No one will come with me for a private 2nd opinion - should I bother going alone?

I spend so much time online. I found this private chain - to cut a long story short they made me an appointment for Wed 31 Oct. I live miles from the clinic I would have to go to as that is where their chief breast consultant is.
I think I am going to have to try and cancel it tomorrow asap becauae if you don’t give 48 hours notice you are charged anyway. The breast surgeon consultant costs £300. Any tests wouuld cost more. It would cost £50 to go by train (I can’t drive.)
Elderly father, boyfriend, best friend all think it is a waste of time and money. No-one is able or willing to come with me. I have had comments like “clutching at straws” - which is true. Also comments like for £300 of course he will agree to see you. I also think it is expensive myself. My friend says she understands I am desperate. She thinks it is too late now. My Dad says I’m 43, old enough to go but he can’t go such a long way. He said it’s getting to him - he can’t sleep and has lost weight. I feel awful thinking I am putting him through suffering. Boyfriend thinks it’s pointless and won’t take time off work.
I think I want to be told that I don’t need a complete mastectomy and could have another WLE or quadrectomy or be told by this top surgone/expert that there really is no alternativer, and then I suppose I would have to accept it, as much as I hate it, dread it.
If I was on my own, hundreds of miles from where I live, I don’t know if I would be emotionally capable of getting home. It would be about 3 hours journey each way.
I feel like if I don;t go I will always think “was there another way?” And I will blame people for not letting me try. I don’t know what to do.
I have invasive lobular, a failed WLE that couldn’t get adequate margins and they found it was multifocal. They want to do a mastectomy, and they have rushed it forward from 9 Nov 6 Novemeber, next Tuesday.
I said but what if the rest of my brest is clear - you can’t put it back in. They more or less said they don’t know but can’t take the risk, and it would prevent recurrence.
Annyway should I cancel this appointment? Thanks.

Hi , Yes I think I would. It is an awful lot of money and also a long train journey on your own as your family and Friends cannot go with you for various reasons.I think I would cancel.
You could get a second opinion at your own hospital from another surgeon as they all have their own ideas. However a mx is always recommended if the lump is large. I remember asking my surgeon if I could have a lumpectomy and she said if you had been bigger breasted then maybe, but no chance sorry. She was very decisive and did me an immediate reconstruction which I am very pleased with.
Perhaps you could concentrate on the reconstruction of your breast instead ,as I think this would help you focus on something else.
I wonder if any other ladies have paid for a private opinion.? Take good care of yourself . Tracy x

Hi, I want to live,
I agree with Tracy and think you should cancel your private appointment. You can get a second opinion on the NHS. Just to let you know I wasn’t given an option as the lump in relation to my breast size made a mx the only course of treatment possible. I have a friend with lobular breast cancer in both breasts and she has been recommended a double mx but has not agreed to it yet but expects she will at some point. You have to do what is best for you and reconstruction surgery is an avenue many women go down.
Take care, Liz.

For what its worth I completely agree with Traceyld
Wishing you all the best, whatever you decide, please let us know how you get on xxx

Hello again ,
I have just had a thought? Have you been given any Diazepam for your anxiety? I can tell that your anxiety levels are going through the roof and I feel you need this to keep you calm.
I was given this when the Chemo sent me into a medically induced menopause and the Tamoxifen sent me into a deep severe depression.I was of course put on anti depressants as well. I do think I would ask your friend or OH to go to your GP with you and explain how you are and how you simply cannot cope with the horrible feelings. I promise you soon you will come out of this big black hole but in the meantime you do need to admit that you need a bit of help to get through it. Tell your best friend and go and get the help you deserve.
Sending you big hugs and next time you post , tell us your name and how old you are, so we can all hold you in our thoughts.
Love Tracy xxx

I would also say that you can request a second opinion on the nhs and no extensive charges except travel costs… If you have a recurrence which it sounds like from your post then normally after wle and rads they would do a mastectomy as they cannot give rads again and obviously if you had a recurrence then the already irradiated breast hasnt stopped the cancer from returning and rads reduce the risk by about a third… but even so if the cancer is small enough to do another wle and you are aware of the risks then you should be able to have the surgery you want… if its larger they can also give chemo or hormones to shrink the lump first too but your docs would be able to discuss this all with you… I think probably a good first step would be to get a second opinion And take it from there.

lulu xx

I had a mastectomy and I wouldn’t have had anything less. Less chance of IT coming back. Sounds like you are in denial - one of the steps of grief. Get angry instead, get determined to beat it. Fight IT not the people who are trying to save you.
If it was me I would cancel the appointment, save the money to put towards a celebration when you get good news.

Hi, I just thought this might help you to understand the reason more (really hoping this does not make you feel worse). ‘An infiltrating ductal cancer firms a hard,firm lump because scar tissue around the cells causes a lot of reaction. Infiltrating lobular cancer, on the other hand is sneaky.It sends individual cells in fingerlike projections (cells extending in a line, single file) out into the tissues without inciting a lot of reaction around them, and so you may feel it as a little thickening rather than a hard lump. For this reason its harder for surgeons to tell if they’ve got the lobular cancer all out:the little projections can’t be felt as easily as a hard lump.’ It goes on to say the prognosis is the same for both of these type so please don’t think anything worse.
I think I would cancel the private appointment if it was me and follow Lulu’s advice. There may even be another consultant at your hospital to talk to. At mine, a whole team meet to discuss every case so you automatically have more than one opinion, this could be the case for you too. I think its really important that you feel confident in your team and your treatment so asking to go in for a chat with a breast care nurse might be another avenue to consider. From there they would get any answers that they cannot give themselves and they can usually fit you in the same day. Have they offered you the chance of an immediate recon, you haven’t mentioned recons at all. This might be something you would find easier to bear. Best of luck from me and everyone else here and keep us posted. Sorry to hear you are having such a terribly stressful time love Lily x x

Morning, Thinking of you x Let us know what happens today x We all care x

Hi I want to live,

Please give the helpline here a ring this morning, they’re here to support you through this. Lines open at 9am 0808 800 6000, calls are free.

Jo, Facilitator

Hi I want to live
Regarding going private
I agree with the others speak to someone else at your hospital either the breast care nurses or another member of the team or Macmillan. I know no one can walk in your shoes but we have all walked in similar, I had a lumpectomy 17 years ago, node clearance and then radiotherapy, then 6 years ago (almost) found another lump so this time had mastectomy chemo reconstruction, in hind sight I do wonder if I had had the mastectomy first time it would have saved the second episode but I think i would have been devistated but then having it a second time wasnt easy either!!!
I think what I am trying to say is, talk talk and talk more before you make your mind up, so I would cancel the private doctor (save the money and treat yourself once the op has been done) ring your breast nurses and then see if they have Macmillan support or someone similar to talk to I think if you can get your head around this firstly you will be in a better place before the op.
Good Luck
L

Ps keep posting on here there are some lvely ladies on the site and they really helped me

I am so sorry that your friends and family are not supporting you it is your decision and if you want to go private and pay then they should at least respect that even if they don’t agree. However I don’t think a private consultant will tell you anything different - most private consultants also treat on NHS and because you are private only means you get to see them quicker - with cancer you don’t get any different treatment as the NHS treatment is the best anyhow. I do think you would be wasting your time and money and if you want to discuss it more speak to your BCN - she will explain why they feel a mastectomy is the best option for you and like everyone says you could always ask for a second opinion on the NHS and you would get that fairly quickly. I had a WLE first (at my bidding) as I couldn’t bear to lose my breast - but they didn’t get clear margins and I then had to have a mastectomy - for me it was such a huge thing to bear and I was so upset by losing my breast and couldn’t believe I would ever be normal again - I sobbed and sobbed for days. However I had the mastectomy as advised, I couldn’t have an immediate reconstruction due to having to have radiotheropy as well - and I opted for a delayed one - I am so pleased with the results and I look almost perfect again. The most important thing is to get rid of that cancer - get it out of your body and whilst you will mourn for your breast there is a future for you and there is life after a mastectomy. You may chose to live breast free, or with your prothesis or go for immediate or delayed construction but there are many many of us who have been through the torment that you are going through and there is a light at the end of that dark dark tunnel I promise you xxx

Thank you all for your posts. As everyone here is/has been in similar situations I decided I should take the advice of people who understand the most.
I rang the private clinic this morning and cancelled.
Logically I think it was too far to go alone and expensive and might have been a waste of time.
Emotionally I have a few tears as I feel like my last chance to try and avoid mastectomy, if there ever was one, has gone.
I don’t think there is time for a second opinion on the NHS.
The mastectomy is scheduled for next Tuesday, 6 November. I still don’t think I will ever feel ready for it.
I can only have a delayed reconstruction with extender implant because they want to do radiotherapy after chemo. I’m not sure why. I thought you didn’t need radio if you have your whole breast off. Maybe it is because of my age - 43.

Good for you…Mx isn’t that bad…you get used to it and as I have said above…if it’s your best chance…go for it…the relief afterwards for me outweighed the worry of the dx…if I had to do it again then I wouldn’t hesitate…PS…I cried all the way to the hossie…all the night before and on the way to the theatre…afterwards and for about a week later so you’re not on your own there either…

Hi
I totally agree…you should cancel this appt…ST is also right on the money…I opted for my Mx out of choice…I had grade 3…IDC…2 nodes with mets and said from the outset if the nodes were involved it was coming off…don’t get me wrong…I cried a lake…but…it gave me a better chance of losing my gremlin than messing about with a WLE…I would’ve worried…had to have rads as well as chemo and I don’t lose any sleep about having just one boob…use the money to treat yourself…I am just a bit worried why your OH won’t take any time off work…I also think you need diazipam as well as an anti depressant…I was give both of these in the early days of my Mx as I went a bit bananas with the stress…

posts the wrong way round!!!

I also think you have done the right thing cancelling the appointment. Realistically I don’t think you are going to be given different information / advice as it sounds like it is the fact that it is multi-focal that is making them advise a MX. I know the prospect of it it horrendous but I don’t think the NHS doctors would be advising the MX if they didn’t think it was necessary. They were obviously willing to give the WLE a go - but the results of that have changed things. I had a similar experience - went into my first WLE diagnosed with non-invasive DCIS and told I would only need radiotherapy. Results of surgery came back and now I have invasive ductal cancer and will need chemotherapy, radiotherapy and five years of hormone treatment. Not what I wanted to hear but that is the hand I have been dealt.

I know I have replied to one of your posts before and you were saying how emotional and anxious you are feeling - which is completely understandable. I don’t think your family mean to be uncaring though or unsupportive - I think they are just trying to help you accept the situation in the best way they know how.

Hello there,
Well Done on cancelling the private appointment. You should be proud of yourself. I would now ask your best friend to go along with you to the GP as she can help explain how anxious you feel about losing your breast. I was wondering if you did ring the help line ? because everyone on the end of the line can keep you calm and help you get through the negative thoughts.
Wishing you all the best for the next few days, keep busy and get out in the fresh air for some short walks to help clear your head. Take good care of yourself Tracy x

Hello again IWTL - I started with a WLE and axillary clearance and although the margins were clear the pathology report showed it was multifocal, along with other issues. I desperately didn’t want a mx but I was assured it was necessary to be sure to get rid of the cancer. I had chemo and also rads (I’m 47). As hard as it is (I haven’t had any form of recon yet but am anxious to as soon as possible), they are trying to do their best for you, so the rads is the belt and braces. I haven’t had any other treatment because I’m triple negative.

I really do feel for you and wish you didn’t have to go through it but for your own sake, it’s necessary. With the cancer being multifocal I think you would keep worrying if you just stuck with the WLE.

Best of luck on 6 November. Keep talking to the ladies on the Forum. They’ll help you through it all and you can tell them things that other people wouldn’t understand - paricularly the BCC helpline - I can’t stress how amazing they are at calming you down when you feel really fraught.
Flori
X

Hi again IWTL

you dont have to have the mastectomy on the 6th if your not ready for it… Another week or so wont make a great difference in the grand scheme… But if you feel your in the right place to have the mastectomy go ahead… Just dont feel pressurised to do something you are going to regret… however you do have to weigh up the fact that they are recommending a mastectomy… But please call your BCN tomorrow and explain how you feel and ask how quickly you could get a second opinion… If they also recommend a mastectomy do you feel this help you?

lulu xx