Hello

Hi OldSalt and a warm welcome to our group.

I’m so glad you’ve managed to find us and make your first post here-it can be confusing to get to grips with things when you first join, but you’ve now successfully joined our group and the group for incurable cancer. 

I’m so sorry to read your story-it must have been very difficult to get this news after such positive results after your treatment finished. My own story is a bit different in that I was able to have radical surgery when my cancer recurred after successfully going through chemoradiation, but in my situation this was only possible as I didn’t have any lymphnode involvement, which would have ruled surgery out.

Having a diagnosis of incurable cancer is understandably a huge blow for you, but the positive I would try to take from that is that your consultant has indicated that there would be treatment available for you should you choose that route after your next scan. I’ve not had immunotherapy myself, nor chemo for advanced cancer as I only had chemo in my first line of treatment, so don’t have direct experience to share.

However, there are other ladies in the group living with incurable cervical cancer so I’m hoping they might able to share some of their experiences with you. 

It would be completely your own decision if you wish to ask for a prognosis…I asked my surgeon never to give me a prognosis as I felt that would be detrimental to my own mental health but it’s a very personal decision. Many of the members in the incurable group are living long past their expected prognosis, which can only ever be a best guess based on general statistics. Treatments are advancing all the time, and immunotherapy now appears to have good results in many cases while being kinder on the body than some types of chemotherapy. While you have been told treatment would not be done with curative intent, it could be possible that it might work well and extend your life. It may make you feel better when on treatment, but that is something that’s difficult to anticipate as everyone reacts differently. 

I can understand how difficult it is that something tiny in a lymphnode can have this effect-when my cancer recurred, it was only measured at 11mm, which seemed to me to be tiny, yet I had to undergo massive surgery and lose all of the organs in my pelvis, resulting in two stomas. I did find that completely shocking at the time, that something so drastic was required. 

Your consultant should be able to go through the details of the specific chemo(s) proposed, and the type of immunotherapy being suggested. As you will know from your previous treatments, all the potential side effects will be explained, and you will have the choice to go ahead or decline treatment once everything is explained. 

I will have a look through the group for other ladies with advanced cancer who are undergoing treatment and see if they can offer any help or support for you. Do have support at home, with family or friends around you? I do hope so, but the community is here for you too-both in this cancer specific group and the incurables group which is very active with lots of members. You are very much welcome to post as much or as little as you’d like in both groups, and I hope that now you’ve found us, you’ll find it helpful to be here. You are very welcome now you’ve joined us.

Sarah xx

Hello Sarah

I have only just come across your message and just want to thank you for taking the trouble to write kindly so much information. I have read it and have felt it really helpful...so much to digest at the moment for me as I am only just coming back from many years of struggling to concentrate to read due to psychological trauma which I continue to deal with in psychotherapy - so I will re-read it again tomorrow and get back to you with my response - you are the first person on the forum so far I think who has experience of lymph node cancer and surgery - how horrific it sounds what you went through. As someone else has suggested I get a second opinion over the decision not to do surgery which at present I have no idea how or if to go about, I want to re-read you message tomorrow with a more considered response.

Best wishes

OldSalt

Hi OldSalt 

Just to clarify-I didn’t have any lymphnode involvement, which is why I was able to have the surgery I had. My recurrence which was measured at 11mm was at the site of the original tumour in my cervix. My apologies if that wasn’t clear.

You are of course able to look for a second opinion if you wish to, and I’ve provided a link here with more information

Getting A Second Opinion

If you click on this link above, it will take you to a new page. I believe that your surgeon has said surgery would not be possible for you but appreciate you would want to explore all avenues, and you should have time to do this before your next scan. 

Sarah xx

Hi Sarah

Thank you again for your information. I have now also read through your cancer journey on the "Hello" page. What an incredible story and journey you have lived through. I see I have misunderstood about your lymph node not being the area of cancer. The extensive surgery and what you went through following it with your recovery sounds almost beyond belief to me - and that you could possible not only recover from that but could be actually feeling so much better four years on. It will again take me some time to fully take it all in especially as up to now I have known very little about either my own or anyone else's cancer and their journeys. Your story makes me realise that I could be in for anything and to really begin to appreciate the present moment with gratitude for every moment I am not feeling sick or in pain and make the most of it.

It has been incredibly helpful to read all that you have shared as well as your help in researching about getting a second opinion. At the moment a question that remains in my mind is the mystery, as far as I am concerned, about the subject of pelvic nodes. I could not find any information or stories about cancer or treatment or surgery there and I am not certain but I think I read somewhere else that when a lymph node is showing or swollen, it is likely an infection and will go back down and the likelihood of it being cancer is 1%! If that is the case it is not surprising that I cannot find anyone who has a story about cancer there - but also it is barely believable that I could be one of only 1% of all people with it...right now if that is the case it feels like incredibly bad luck and I can't help having a "why me?" feeling! 

Following reading your story about your "tiny" tumour, again having been told my lymph node is only showing by 2mm and that that is barely perceptible, - and that though it was "not great", it was "not terrible" which my nurse said a month ago - up to now I haven't been able to imagine anything major happening but am now beginning to prepare for unknown possibilities of what could unfold - with still little imagination of what could lie ahead. My psychotherapist could not understand why/how surgery to a lymph node in the groin could be affecting the bowel as the bowel is in another place - all I could answer is that |I was originally told that surgery would mean having to cut into scar tissue which would be like taking a hammer to something instead of a knife - and the final decision by the surgeon at the most recent MDT meeting that he would not even consider it.

Questions now such as will i lose my hair again after the year of re-growing it, let alone all the other questions about effects of chemo and immunotherapy I will now be pursuing and thank you for all the guidance you have given.

Suddenly life is shifting into a new place. thank you for your help and your encouraging and amazing story and congratulations on how you have recovered from such a shattering time.

OldSalt xx

 Hi OldSalt 

Thank for reading my story-I have found it helpful to share it with others, and even though my situation might be different to someone else’s, they might gain something from it. 

I understand that if someone presents with an enlarged lymphnode this can often be because of an underlying infection in the body, and a there is low percentage chance of it being cancer.

However, things are different if you already have a cancer diagnosis, and the percentage of patients who have a spread to the lymphode(s) would be higher than those who don’t have cancer.

Unfortunately, you may find reading in different groups here in the community that the percentage of patients with a cancer diagnosis who have lymphnode involvement is much higher than 1%- cancer can travel through the blood or lymphnodes to other parts of the body.

I think within the forum you will find a lot of members who have cancer which has gone to lymphnodes and we have a dedicated group to discuss this here-

Lymphnodes Secondary Cancer Forum

I’ve certainly seen ladies in our cervical cancer group have lymphnode involvement, so I will tag some of them so that they will get a notification about this post and hopefully come on and reply-

 Aquabambi M dolly  Snobird 

The location of the pelvic lymphnode is importantly in deciding what treatment might be most suitable for you, and our pelvic organs are all very close together, which can make any surgery difficult in that area, especially after radiotherapy which can cause organs to be stuck to each other (as I had myself).

A number of the ladies in the group had cervical cancer at stage stage 3c1 (pelvic lymphnode involvement) or 3c2 (para aortic lymphnode),and in all the cases I am aware of from the group the treatment has been chemotherapy and radiotherapy initially on diagnosis, with different chemo combinations and or/ immunotherapy if further treatment is required.

As I said before, it’s perfectly acceptable to seek a second opinion as described in the link I gave you previously, and consultants and surgeons are well used to this so should have no objections. It should have no effect on how you are treated if you then remain with the same team-I think it’s understood that a patient needs to explore all options for their own peace of mind. 

I hope this has helped a little to clarify some things for you. You are dealing with a lot at the moment, in addition to the ongoing struggles with issues from the past which you’ve mentioned. None of this is easy, and if at any time you feel it would be helpful to get some extra support, the Macmillan support line is there every day-the phone number is in my signature below.

You can speak to a member of the nursing team, or just get general emotional support where there is someone to listen-they are lovely. 

Sarah xx

Hi SarahH21  How are you? X

Thanks for the tag.

 OldSalt  I’m so sorry you find yourself in this position after going through treatment last year, it certainly is a shock to get that news.

I was diagnosed 3C1 last year with small cell CC and I completed chemo, radio & brachy early May this year, but within 3 months it had returned and spread throughout my upper body.

I’ve just started the chemo cocktail & immunotherapy : Carboplatin, Paclitaxol, Avastin & Keytruda

Have they tested your original biopsy for PD-L1 markers to see if you’re eligible for Keytruda immunotherapy?

So far I’ve only had 1 treatment - long day - but mild side effects this past week which have now mostly resolved  : fatigue, aches in leg joints & muscles and loose bowels (that remains slightly) but all totally manageable.

I will lose my hair again - it’s only been regrowing for 6 months so that is a shame, but I just have to accept it and bought a nice wig to cheer myself up :-)

I’m in touch with a few stage 4 ladies, all who have recurrences in different places, and I’ve not heard of any having surgery to remove a pelvic lymph node. Most are on the chemo cocktail that I’m on.

The only exceptions re:radiotherapy I’ve come across are when recurrences have been small and confined to the lung for example, they’ve been able to do radiotherapy as it’s not an area which has had radiotherapy before (like the pelvis). 

Sarah has given great advice and is far more knowledgeable than I am in most of those areas.

However, if I can answer anything about the chemo cocktail / immunotherapy, please just ask away.

Sending hugs at such a difficult time.

J x

Hello OldSalt and i'm so sorry to hear of your diagnosis but glad you have found this group. I was diagnosed with Stage 3C1 with pelvic lymph node involvement but so far I am still clear after two years.  I have heard many many positive stories around immunotherapy and as someone said "where there is treatment, there is hope".   Aquabambi is right, Sarah's advice is so valuable as she has extensive knowledge and insight on this. Please let us know how you get on and we will support you in any way we can.  Sending hugs and strength xx   

Thanks so much Aquabambi for helping out here. I’m sure it will be useful for the poster to hear about chemo and immunotherapy in particular, and it’s good to hear you are coping. 

I’m doing ok thanks. Spending the day today relaxing as we had a very stressful day yesterday travelling and it's put my colostomy into panic mode-stress is not good for it and we had a flight delay yesterday with the weather. However, we are finally here and getting settled in and I can rest.

Sarah xx