Hi everyone
Waiting for dx on tuesday. Already told that they are certain it is cancer in the right breast and possibly in lymth nodes. Will be discussing treatment with the consultant but I think I have made my decision to have mx. What worries me now is that because the lump in my breast if quite large will the cancer of spread to other parts of my body. I have no other aches and pains apart probably those in my mind since I started this journey but I can’t help but worry. Will the consultant give me further tests or will that only happen if report any pain to him. Is there anyone out there going through something similar. Can’t help think that mind is in over drive but then I have little moments of panic. Am I just over reacting. Feel ok in my body apart from breast being sore from the biopsy. Can anyone help.
Hi Elliedog,
I am afraid I can’t answer you one way or the other, but we all remember the strain of the diagnostic period. I remember self diagnosing three brain tumours between diagnosis and seeing the surgeon to discuss treatment!
I hope you do take some reassurance from knowing that the lymph glands exist solely to capture foreign agents (infections and cancer cells for example) before they get into the blood stream. If cells were found, it means that the lymph nodes were doing their job.
To use my experience as an example, I had Mx and sentinel node biopsy. At my NHS Trust, they test the biopsy during the op, so if necessary they can undertake the node clearance at the same time. As all three nodes came back positive, one of them had micromets, the surgeons did a full node clearance. The path results came back with only the first three nodes out of 26 sampled having cells. I expected many more than that to be positive. I am sure that the reality is not as bad as we imagine whilst in the waiting room.
Keep yourself as busy as you can doing things you like, see friends, start a project, or curl up with your favourite film. It not only helps pass time, but stops the worry demon camping out.
Best of luck,
MM x
Hi elliedog
I can only advise that when I had my dx because I had 3 lymph nodes affected the oncologist referred me for a ct scan he said its going to change soon to 4 or more nodes before they scan but I think hospitals differ on this as with everything, I complained of rib pain during treatment and was given a bone scan as well so they are pretty thorough if you are worried or show any symptoms, Im under the royal marsden and if the results come back clear on lymphs or as I said less than 4 they dont do any further tests but your team/hospital may, if you have chemo they should do a heart scan first as I believe that is across the board for chemo patients but I could well be wrong on that but I know they do it for all at rm as matter of course, good luck for your results hun let ud know how you get on xx
Hi Elliedog please don’t worry about size of your lump as mine is 50mm grade 3 aggressive . My nodes were not affected and CT and bone scan clear. I too was worried about the size and if there was any spread but so far so good . After 2 chemo it is now only 20% of the original size. They will probably scan you but don’t worry it is routine at most hospitals .
Whatever your diagnosis you are being treated so in capable hands and is treatable . Wishing you luck with any treatment you have
Wendy
Hi everyone
Just sat down to read all your messages. Have to say a big thank you. Your right your mind does go into over drive and I have to start thinking I have options and lots of people beat this disease and there is no reason why I can’t be one of them.Big thank you again. Going to see the consultant on Tuesday hopefully the news is doable. xxx
Hi Elliedog, you really are at a horrible place right now, your mind doesn’t rest and just runs away with all the what if’s, please be reassured that once you have the pathology and treatment plan you’ll begin to feel more in control of things. As for scans, I had a small lump with a micromet on one lymph node, I wasn’t offered any kind of scan as wasn’t deemed necessary, I think it’s only routine to have a heart scan if you need herceptin as this can and does and affect the heart function x
Hi Elliedog ,
I was diagnosed with a rare type of cancer after having what eveyone thought was a benign fibrodenoma removed ,when the hsytology came back and the cancer was found (my appointment was thursday) the immediatley started to move other surgery to later dates to get me in on the wednesday for emergency mx they also started to arrange for an emergency ct scan to see had it spread any where else ,i had this done the same day in the afternoon results were in next day called to the hospital friday 11am less than 24 hours after being diagnosed to be told one suspected lymph node and that i would need a bone scan ,this was done tuesday told everything looked ok straight away radical mx was performed wed lunchtime .hystology came back lymph node all clear and 5cm clear margins . so depending what they find they will and can move all goal posts to give you what you need ,By the way I in the Isle Of Man and cannot have chemo or radiotherapy they are not proven to work on the cancer I had .I Think each case is considered as to what is required at the time to assist the best course of treatment for the patient ,I havnt been appointed an onc although I know my case was dicussed with one .
I wish you all the luck in the world try not to worry (Easier said than done ) and you will be supprised as to how strong you will be when once treatment ,surgery etc begins.
take care lizzy
Thank you Lizzy
Can’t believe how comforting everyone has been. I know anything is possible and everyone keeps saying that with thier help the treatment will be doable. I keep hearing from people not to worry about the size, not to worry about the different tests everything will be done to get me through this and at the moment I truely believe them.But part of me is so scared and part of me mourns the fact that nothing will ever be the same. But one thing I have learnt very quickly over past few days is to appreciate the family and friends around me and that life is not a rehersal. Thank you for your kind reassurance.xxx
Hi everyone. Going for diagnoises today. At best hoping the cancer hasn’t spread at worst it has or something else I don’t know how i will cope with. Appointment at 9.45am, fab husband coming with me.Feeling terrified,shaking but trying to keep it together. Although they have already indicated it is cancer do you think the lump could be beign,I am living with hope.Will try to post later.xxx
Elliedog wishing you luck for this morning will be thinking of you. Hope you get some answers and once a plan is in place things will get a little easier. Take one step at a time and try not to worry and think too far ahead just concentrate on what is happening now and you will get through it may feel like a long road but you will here’s here.
sending you massive hugs keep us posted
Wendy x x
Just returned with results. Invasive ductal aderscarcinoma, grade 2,and i think her cep 2(not sure what that means yet).Although expecting the news still feels like a bombshell.Had a long chat with the nurse who was fantastic. I have decided on a mx and they will clear my lymph nodes.Go in for surgery 21st March and then take it a day at a time.I know that i can get through this and losts of people do but i still keep thinking why me.But i plan on watching my boys grow up and to grow old with my wonderful husband.My aim is to be fit and healthy for the race next year, something to aim for. Thank you for everyones support it does help to gey you through.xxx
Hi Wendy56. Thank you for your support it really does help. Are you still having treatment as it would be good to talk to someone who has come through this horrid disease.xxx
Hi Elliedog,
Even if you are expecting the diagnosis, it is still a shock having it confirmed. Sadly BC is indescriminate, and can affect anyone, athlete and sloth alike. Your fighting spirit will help you enormously over the months ahead; your determination to join the Race for Life next year is brilliant, you are right to say something to aim for. (You may have pushed me into the same goal!)
I find out what my post surgical treatment will be later this week, so am at a similar stage in the process. (Mx and ANC 5 weeks ago), so feel free to contact me if you have particular questions. We are aiming for the same things, to grow old with our families. A fine ambition to have!
Best wishes and cyber hugs,
MM
Elliedog not the news you wanted to hear but at least now you can move on and try and get your head round things. I have just finished my chemo last one of 4 yesterday was diagnosed on 7th Dcember with a 48mm tumour grade 3 so chemo first 2 shrink I am booked in for 25 April for mastectomy .really wanted immediate recon but have to have rads so looks like that might be put on hold . Also going to have mastectomy other side at some point not sure if that will be 25th April also.
Would be happy to answer any questions however small you might think they are pleas pm me anytime
Wendy x x
Hi Mungo_mum
Thankyou for your posting.You sound in a very similar position to myself.Although I wouldn’t of wanted anyone to be going through this but it helps to listen to someone else.If you need to talk I always have a listening ear. How do feel after your operation? Does the emotional wheel stop turning as much?Trying to be positive but it just seems to be in my head every waking hour. I hope this can get easier.Thanks for listening and I am here if you want to sound off.
xxx
Thanks Wendy56 for your kind thought. Can’t tell you how much it means to have people out there to help.I probably have so much to ask people but have been given so much info today not sure if my head can take anymore. I am trying to keep things as normal as possible for the childrens benefit with the help of my husband. I know I can conquer this because there are people out there like you doing just that and because my wonderful husband said Iwill and I believe everything he says. If you need to talk please don’t hesitate.
xxx
Hi Elliedog
Really sorry to hear your news. I am in a similar position to you in as much as I will also be having a MX on march 21st too! I have already had my lymph nodes taken. If you need to ask any questions or anything up to the run of your op please don’t hesitate to get in touch and likewise afterwards. I’m still coming to terms with the fact that I need a MX so I can appreciate your fears but sending you massive (((((((((hugs)))))))))) xxxxxx
Ls
Hi Littlescoot. I am sorry to hear you are in the same situation as me.I suppose we are both going to have a big day on the 21st. I know an mx is the right way to go but makes me absolutely terrified. I plan to kick this disease and I hope you do to. I have many more years of watching my children grow and growing old with my wonderful husband.I know I will have many more questions to ask so I hope you don’t mind me asking when they come into my head.Thanks again for posting I hope we can keep each other updated. Lots of hugsx
elliedog
Hi Elliedog,
My BS recommended a MX, which I actually preferred; I actually wanted a bilateral Mx but was discouraged because the medical team had not thoroughly discussed this option with me, and we didn’t have time to before the op. After the op, I felt relieved that the cancer had been removed. The Surgery is the main treatment; all adjuvant treatment is to minimise the probability of a recurrence or metastases. The only problem is that whatever anxiety I had, once satisfied, is just replaced by another after a few days. I did throw my toys out of the pram last week because I still did not have my onc appointment. It worked, and I have one now, but I am now focussing on something else! Too much time on my hands… I have not kept my own advice of keeping busy!
This all sounds as if I am not handling this. I have 2 teenagers, and am determined to see them grow up into adulthood, so I have met this head on, and have discussed everything with my OH, who has been v supportive. I just like to have facts (not that I am a control freak…) and by that I mean that I want to know exactly what further treatment I will have. It seems to be fairly cut and dried in most cases, but for some reason I am in the “might” camp and understand the only definite will be Tamoxifen, “probably” won’t get rads or chemo, but the size of lump and my age (at 43 I am apparently still young!) might sway the onc into recommending chemo. Because of this, I have not coloured my hair since I was dx in case I need chemo and need to chop off my 12” long hair and I don’t want two tone short hair! I don’t yet have the confidence to go back to my favourite hobbies, (ceroc and wallclimbing) because of the change in clothing I will have to wear (tended to wear vest tops before, not an option at the moment!) although I am probably physically recovered enough now. We have also delayed booking our summer holiday because we don’t know what is planned.
I don’t mean this to be a self-pitying post, but just to explain how a BC diagnosis has affected so many more areas of my life than I first anticipated. The anxiety has diminished, and I focus on the little things, probably so I don’t think about BC specifically. Once I know what is happening, I can take control of my hair again and plan ahead for the summer. As I discovered when I discussed the recommendation with my BCN that I don’t use a hot tub again to minimise the risk of Lymphodema following the ANC, there are ways round medical outcomes (I of course need my affected arm to hold the champagne flute, so need to keep it out of the too warm potentially septic water!!!). I read a wonderful phrase on a blog I found just after I was diagnosed, “you just have to find your new normal”. Life may not be the same again, but there is no reason why it can’t be just as fulfilling.
Take as much control of your treatment as you can, ask questions to understand and don’t forget to socialise. It does get easier; there will be blips on the way, but nothing we can’t handle after being diagnosed in the first place.
Best wishes,
MM xx
Thanks Mungos_mum for your fab post. I to am 43 with two children 9 and 14. I think that is the most difficult part is telling the children. As was only diagnoised on Tuesday so we haven’t decided how much to tell them.Although I don’t feel emotionally great today I feel less shakey then yesterday and as the op grows nearer I hope a little more control will come back(as I to am a control freak).I am beginning to come to terms with the fact life will be different but as you have already pointed out it doesn’t have to be less full filling. I am so grateful to my friends and family for their unbelievable support especially my husband of whom is just a saint.I know I am not the only woman to go through this and I know that most go on to live to an old age but part of me still hates that at my age ( do not drink much,fit and healthy) has to have this over me and my family for the rest of my life.But on a positive note I know my diagnoises is beatable and with everyones advice I know what questions to start asking to be able to take some control of my treatment. I to colour my hair and have decideded not to colour it for a while as I know I will be having chemo so what hair I have(I already wear it very short) will probably full out. But thats ok because hopefully it will come back curly i have always wanted curly hair.We to are holding back on booking a holiday for the summer which is a bit frustrating but we are away in this country in May which my wonderful BCN said should be ok.I suppose what I am trying to say is although all this has happened very quickly I am starting to look a little further down the line and with everyones kind thoughts and advice I am having more positive moments than crying moments. I hope I can be as helpful to others on my journey as they have been to me.I hope you soon get the information you need about your further treatment Mungos_mum so you can take control of your hair. Please continue to post as will I.
Lots of hugs xxx