wealth of experience to to tap into, its open 8am to 8pm on 0808 808 0000 

Hi KTathome

Thank you for your good wishes and reply. I have looked at your profile and you have been through it. I had the MRI and I wasn’t too bad. Then I decided to take your advice and not think about anything until Friday. I went back to breast clinic and they told me I definitely did not have breast cancer and it was melanoma as the secondary and could not find the primary. They said the lymph system was moving the cancer around hence the lymph nodes under my arm being enlarged. Other than that they would not give me any more info saying they would refer me to the skin cancer clinic. I will have to wait until they make me an appointment in two or three weeks. They would not tell me anything about melanoma, if it is not a breast issue they will not get involved. I asked about my lymph nodes and what sort of treatment I could expect for that and the nurse said just forget about them for the time being, wait for the appointment. They will look at my scans and notes and get in touch to discuss the way forward. 
I will be reading your profile again and again as yours is melanoma as well. I am still in shock. I feel so drained at the moment. The doctor was running late and I had to wait 1 1/2 hours to see him. That time felt like forever. I was only in with him for 10 minutes and I asked him if my cancer was curable but he said he didn’t know as it was not his area. You will have to wait for another week and a half to find out your way forward. The waiting is so hard.

Again thank you for your info.

Best Wishes

Hi DaisyRed, I’m sorry to hear you seem to have the same diagnosis as me occult primary metastatic melanoma. I remember when I was told I laughed in disbelief. I was then sent to a dermatologist to see if they could find the primary, which they couldn’t and explained it may have resolved itself or regressed years ago. I felt really ill when I was diagnosed, but I had a double whammy diagnosis of diabetes so I can never be sure which symptom related to what. I remember being so scared after my first oncology appointment as they said I was not well enough to start cancer treatment yet, but they put me on steroids which quickly made me feel better and get a fighting spirit back. I used to worry about the primary not being found and them came to terms that perhaps it was good news that my own immune system had dealt with it on its own. I then felt that as the melanoma treatment that I had deals with the whole body again it didn’t matter that the primary wasn’t found. 

I knew nothing much about melanoma at my diagnosis, just that it was to do with the sun. I had stayed away from the internet but then made up for it by reading the info sections on Macmillan, cancer research and Melanoma Focus. I’m not sure what you want to do but here’s a link to some Macmillan information https://www.macmillan.org.uk/cancer-information-and-support/melanoma/advanced-melanoma

I am hoping that the amount of melanoma you have is small and that you still feel well. There is promise that treatment can be effective for a long time and feel like a cure as life continues unaffected for some, and we all have to have hope that we are going to be those lucky ones. I was wondering if you were going to join the Melanoma forum now.

Good luck with coping with your wait and I’m hoping for good news for you.

Hi again. Thanks for your reply. I still feel well, a bit tired and I am getting night sweats. But that may be my age, haha. Thank you for the link. I will join the melanoma forum. I am still a bit confused by it all. My lump appears to be getting bigger but that may be my imagination. It is going to feel like forever waiting for an appointment with the skin cancer section. I would like to know what sort of treatment I am likely to get. I also don’t understand the treatments and their side affects. I am trying to pretend everything is normal, making the most of being ignorant. We were due to go away next month for three months. I am hoping that if treatment is stopped and restarted I can get away in the middle. If I have pills do you take them all the time. How long before they want to check on your progress. Will they look at my skin to see if they can find a mole or something where it might have started? So many questions go through your mind when you don’t know what you are dealing with.
I feel for you being diagnosed with diabetes at the same time. My husband has that but he thinks he doesn’t. He is constantly told to loose weight but he still doesn’t think he is fat. He is what I call ‘prosperous looking’. He has lost some weight. Trying to get him to eat regularly was the most difficult. I don’t buy sweets any more! Anyway I am getting off the track now. 
Hope you get on OK on Wednesday at your review and it is positive. 
Thanks again for your help.

  Hi DaisyRed, you know you could ring the Macmillan support line on 0808 808 0000 and they can listen to what uncertainties you have offer to send out any relevant leaflets and perhaps put you through to a nurse. 

You've seen my profile so I suppose I’m thinking they might do a skin check to try and find a primary, they didn’t find mine but the useful thing about that appointment was putting me in touch with the skin cancer nurse who then liaised things with me until I saw oncology. Am I right in thinking you get MRI results on Friday or was it the Friday just gone, I’m afraid I’ve been in a bit of a whirl of my own recently. Who is or did give you the results, I was thinking it best for that to me a melanoma specialist who can then tell you if they need to get you to see a surgeon to remove any nodes as ifyou only have a small amount of melanoma that could be the best way forward. They may then give you the tablets if you are BRAF positive or ipilumamab and Nivolumab if not. 

You’ve probably found these links but thought I’d put them in anyway.

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/dabrafenib-and-trametinib

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/immunotherapy-for-melanoma

The tablets were given to me monthly, with a visit between each issue to check how I was and as there can be side effects you need to report and perhaps have a break in the tablets for a few days. I had a scan after 2 months to see how they were working, so I know I’m raising a lot of questions for your 3 month break. The tablets have a strict regime over when to take them. I am going to start these tablets in October/November after surgery so I need to find out if I have to come in to hospital and hang around for the hospital pharmacy or if they have worked out another method. The tablets are very expensive so back in 2015 when I had them they had a special card the dr needed to issue to be able to collect them from the hospital pharmacy. So if you get the tablets first you have to update me please on how things go to give me a heads up.

Oh I should have said my Wednesday appointment was brought forward a week as they had the scan results and an MDT days after my scan was done. I knew the lump was growing and scan says it’s 33mm and I have 7 other lymph nodes affected in various parts os my abdomen and pelvis. So Pembro is running out of steam is how they put it so we went through my options of Dabrafenib and Tramatenib, Ipilumamab, and a trial that they are doing in my hospital so I’ve had a lot to think about I think I will post soon in the melanoma group.

Hi KTathome

thank you very much for taking the time to reply to me. You have so much going on at the moment, I can understand if your head is all over the place. I went last Friday to the breast clinic because they had the results of both MRI and PTscan. They would not give me anymore information than I had melanoma with unknown primary. They are going to refer  me to the skin cancer dept so I have to wait to hear from them. I have a contact nurse from the breast clinic I can get in touch with until I am passed over but she just says she doesn’t know anything or will give me any advice or information. Just says she doesn’t know and every case is different and she only does breasts. I am only trying to gather info so it is not such a shock when I am told the way forward. 

I will keep an eye out for your post on the melanoma group and good luck. Really appreciate you help and the links.

Hi DaisyRed

I am so sorry about your diagnosis, I am in the exactly same situation as you... I was ready to be told I had lymphoma but when the result of the biopsy came, it was a surprise for me and for the GP... carcinoma. So far I had 2 X-Rays, 1 CT scan and the primary wasn't found yet. I have been waiting for a PET scan to be booked at Colchester hospital for  a week but so far I haven't received any letter with a date to do this. I Have a radiotherapy appointment booked for Wednesday the 10th of August and I have so many questions... I wasn't told the stage of the cancer, only that it has spread to all my lymph nodes.

I know now that the night sweats and the fatigue are caused by the lymph nodes metastases in our cases as these are the same symptoms of lymphoma. 

I just can't bring myself to understand how this has spread so quick and so far, although I have been complaining about the night sweats and the fatigue for several months but the lumps only started to appear 2 months ago.I

I hope everything goes well for you and that you can start successful treatment very soon.

Please lets keep in touch and share updates and experiences.

Take care

KY

Hi KY

i am so sorry you are going through the stages of finding out what is happening to you. I felt that if one more person told me everyone is different I would scream. I have melanoma which they found out after doing a biopsy on the lymph nodes they took about, 40 out in total from both underarms. They couldn’t find the source which doesn’t really matter once it has spread as it is too late. I was told they didn’t see any cancer anywhere else so they would refer me to the melanoma clinic. Th e beginning of Dec  I saw them and they would start me on immunotherapy for a year because it may come back. but I would need to have a PET scan before treatment started. I had that in Dec and when I had my appointment later that month and it had spread to 5 places. Like you, how did that happen? From nothing after the op to 5 places? I was told it would be treatment for at least 2 years. The Doc said cancer is sneaky, it hides then just comes out! 

I started treatment in Jan and my husband talked the doc into giving me another scan in March because you are suppose to wait 6 months. They said it was responding but didn’t give any details and I think I was too afraid to ask. So relieved it was not worse but he did say it was really too soon. I am going to have another one in Sept. So it is fingers crossed until then. 

I don’t know what stage my cancer is but looking it up it looks like stage 3 or 4. I did ask my oncologist but he said it is confusing to just say what stage it is because there are other factors. I think the number of lymph nodes affected also plays a part. 
On my letter the stage is T0 pN2b M1c B-RAF wild type. I think it means that 2 or 3 lymph nodes were affected, source not found and it has spread.

Do they think that radiotherapy will help? I thought they did that when they know where to target it. With immunotherapy it goes all over as they don’t know where to direct it. 

it is a worry when it spreads so quickly. Let me know what happens after your appointment on Wednesday.

Good Luck.

DaisyRed