another decision to make

Had my results today from my mx and lymph nodes unfortunately lymph involvement with a hormone receptive and another type (which i cant remember ) of cancer . Need 2x of meds and chemo i have been given a choice to have the other lymphs cleared too but its up to me . Then i was invited to join a trial where i am chosen at randem to have the treatments alone or surgery and treatments OMG i just want to be told what im having lol as my head is going to explode , i am sure this happens a lot just wondering if anyone else had the choices .

Hi Tracey,

 

Sympathizing with you on that one -  I have no choices.

 

It seems you might be able to ‘blaze the trail’ for others who have the same/similar diagnosis as you.

I have no idea how often this is offered and don’t think it is common place.

 

However, if I was given such choices, I would sit down with the team resonsible for my treatment and ask them with regards of the varying percentages of increased post 5/10 year survival rate, for each step/alternative of suggested options. At least that could give a basis on which one can make a decision. It may be difficult for you to do this, depending on your diagnosis and how you feel, so  would suggest to discuss that with your BC.

 

The choice of which treatment will always be our own, which can be challenging, as we are not medical and lack specific knowledge.

 

Hope my thoughts are of a little help.

 

Good luck - let us know what happens.

 

xxx

Tracey, so sorry to hear this. It must be a very difficult decision to make. I had the SNB and one of the two taken showed cancer cells. When I had my mx they took all my lymph nodes and I have just had the result today that none of ther others were infected. It’s a huge relief and whilst I have the on going risk of lymphodema and currently suffering from cording knowing the rest are clear has helped me so much.

I don’t know how you make the decision to go for the trial but I hope others come on here and help you make the right decision. Try and keep strong xx

Hi there.
It seems that lots if ladies are being given a choice. I would find it hard to make the decision as doctors will know what is best for you. I haven’t been given a choice as all my lymph nodes are going to be removed.
Good luck xx

Hi Tracey xx

Sorry to hear the news , its difficult because its one of those things where you would probably just rather be told what to do. Id ask the doctors or BCN %age changes with or without.

As you know we had our MX on the same day and I had a full ANC at the same time (didnt get given a choice) all my nodes came back clear (had chemo beforehand and there was something in them before that so the chemo got it) yet despite the risks of cording, lymphoedema etc like Bella boo im glad they are gone.

xx we are here with virtual hugs/cuppas/vodkas?/ whatever you need , whatever you decide to do

Jen x

Tracey I think the trial may be the one that was discussed with me pre my post op results so I looked into it in case I was asked if I wanted to take part when I got my results .It is a pretty large scale trial and a lot of hospitals are taking part.Recent research has suggested that full node clearance may not be of anymore benefit to survival rates and that radiotherapy to the arm pit plus the other treatments may well be just as good .I think you allocated at random one treatment approach or another,I think they mentioned some sort of medication too?I will try and find the link for you.I think the hope is that women will not have to have further surgery when lymph nodes are involved and avoid the possible complications .If it’s any help I decided I wouldn’t take part if asked as I would have wanted the reassurance of having any traces of cancer removed ,but everyone is different .Ask to talk to it through carefully before you make a decision .

Cancer research uk has really good information about all the clinics trials that are currently on offer.If you search under clinical trials then breast cancer it brings up a list of trials.If it’s the same one tbat was discussed with me search under treatment for breast cancer in armpit.

Thanks all for your feedback the research nurse gave me some info and a u-tube link , the research is trying to accertain whether lymph node removal is a necessity in treatment their  results to date are a little sketchy and although the stats say only a 4% chance of further surgery if not having the nodes out if i were one of the 4% i would be rather upset lol . Got while next thursday to decide but i have to say the only thing that worries me about the op is the chance of lymphodema , Bella great news i  am really pleased for you , we will all get there in the end xxx

Hi Tracey

 

Sorry you find yourself in this situation. I was diagnosed in March 2014. 3 tumours so had mastectomy and sentinel node biopsy early April. Turned out to be 2 tumours one was 12mm other 7mm, er positive. I had 5 nodes removed, 2 were cancerous, 1 had small cancerous changes and the other 2 were clear. I had chemo, my radiologist told me that studies had shown that women my age (45) at the time, did just as well having chemo and radio as women who had total clearance. I had 5 weeks of radio. The surgeon, oncologist and radiotherapist at my hospital all discuss treatments together before any treatment options are given. I did not ask to see the studies and didn’t have the clearance. I am also on Tamoxifen. 

I don’t feel I had any major decisions to make and went along with what the team considered the best treatment for me so I really feel for you being in your position

I hope this information may in some small way help you. 

 

Vicbee xxx

I realise this may be a silly question but its in my head , if i opt for the just chemo and meds and leave my lymph nodes alone after my treatment ends how will i know if the lymphs are affected then and  in the future … what tests are there to determine this ? does anyone know or even understand what im whittering on about xx  thanks im going slightly mad now lol

Hi Tracey,

 

Think you were probably offered to go on the POSNOC trial which is ongoing at the moment. I was offered that too as had one node affected. When I got my results my surgeon said I could go on the trial but also suggested that if I really didn’t want to have node clearance then I could consider just having chemo as studies in the USA have shown it is as effective as having node clearance in long-term survival rates. At the time I was hugely keen to avoid more surgery, even though I had recovered from my MX and implant reconstruction really well, and opted to go straight on to chemo. When I met with my oncologist she had very different ideas and felt I was making a mistake. She strongly recommended I have the full clearance. I have had great treatment but found the differing opinions of my surgeon/consultant and oncology team the most difficult part of the whole process. In the end, I decided to have chemo first and give the clearance some thought. I was told by the medics and the Breast Cancer Care helpline that it would make no difference which way I had the treatment as the chemo treats the whole body. 

 

After speaking to several people, including my BCN, it came to light that my surgeon/consultant is very much influenced by the US research. Both he and my BCN believe that within the next five years far more people with fewer than three nodes affected will go down the no clearance route if they are having chemo. My oncology team were more traditional in their approach.

 

In the end I decided, reluctantly, to go with full clearance. I’ve been lucky in that I’ve recovered from the surgery really well. I was uncomfortable for a few weeks but better than I anticipated and I have almost full range of movement back three months afterwards. It turned out that I didn’t have any more nodes affected so it wasn’t necessary but at least I know for sure that it’s all been removed. I do worry about lymphedema but as my BCN told me 70% of people do not suffer from this to any significant extent but they do have to warn you about the risks.

 

As others have said, it makes it harder when they give you the option of how to progress so I wish you lots of luck in making your decision and with ongoing treatment. I finished chemo four months ago and while I’m still not back to 100% am feeling a lot better than I imagined I would at this stage after treatment. You can do this.

 

Sorry for such a long post - hope it’s helpful.

 

Ruth xx 

Hi again Tracey,

 

Missed your last question while typing my previous message. I’m not sure there is any surefire way of finding out if your nodes are affected without actually removing them surgically. I have heard of people having their nodes scanned but I’m not sure it is a 100% way of detecting if there is any involvement there. I was never offered such a scan.

 

Ruth x

Hi traceyfizz

 

I was told that I could have my other lymph nodes removed but my Consultant advised me not to. I then had chemo and rads. I am approaching my second post-op check, I feel absolutely fine and there has been no sign of the cancer returning so far. Just thought this little bit of info may help you to decide.

Tracey your not wittering at all it gives you brain ache thinking about it! I had macrometastasis to the sentinal node and my surgeon  was clear  (also discussed  at mdt) that there was a move to rads to the axilla were single nodes involved which had the benefit of less long term complications. All good until I got to oncologist who wants to discuss what we do with the breast  and clearance following chemo! My heads battered  thinking about it which is why I am following the other thread  with interest. X

Thanks for all your very interesting replies it gives me more to ponder and Peggycat i feel too that it may just be down to the fact if i have the clearance i will know if others are affected i think its a case of if i have trust the chemo and meds will work if there are indeed others affected , i know there are no 100% guarantees we just have to go for whats offered and keep positive …hate this part just better once treatment continues again xx thnks aain everyone youre a godsend good luck

Your experience sounds remarkably like mine Helly. Frustrating and not what you need when you are living through this. I think we are in the unfortunate position of going through this when there is quite a big change in thinking of how to treat us but not everyone in the profession is on board with it yet. From my own experience and from what I’ve read here it does seem to be the surgeons who are more progressive but the oncologists less so. I guess this is something that happens in all spheres of medicine and has to otherwise treatments would never progress.

 

I wish you and Tracey luck in your decisions on this.

 

Ruth xx

Hi Tracey, just replied to you on my POSNOC post then saw your original thread. I felt like my head was going to explode when they mentioned the trial as I just assumed that I would have all the nodes taken out if there was cancer in the sentinel node. I took a few days to decide and I went for the trial option because I think that trials are important for future generations and because I really didn’t know what to do for the best. I’ve seen how badly lymphodema can affect people as my aunty had it and she had to give up work so that was why I wasn’t keen to have the clearance but I also wasn’t keen on not having the surgery and not knowing if cancer was in other nodes. So that’s why I let the computer decide as I really couldn’t make up my mind after 3 days of debating it. 

 

I didnt want to ask friends and family for advice as to what they would do as I didn’t think it fair on them plus I knew it had to be decision.

 

loads of luck to you whatever you decide

 

hugs

x

Hi all , Been to see consultant and am booked in for clearance next wednesday and i am happy with my decision as i didnt get the assurance i needed . My consultant said that if she had a sister in the same position she would tell her to opt for the surgery so im really happy now lol . Drained again another 460mls where does it all come from ? x onwards and upwards to us all

Home from clearance today overnight stay and home with a drain , very sore but ok just time to recover now before chemo starts another stage over onwards and upwards xx