Bit of advice please ladies

I'm having a lumpectomy next week. They say that is enough followed by radiotherapy for three weeks. Are these plans usually accurate. I've had a mammogram, ultrasound, and a core biopsy. They say this is because the lump is small, hopefully stage one and possibly not reached my lymphs. I find it hard to trust this is all I need. Advice please

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  • That is the same treatment a lady I met during my treatment had. You are so lucky to have it found this early. When they remove the lump, the radiotherapy effectively burns tissue surrounding the lump ensuring nothing can travel. Believe me it is a blessing that you dont need chemo. Good luck and try to relax and once its all done, enjoy life. Xxx

  • Hi lainey, that's what they say the plan is but they also say once the lump is looked at and the lymphs checked under the microscope it MIGHT change. They took five core biopsies of a centimetre and a half lump so I'm hoping when they say "this is very treatable" I can believe them. That's the thing, can I believe them?

  • You have to put your faith in them. They have your well being at the forefront. It is very frightenening but you have to try to relax. Try some of the mindfulness meditations and distracting yourself with hobbies and interests or even learning sonething new. Try to give the cancer as little headspace as possible or you could drive yourself mad. It is not easy distracting yourself but it is doable and you get better and better at it. Im here anytime you need a chat xxx

  • Thanks lainey much appreciated. I'm up and down like a yoyo. They seemed positive enough "very treatable" "stage one at the moment", "in this case a lumpectomy is the best way" but it's all a moving picture isn't it? I would hope they could not say these things then go back on them?

  • I honestly feel and understand your fear. Unfortunately this awful blight is frightening. You must be strong for you and try to keep as positive an outlook as you can. At the moment all is looking good. When do you go for the lumpectomy? xxx

  • Next Thursday, three days before christmas

  • You can believe them they won't lie they can't it's more than their jobs worth

  • Hi lainey, if it remains like that! I'm afraid of changing goalposts. Actually right now I'm afraid of everything! Wish I was a better person! You are an amazing, generous woman and I think I need to stop drifting into "what if' s" Apologies for my lack of self control.

  • I had lumpectomies (right breast 2cm left 1 1/2) in October 2013, went to oncology fully expecting to be told about my 18 weeks chemo to my surprise they offered for me to be part of a trial as lots of people have chemo without needing it. I signed up, one in three chance of missing chemo IT WORKED, 3 weeks radiotherapy, now on tamoxifen, clear mammograms in 2014/15/16, I say lumpectomies and radiotherapy works good luck xxx

  • Thanks Hennessey, much appreciated. Did your plan stick to its course or did it move about? What they said in the beginning, is that how it panned out?

  • In 1983 my then 32 year old aunt was diagnosed with early stage breast cancer, she had lumpectomy and 27 sessions of radiotherapy and that is it. She is now nearly 70 and never had any major health issues since then.

    I always think of this when i feel down.

  • Thanks catvlav that is indeed inspirational. These stories keep many of us going. I think the success stories remind us there are good outcomes out there. X

  • Wow.. Its truly an inspiration.It has helped me too.

  • I had the same this time last year. My monogram last month was all clear. I'm on tamoxifen for another 4 years. Few side effects from that but other than that all good. The lumpectomy, lymph nodes removed and radiotherapy was all very successful and everything is well. I was back to work after 6 months. It's all very scary and there will be anxious times but think positive. It's amazing the treatment they have. Good luck and take care x

  • I had a lumpectomy followed by radiotherapy, the only change to the original plan was extra doses of radiotherapy as one of the margins they require was not quite enough but they said it would not need further surgery. This was followed by 2.5 yrs tamoxifen then as it was not suiting me they changed it to exemestaine for another 2.5yrs. My cancer was stage 2 but the lymph nodes were clear. That was in 2005 & 11 years later I am still cancer free so trust your surgeon & oncologist. Above all stay positive xx

  • That's what I had exactly the same as you you like me are so lucky it was found early I had half my lymph nodes removed nothing in them all clear I am on tamoxifen for 5 years but it had been mentioned for another 5 you will be fine stay strong please keep in touch big hugs

    Janet x

  • Thank you Janet. I'm so please you have had good outcomes. I'm just afraid that the positives" he said were there, might not be, but I have to believe he would not be saying "very treatable" if it wasn't and I think he must have enough experience to have a good guess at what the plan would be. I checked with my breast nurse to make sure I had understood and she says he thinks this tumour is suited to a lumpectomy followed by radiotherapy and that it is, in his opinion, the best option for me

  • Hi I was offered the same as mine was small etc and ER + you won't know the full details until the surgery has taken place, for example I know people that had lumpectomy then more surgery needed as margins not enough etc. I personally opted for mastectomy with an implant as I didn't want to have radiotherapy as it does have side effects and increases chance of lymodema in the arm. The other thing is the lump size can change, when taken out mine was 40% bigger than ultrasound showed!

    They will test the sentinel node after surgery and the results will let you know if nodes clear or not, more surgery will be needed if they are affected, mine were not luckily.

    It does depend on a lot of things, and what you want personally, I am very happy with my decision, and that is the main thing.

  • Ask as well if they test the sentinel node rather than taking loads out, as this is a newer node check and less invasive, they put dye in 24 hours before surgery, it is the node that is first from the tumour I think they said.

  • I think, long term I would rather have a mastectomy. I think I could sleep easier, but the lumpectomy is scheduled for next Thursday and I'll have that first. It's all happened so quickly which is great but also over time your thoughts change

  • In answer to question...I went 25 years clear from your diagnosis but with Tamoxifen and more radiotherapy. Now its targeted better. IT has returned for a second time in old age yet it stayed away long enough for my children to grow up and for me to question, did I have cancer?

    The medics today is so much better. Meditation tapes are brillant to relieve stress and move on. Take care of your head the mind needs distraction...mentally this can be a whirlpool that you need not stress upon but do. Take care Xx

  • Think I will also add...close friends might turn on you and become distant but others more quiet step forward and take their place, ones you never realised would be there for you. Many things change.

  • I've already found that out. I've put on a "don't worry I'm fine" face and quite a few folk have been glad to scuttle away. I think they don't know what to say. My friend, a survivor, says this "separates the men from the boys" and already I think that's true. If, God willing, I get through this, I will see the world differently. I think I will see people differently. Not badly, just differently. After all looking back I'm not sure if I've always said or done the best thing for friends in similar circumstances. Best of intentions perhaps, but did I help? I also think that I've had an exaggerated view of how I could steer my life by effort and design. Ha! Now I understand how we can be brought to helplessness overnight. Huge learning lessons for me too.

  • I was really confused and puzzled by peoples reaction all those years ago. Survivers stepped forward to help over the full range of ages, phone calls arrived from friends of friends...its a great learning curve to life. You will be ok, if not forever for a very long time to come. Rest assured you will be well monitored.

  • Yes sounds right. However I would think they would check lymph nodes during lumpectomy and would then confirm treatment. Not sure they can know for sure before op.

  • That is what I had in Feb I finished radiotherapy in June.I had to have 2 ops because they didn't get a clear margin 1st time.Good luck but I'm sure you will be fine x

  • Hi glenshellach, I think the advice you have been given here is excellent and I wish I had had access to a similar forum 5 years ago when I was diagnosed with dcis. I had a mamogram, ultrasound and needle biopsy and then a lumpectomy. That should have been it but on the border of the tissue they removed, pathology found a tiny aggressive tumour. None of the previous tests could have uncovered this so I would say that they can only be 100% accurate once they look at your tissue under a microscope. They recommended I have a mastectomy and lymph node removal, which I did. No further cancer was found in the rest of my breast, nor in the lymph nodes. I am now on Anastrazole, but I hope I can stop taking that next year. It's easy to say but try to relax. Trust in your doctors, nurses, all medical people who are caring for you. Ask the Macmillan nurses if there are any support groups for women with breast cancer and ask to join them. I joined the "Moving Forward" group, which was so helpful and supportive. After my mastectomy I thought that would be it but my oncologist persuaded me to have 8 sessions of chemo. I will never know if the chemo was really necessary but I trusted them. Try to take someone with you to your appointments as you won't remember everything they say. Please post here how you get on. Xx

  • This is just like reading my story xx

  • this normally happens I think but it depends on the stage of the cancer and grade and it seems yours is at the very low stage. I think you should go with what they say and have the lump out and the radiotherapy. They just won't leave it after that they will still have tests and check if the cancer is gone. They normally test the lump too when they take it out. They send it to the lab to check if any cancer cells in the tissue around the lump. If you are still concerned ask someone to sit down with you and go through it again.

  • Hello glenshellach

    You've had lots of excellent answers & reassurance from other lovely ladies in this group.

    Please try & accept what your Doctors tell you, they have your best interest at heart & they are the experts. In the past the Surgery was carried out by General Surgeons but now they have a dedicated Breast Care Team where they specialise in Breast Cancer.

    Yes, things do sometimes change but for now concentrate on what they deem as the best way forward. Good Luck with your Surgery on Thursday 🍀

    Let us know how you get on

    Very Best Wishes for 2017 & l hope all goes well 💐

  • I was told that each person gets an individual course of treatment. I have since found that to be the case. I had bi-lateral lumpectomies followed by 4 x chemo, 15 x radiotherapy and 18 x Herception. This was confirmed once they had completed my operation, which I believe is the norm as they will double check everything.

    Have faith in them and in your inner strength.

    Wishing you well xx

  • I had my lumpectomy and sentinel node surgery done 4 weeks ago. I had to go back in for more surgery two weeks ago as the margins weren't clear. Luckily my nodes were. I'm waiting on my radiotherapy planning appointment coming thru soon to start 15 sessions in January. I've been on Letrazole for a year now as I was told this would shrink the tumour before surgery. It went from 30mm down to 12mm. Be prepared in case you have to go back in to have more removed. I wasn't and that upset me more than anything! I'll be on Letrazole for five years and then changed to another drug for five. Worth the side effects if it keeps cancer at bay! Good luck with your treatment. x

  • This is exactly what they do in they in the US. I had stage 0 DCIS high grade with no lymph node involvement. I had a lumpectomy with wide clear margins in October. I went for 3 separate radiation consults in 3 major NYC medical centers. All 3 radiation oncologists recommended radiation to prevent a recurrence.. There are minor differences In what each one offered but they were all very similar. The differences were related to how best to minimize radiation to my heart because my DCIS was on my left side. My surgeon and medical oncologist also recommended radiation therapy. Now that I have healed from the surgery, I will be starting radiation therapy very soon. Good luck to you!

  • Hi, I had a lumpectomy on 4th Oct and finished my course of radiotherapy 2 weeks ago, my mum had the same 10 years ago, and my cousin 2 years ago. I have had many emotions over the last few weeks, the team at the hospital have been wonderful, very supportive through all of this. You just have to put your trust in them. During my RT I met many lovely people - we all had the same thing in common 'Cancer' I actually felt quite blessed that mine was so treatable. The uncertainty of all this is still with me, the thought that it could come back fills me with dread, you just have to keep positive and hang in there. Sending hugs 🤗 Louise xx

  • Thank you Louisejr, I think that's the thing. Every bit of information is given with " but this could change. That leaves me wondering. They say "small, very treatable, slow growing" which all sounds great but then they say "but this could change" so really all I know for definite is I have cancer. I mean, can they say these things at this stage without being fairly confident of what they are saying? I think I'm generally confused. My husband says they talked of the positives. After ten days my mind is a whirl and I think were those just words? Are they based on what they can see and their experience or is it just a "tide you over to the next bombshell" Twice during the examination I was told this was benign. A student was called over to feel it as an example of nothing to be concerned about. Two mammograms later and an ultrasound I'm being prepared for the fact I Might have cancer. Then the core biopsy. Not the usual kind of lump no tendrils, smooth shape - turns out it was the most common type. So, you see when they tell me things now I'm second guessing what they say. Don't get me wrong I'm not blaming anyone, these things happen, and I'm mightily glad they picked it up BUT you can understand why I'm now questioning what I've been told and why my mind is starting to hit rock bottom and I'm trying to regain lost ground by finding out can I believe what they say. Can they say these things then say "sorry our mistake" it's actually pretty bad, we'll have to throw all our preconceptions out the window and start again"

  • ....sorry, I sound a bit bitter. I'm not but I am frustrated and in need of some reassurances that sometimes these things ARE what they seem.

  • I'm noticing my last few posts are less positive. I think my head is beginning to feel the pressure and maybe I'm not Thinking straight. Sorry ladies, don't mean to be a drama queen, I might just be on a "down loop" just now. I'll go find something to do.

  • It is so very daunting, all I can say is I was so worried about telling my Mum who is nearly eighty, she had been through the same as me and I didn't want her to worry about me. We sat and had coffee and I plucked up the courage to tell her. She amazed me with her positivity - she just said you have to go through this Lou, they know what they are doing and it's a journey none of us expect to be on, but you just have to to keep going and know that you will be okay. She was my inspiration - I thought about her through every part of this and knew that if my Mum at the age of 70 could get through this then I could too. I too had my doubts at the back of my mind, there were so many what ifs.- I really had to try not to overthink things, the bit my family and friends saw was a positive me, but inside I was all over the place. Just try to keep strong. Louise xx

  • You have every reason to be feeling low. The pressure is huge, the fear is real, the emotional strain is dreadful, the psychological worry is a curse. I needed to be strong for everyone here and did not want my family to see how worried I was. Nights were the worst, I would use this quiet time to think and sometimes cry. I would write my feelings in a journal along with all my questions. These questions came with me to the appointments or I would phone up and ask the breast care team. Its just one way that I found helped me. I would then put on my favourite movies and fall asleep. Naturally this wasnt every night but on my low and worst times. You need these times and need to get them out of your system so dont be hard on yourself. Good Luck Thursday and I and all of us here will be looking forward to hearing some good news that they have caught it all. Take care and remember .... You've got this, you are stronger than you think and having a positive attitude is half the battle 😉 Big hugs Lainey xxx

  • Hi lainey, I wish you a massive hug. You've got the kindest heart and I bless you and all the other big hearted ladies on this forum. I don't feel I'm going through all this alone anymore. Xxx

  • You are not alone. We do a great job of carrying each other through this. Stay strong.. xxx

  • Hey Glenshellach. My facts are a little different and your later posts explain your doubts.

    For me I just kept going back and asking the same questions - worded different,y each time I thought of them - until I got enough answers with a bit more detail each time, that, as I reread my hand written notes I gradually realised the answers were the same, I just needed to keep hearing them until they became understandable and sank in. I asked Macmillan, my GP, 2 breast care nurses following change of hospital, 2 breast surgeons over 2 separate consultations following hospital move (for my convenience for surgery) and finally a telephone call with the 2nd breast surgeon.

    It's not wrong to question and I always say if there is a question to ask there's no reason not to ask it.

    I thought My goalposts kept being moved until finally the 2nd nurse gave me the same answer - & explanation - for a 2nd time and so I trusted the answer. My future treatments were dependent on what was found in my tissue following surgery. This I understood. So yes the goalposts could move up til then.

    This was 6 days before surgery- mastectomy - & one of my questions was: why mastectomy? So it was quite important that I understood and accepted that! I finally understood, accepted it and have learnt to trust my nurse and surgeon who both now know I am someone who will ask lots of questions!

    I sincerely hope this help

    Sending lots of hugs xxx.

  • I was lucky my lump was tiny and only grade one. Unfortunatly when they did the lumpectomy they found some really tiny lumps which did not show up. My decision was to have a mascetomy and reconstruction. Luckily i did not have to have any chemo or radiotherapy x

  • I had stage 0 on my left and stage 1 on my right. Bilateral mastectomy 11-16-16 and reconstruction the same day, then to find out that i have to go to another surgery on my left after the pathologist report. Second surgery done 12-16-16 and saw Radiation Oncologist 1-9-17 and didnt recommend radiation. Started my Tamoxifen 1-11-17 and will follow up with my plastic surgeon for my expanders that was placed 11-16-16. Praying for all for total remission. No woman deserve to undergo such dilemna... this is our battle and we will all conquer it.. Be strong... you will be healed...

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