Positive Groin Node

Hi,

Unfortunately the care you are receiving is pretty typical for Stage 3 patients at most hospitals. I have been Stage 3 (positive nodes in groin & pelvis) since 2009. The only scans I've ever had were my pre-op scan, a follow up scan 8 weeks later as the pre-op scan showed a mark on my liver which the later scan ruled out as being benign, and finally a scan 6 months post op as I was having neck & head pains so my consultant wanted it checking for mm involvement - thankfully it was clear.

The reasoning behind not having regular CT scans is that each scan exposes the body to radiation equivalent to 650 x-rays - the damage caused by cumulative scans then far outweighs the reassurance the scans give. The only time they give 'regular scans' (perhaps every 6 months or yearly) is for mm patients who have aggressive mm (a high mitotic rate) & are at a far higher risk of it spreading. 

I know it's so hard when you want the reassurance a scan can give but your consultant would order a scan should you complain of any worrying symptoms. As for how & where it could return - there are several options. It could return again in the lymph nodes in a different area of the body (and that is why they ask you to regularly check your lymph nodes for swellings as they do at your check ups). It could return in an organ (lungs, brain, liver) or the bone and in rarer cases it can return as blue lumps under or on the skin. It may not return/spread but patients can sometimes be diagnosed with a new primary melanoma which is not linked to the original primary - so in effect it's possible to have 2 melanomas of different stages. 

Lastly - it may never return/spread. It's hard to live with the 'limbo' a Stage 3 diagnosis puts us in but take heart in knowing that drug research is moving on apace & we are hoping that, at some time in the not too distant future, Stage 3 patients will be included in the drug treatments now given to Stage 4 patients. There are several Stage 3 patients, including myself, that I know are still mm free coming up to 10 years post diagnosis so the odds aren't as bad as you think Silken.

Best wishes

Hi silken I do sympathise with you. My MM last year hadn't spread to lymph but endometrial cancer this year has (different primary). I'm also high risk for recurrence for endo and it's a truly dark cloud that hangs over your life thats for sure. Angies right in that ct scans use a lot of radium, so I'm having Mri scans every 4 months which dosent use any and gives just as good a picture. It's whole body and takes ages, I hate them but at least I know I'm being monitored! It might be worth asking about them they are expensive and nhs are notoriously short of money, different hospitals have different budgets good luck!

P

Dear Silken, 

melanoma is a tricky disease, I had no known primary, but was admitted to hospital when I had a lump come up in my groin which I thought might be a hernia. I had been ill for about three months before that which I put down to my mother passing away, all the stress of the 140 miles x 2 that I had been driving back and forth to see her. I had felt really ill, being sick loosing weight, I do not want to feel like that again, and feel that the stress very probably contributed to my cancer, being diagnosed with metestatic melanoma to my abdominal and pelvic lymph glands.

I want to concentrate on the positive for you for a moment. You haven't said that you feel unwell, you haven't said that you feel any glands are raised. Your melamona might not come back, and or your body might be picking up any it spots and destroying it. So what you might have to do is just deal with the anxiety of the feeling that it might come back with a mindfulness course, and getting on and enjoying yourself.

I know that is hard to do, and there will be days when you feel overwhelmed by what you feel might happen. I am a very luck stage 4 person told in August 2015 that statistically I had less than a year, and rushed to do my will etc, I've had one further spread to my left ovary when I was on dabrafenib which was then stopped, but after 6 months on pembrolizumab I am virtually clear but still undergoing 3 weekly treatments. I have to stay positive and they are suggesting a small break in my treatment in 6 months time if as the suspect I will get to being clear.

Let's make a pact of being positive together, as all the worry does is make you feel worse and can make the very thing that you fear come back. 

You should be able with new eyes, to see your kids grow up and should be able to prioritise the most important things in life because of your experience. Other mums will probably take for granted every day, but you can savour them. You will need to be vigilant of your lymph nodes and your skin, and alert your team when you feel a scan is required and push for one if they don't offer one, but that might be years away, it might be never. Every time you check and there is nothing different embrace it.

I am hoping I am not sounding too much much like one of my non cancer friends who once said to me (I think perhaps to cheer me u) that there was no difference between her and me really as she could get hit by a car tomorrow, we all die sometime !!! I don't think she could appreciate the stress we all feel and have to conquer or come to terms with ! 

My very best wishes for how you will proceed.

Hi Silken,

I am soo sorry for your diagnosis.  I had my results back in November and they came back inconclusive(small cluster of cells but they cant tell if they are melanoma or not I could be a weird person with a mole inside my body)  so my consultant is giving me 6 monthly CTs and 4 monthly  ultra sounds and skin checks. I have just had my first CT yesterday.  I think the treatment very much depends on where you are in the country and what your consultant thinks best.  Honestly I have learnt to just trust my doctors and go with the flow.  If you feel very strongly make an apt to speak to your consultant and your skin team and ask them for a scan.

Huge hugs it is tough.  How long ago did you have the results and the op?

xx

Hello

Your email got me through December and I am very grateful.

I wonder if I could ask. A year on and I am still having what I can only describe as a toothache in my groin where the node dissection took place. I cannot feel a lump (I did have a Seroma which has shrunk) and my three month examination was ok with no palpable lumps.

Have you experienced this at all?

I also find that Inhave days when I feel so weepy and seem to be sensitive to TV and radio ads which appear to constantly talk about cancer.....

Thank you

I do hope you are keeping ok...

Hi Silken,

It sounds like you are still experiencing nerve pain - the surgery causes numbness (sometimes permanent) and/or nerve pain that can niggle all the time or flare up now & then. I still get it in my groin & upper leg 7 years down the line - although it's not as often these days it can sometimes be quite painful for a day or so. If it's still causing you concern then bring it up at your next appointment but there is not much you can do about it other than hope it dies down with time.

As for your emotional phases - yes it's quite normal although again, it becomes less with time. If you think it's becoming debilitating & affecting your everyday life it won't harm to contact your local Macmillan or Maggies centre & enquire about counselling. If you don't have a centre near you have a word with your SCN at your next appointment & they should put you in touch with someone for advice about counselling. I know of several people who have been knocked for six after their mm diagnosis & surgery & their lives were severely impacted by it - counselling on how to deal with living with a cancer diagnosis has helped them enormously.

I hope you start to improve physically & mentally over the coming months,

Best wishes 

Hello

I wonder if you could help? I am going through a difficult period. What has caused it I do not know but am becoming very scared.

I have probably read too much and almost believe that I am deteriorating.

I had a wide excision of mole in lower limb in 2015, had one positive groin sentinel node micro-metastesis, no mitotic activity with no further node affected though had them removed. I have read recent documents on line and have come away thinking that I may only be here for a few years. I am so confused regarding my prognosis. I was not offered any treatment after my groin node removal and also wonder whether I should have been offered some treatment?

Hello , gosh this conversation was a blast from the past reading through this again. I am sorry that you are going through a difficult period, we all get difficult periods, sometimes it’s an anniversary or an appointment looming, which makes us retrace everything that has happened to us a sort of post traumatic stress disorder from a cancer scare. Ive been through a few wobbles since that last conversation. 

When you posted in this old discussion of yours it notified everyone who originally spoke to you, back in December 2016, and it may be that your Hello was directed at all of us or one of us in particular. I went to bed really early last night so I’ve only just read this, AngieT hasn’t used the site for 2 years (my belief is she is on a different forum), Katsil has changed her user name to papermoon so I’m tagging her in to join in with who both still use the site. 

You’ve said you have a feeling of only going to be here for a few years, feeling confused about your prognosis, and wondering if you should have been offered some treatment. I thing I’m going to add my twopenny worth in reverse order.

Back when you had your WLE and SLNB there was no other treatment other than watch and wait, in fact depending on the size of the primary melanoma and the SLNB there still isn’t. I find that in the real world the people that I come across who have had cancer have had radiotherapy or chemo tablets as a maintenance treatment to help prevent the cancer from returning, but both of these options have been found to be not affective for melanoma, there were some clinical trials for an alternative for adjuvant melanoma treatment. 

Since September 2018 an adjuvant treatment was approved by the NHS when they felt that there was an increased likelihood of a recurrence, due to the size of the primary and so when the sentinel lymph node was removed and when these people are cancer free, they can have treatment to attack any microscopic cancer cells that can’t be seen by a scan to stop them from multiplying to form a tumour. This is not offered in retrospect it is only offered to people within 12 weeks of having a SLNB, so no you have correctly it seems not been offered anymore treatment. The doctors also know that they are treating some people with chemicals that have side effects when some of the people might never have a recurrence. The patient therefore has to decide wether to have the treatment or not based on the doctors recommendations (NHS rules) and their own feelings on quality of life, their own circumstances etc. 

Prognosis, did they give you one? I know you mentioned in your old post not feeling well, but you haven’t mentioned anything this time except your emotions so I hope you are feeling well. In the group life after cancer there are often discussion from people approaching the end of a 5 year follow up and feeling well a bit lost. 

I am still here and clear no measurable disease and looking forward to coming off treatment in March and remaining cancer free. There will always be a bit of me I think that will fear a recurrence in a lymph node, but I think as time goes on I will feel that less frequently than more frequently, or at least I hope so. In 2015 I was told statistically because I couldn’t have surgery and because it was in so many nodes I had less than a year, I became clear. I had a recurrence in a few nodes which shrank on treatment and then surgery on a rogue one, and I’m now clear, and they are talking long term remission or cure going forward, no guarantees but a real hope. 

can you think of anything that has triggered your wobble? Was there a reason for reading up on things and what was it that unnerved you? Is there anything that is stopping you from believing in the best scenario? 

I’m hoping talking about it will help if not here on the Macmillan support line or to your own skin cancer specialist nurse. 

Thank you for your reply - much appreciated.

I have not felt as well in myself for a while now and think this has maybe started my anxiety. In between all this my father also passed with colon, liver and lung cancer.

I am still in follow ups at the hospital and although I have told them how I feel when I go, they really do not seem too concerned so I tend not to keep repeating myself. I have no idea regarding prognosis - this was something I was told that they don’t discuss. What I resorted to therefore is reading what I can from the internet which I recognise may not be the best. I have also asked about scans but have been told very clearly that they do not do these unless symptomatic ( though note that some trusts will offer periodic scans)

It is also confusing when you read the significant variances of prognosis for stage 3a which is why I feel the way I do. Maybe I should  not have asked for a prognosis but I know that for me, I would personally prefer to know and may manage this better if I did.

Thank you for sharing your own experiences - I know you said you had also had some wobbles which you appear to have overcome. To me, you come over as a strong positive individual and your kind words and information are appreciated - thank you. X

Hi , I’m sorry to hear about your Dad, I don’t know if I’ve said my mother passed away 3 months before my diagnosis, I thought that my feeling unwell was anxiety after her passing, so I’m glad your still having follow up and that your telling your team how you feel. I hope your team not seem concerned because you perhaps still look well and they haven’t identified any swollen nodes. It must be very hard being on watch and wait. In one way I was thinking it probably gets easier the longer that you stay clear rather than a feeling of inevitability and that as time goes on the anxiety gets worse which is the impression I’m getting of how you feel. 

I think I’d be encouraged that where as years ago if a spread occurred there was no successful treatment at least now there is, the downside is we just have to hope that we are in the percentage of people that the treatment works for, and that every year the treatments improve. I think sometimes the mind has to reach rock bottom and reject that scenario to begin hoping to be more positive. I’m very lucky that for every blip so far there has been a positive side. It hard for me to stay feeling down with the positive news I’m still clear, but I’ll probably have a bit of doubt heading towards the next scan, I think that’s very natural. I know you don’t have scans so I’m assuming the wobble for you will come at the check ups. I’ve sometimes thought about going on a Hope course that Macmillan do. I met a really nice lady at a Macmillan cancer voices conference last week who went on one and then did the training to be one of the facilitators. 

Do you have a Macmillan’s information point at the hospital you go to or perhaps a Maggies centre ? I suppose I at some point had to decide if how I felt was either just anxiety or wether it was an illness, for me unfortunately it was melanoma. For yourself you can talk to your team outside of your appointments, either about how you are feeling physically or emotionally or both. 

I hope you find your way through this stage, and feel that you can off load here when you need to.