Thanks for clarifying why the wait Daisiemoo. That makes sense. Sounds like you are taking all sensible precautions by considering having the other breast removed...so many people do-it makes so much sense. Good good luck with your next step. I'm sure I will be here, following your progress and hopefully a little further along with my journey. I have yet to have my MRI, and then the fun begins . xxxxx
Hi Marla, have to wait a year due to radiotherapy as the skin needs that time to get over the rads, if done sooner more chance of complications and as I would like a DIEP I will do everything possible to get a good result.
I was slightly unusual that I had a masectomy and also radiotherapy, usually if you have a masectomy then rads are not needed but high grade DCIS large area & 2x IDC grade 2 within- wasn’t going to argue. ER+ so also now on Tamoxifen ( cut out as much sugar as possible so no side effects of joint pain and achy/painful legs- a few hot moments but nothing to bad.
Other thing is if I am BRCA2 then gives enough time to decide what to do... might choose to have other side masectomy and then have a double reconstruction in June, so the wait is ok..... we’ll only just as would love to have it done now, just because I won’t the whole thing over and finished... well until the next mammogram 😂🙄 never ending this next appointment thing 😊
Hope you are happy with your decision and all goes well
Thanks for sharing your experience with me Daisiemoo. (I love your name)! I'm pleased to hear you have come out the other end and are all done bar the reconstruction surgery & BRAC2 testing. It's also reassuring to hear you were able to mix and match private/NHS. That was one of the things I needed clarification on, and the surgeon who I emailed on week-end and who got back to me on week-end concurred. Thanks for the added reassurance-it's always good to hear from someone who's actually done it.
Best of luck with your reconstruction. Do you mind me asking: why do you have to wait a year? Is the surgeon you are wanting it with no available till then?
Hello Marla, I was diagnosed in March following routine mammogram and saw my surgeon, who I actually preferred for my first appointment, but needed an MRI and I chose to do this private (have work private insurance) as it was a week early - very nice with tea and biscuits 😊
Then went private to see the same surgeon and have my surgery, I chose this as timing was quicker and also the private room and fab staff helped. There were no visitor specified time so my partner could visit me morning and later in the evening. I had to have a 2nd op the day after my mastectomy due to a bleed and if I was NHS I know I would have been sent home but I said I wanted it sorted before I went home and so it was.
i had already met my BCN when on the NHS and I still had contact with her.
I also needed radiotherapy and again went private as it was left side and the o colonist said the machine was better in the private hospital compared to the NHs local one so I went private.
My prosthesis I went via the NHS so you can mix up the two.
I plan on having my reconstruction next year privately only because of timing and the surgeon I want.
Just now need to get my BRCA2 test completed and see what that result might be....always something to wait for 😳
Thanks Lilachmoon. I'm going to have the MRI first of all and then base whatever decisions I need to make on the outcome of that. It makes life a little easier now. I'm going to see a film this afternoon to get my mind off all of this. Thanks very much for your input...I value all of your messages more than you know!
I'm so sorry to hear of your experience. My mum is diabetic so I understand your need to be fed all too well. That's awful. I'm pleased for you that are now having your chemo locally-that must be so much better/easier for you and that you're happy with your oncologist. Thank you for your input.
I hope it all continues to go well for you....
Thanks for your input. I definitely don't want my cake and eat it but for what I'm paying for my health insurance each month, I'm trying to make a measured decision as to whether to use it. On balance, it sounds like the treatment is the same whether I go private or NHS. As I said to my friend this AM, if I did go the private route, it would also free up an NHS spot for someone who doesn't have health insurance, so really, it's a win win for all.
In all honestly, those of us with health insurance don't want our cake and eat it (we don't want it all) but we do want to know the pros and cons of whatever decision we make, as we are all entitled to know.
With all best wishes,
Basically you can't have your cake and eat it. Most people don't have the choice, only you can decide what is best for you overall. Mostly I have been happy with the NHS so far, private is not always best and sometimes this does mean waiting and seeing different people in the NHS system. I know from speaking to others that not all hospitals are as good as each other so it is important to make sure you are happy with the hospital you choose if you decide to stick with the NHS. Good luck with your decision. Go with what your heart tells you as everyone's circumstances are different.
Thanks very much Ann-m! I really appreciate your input.
I had actually emailed 2 consultants this week-end and both replied (on a week-end)! Both are NHS but also have private clinics, and one of them included in her email:
"You get more time with the breast clinical nurse specialist at the (private hospital)" and said that other than speed, it's the same team I'd be seen by (more or less )-same pathologist, etc. but if I went private I'd know I am getting her as my surgeon.
So I feel reassured that I would have access to a BCN, but I do take your point. It's important for me to know what the differences are between NHS and private, and it seems from what this consultant says-none as far as treatment goes, but that the speed at which I can be seen would be faster if I go privately. I've chatted with a friend this AM and she agrees that I may feel more comfortable in a private setting but that the treatment should be on par with the NHS. I've decided that I am going to go down the NHS route to start with and then decide what I want to do re-surgery when the time comes to make that decision (once I know what I am dealing with). . I think that makes sense and allows me to slow down a bit and just take it step by step.
Hi ladies....I hope you are all having a good week-end? I really wanted today to just focus on *me*, and to do some reading for work, and take my mind off all of this, but but I still have so many questions and need to let the clinic know tomorrow, where I want them to refer, and am hoping some of you may be able to contribute.
I've finally decided upon UCLH as the hospital I'd like to be referred to, mainly because of the + stories I've heard from many of you. However (and apologies for complicating matters)-I have private health insurance, and am wondering whether I should see the surgeon I have my eye on (I've been researching surgeons), privately.
I found a surgeon who works at UCLH and he also works privately. Am I right in thinking that when I let the clinic know that I want to be referred to UCLH, that they will be referring to that "center" (i.e., UCLH) as opposed to a particlar surgeon? In other words, if I go down the NHS route, I cannot choose my surgeon?
Do most people research surgeons before surgery and have preferences, or do you just go with the flow and with who you are allocated to (when on the NHS)?
My only experinence with surgery (thankfully) are three fibroid operations, and I went down the private route for all of them, & was obviously able to just ring the private hospital I wanted to be seen at, and request to be seen by "X" surgeon, so I'm just wondering how it works if I go down the NHS route for cancer treatment.
I've had some input from a colleague (he's a psychiatrist, NHS based and private, and affiliated with UCL) and he advised that the advantage to going down the private route is that my insurance co. may have access to some drugs that I may not be able to get on the NHS (should I need x, y or z) but he also said (a "tick" for the NHS) that the MRI machines on the NHS are more powerful. I don't know if he has any evidence for this but it does sound strange. *Are* the machines and equipmment far superior on the NHS? In particular, at UCLH?
I have a few Q's (in addition to the above): numbering them for ease:
1. If I was to go down the private route: am I to assume that the *treatment* I receive would be same as on the NHS? I know there are "teams" looking after you on the NHS-are the private hospitals (for cancer care) "manned" in the same way, i.e., a good size team looking after you?
2. And I right in thinking that if I go down the NHS route-do you share a room with others or do you have your own room (after surgery)? I tend to feel queasy after general anaesthetic and prefer to vomit in private.
3. My colleague friend mentioned that when he was treated for cancer on the NHS (he is a huge fan of the NHS) but he did say that often clinics over-run, and that I would in all likelihood only get to see my surgeon/consultant once, and then all subsequent appts would be with the Junior doctors/SHO's (I forget what they are called)-whereas if I go private I would get to see the consultant at each appt.
I'm just wondering what many of you would do *if* you had private health insurance?
4. I obviously need to find out if the insurance company will cover *all* costs-they suggested they would when I spoke to them yesterday but only if the treatments used are standard treatments and not so new that they haven't been approved by NICE yet.
5. A small blip is that the surgeon I have my eye on is not "fee assured" with my insurance co which means he may charge *more* than what they are happy to cover-which would mean I need to pay the difference.
6. I'm also still in two minds about being treated closer to home *only* in the event that I need chemo or radio. I've looked into the London Bridge Hospital (where I had shoulder treatment and was very happy) but am not sure what their cancer treatment is like and can only go by what's on their website.
St. Barts is nearer to me too but I've not any thumbs up for St. Barts. . My colleague (above) said he would only go to UCLH or the Marsden if he were me, but he lives in Islington so it's easy for him to say.
Looking forward to hearing from you-your input has been invaluable to me thus far.
Just checked quickly! To turn PM on, you need to click on "My Profile" and then "Preferences" and then Private Messenger, and enable private messages. If you would prefer not to do that, can send my email address to you.
Loolarch-it looks like you don't have private messages enabled. I'm not sure how to enable them (I think I did this when I signed up)-you may need to click on your profile name and look at some of the settings.
Bar this, I am happy to provide you with my email address if the above doesn't work. Let me know.
I'm popping out shortly (for a well needed break from my computer) but will be back later or first thing in the AM.
Thanks very much Loolarch...will try and PM you now. xxx
Hi Marla, as you know I had my treatment at UCLH and happy to tell you about my consultant and others I met there if you PM me, not sure how that works tho!
Thanks JaneBelinda! I've had 3 surgeries in the past and am very compliant when it comes to the fasting the night before. Sorry to hear they took you so late. It sounds like you are well past that now though-yay! I'm now in the process of looking up consultants-did you have your treatment in London (I can't recall and I can't see your previous messages at the moment)? If so, do you mind if I message you privately to ask who your consultant was? xxxx Addendum" I just checked your previous message-you're in Cambridge! So please ignore my request to PM you . xxxxx
Hi Marla, sorry for calling you Maria!
Dont worry about the anaesthetic but DO stick RIGIDLY to the no food or drink rule as that helps hugely. I was booked in for morning surgery and told not to eat anything after midnight before, and only small sips of water up until 6.30 am on the day. I had to be there for 7.30am. There were 5 of us booked for surgery and, as I was The youngest, went to theatre last...at 3.15 pm! They allowed me a few tiny sips of water. On the plus side, my surgeon came to visit me afterwards, on his way home, while I was mowing my way through a much needed egg sandwich. I just treated myself to a heap of magazines and has a lazy day of waiting on the ward until my time. I’m now healed well thank you.
The irritating thing about the rads is having the ball-ache of a trip to hospital, but I do it on the way home from the office so I’m kind of used to it now.
Once things start moving for you Marla, you’ll be surprised at how quickly everything happens and you just go with the flow 🙂 xx
You inspire me. Thanks for sharing your story. It's reassuring to know you didn't need much time off work. The post surgery time off is less my concern that the possible rads or chemo. I'm so very pleased to hear you haven't had any SE yet from the rads-and let's hope you don't. Bravo you! If I could write my own experience, it would be yours. I'm a "woos" when it comes to nausea/being sick so am dreading a) the general anaesthetic and b) if I do need chemo/radio therapy. In any event, what will be, will be.
I hope your treatment continues to go well and that you are healing well from surgery.
Maria, I too am self employed, running a busy creative agency. I was diagnosed with a 30mm G1 invasive lobular carcinoma 28 May. 28 June I had surgery, had the next day off resting, then the weekend....then back to work, driving, on the Monday. I had wide excision plus SNB just to be sure, even though ultrasounds showed no cancer in the lymphs. I am now part way through rads. No side effects yet and it’s all very painless and quite interesting really. I had no choice re hospitals but am happy with mine here in Cambridgeshire.
All the best xxx
Thanks Ann! I was only given the confirmed diagnosis today and my mind has been working overtime. I really do need to stop reading into the future and imaging all the possible "what-if" scenarios. Easier said than done! I'm going to try and get a decent night sleep...thanks for all your support. xxxx
Thanks very much for this Lilac. I think my decision will be based on how I feel. I don't do "queasy" well and god knows what other side effects might come. I honestly don't know if I will need chemo/radiotherapy but my mind is working overtime at the moment-I only received the confirmed diagnosis today. It's been quite a day.
I like your idea of taking "me-time". I work as a psychotherapist and find it difficult to put "me" first. I think I may have to start.
Thanks Lilacmoon! I'm sorry to hear you had a meltdown, but how great that you felt able to walk in there for support. I'm glad you mentioned work because I'm self employed and actually wondering how much time I will need to take off a) post surgery and b) during chemo/radio if indeed I need either.
I support only time will tell and I'll find out more re-the surgery recovery period when I meet with the consultant. I first need to sort the referral out on Monday. I'm very much leaning towards UCH.
St. Barts (in the City) would be closer for me but so far, haven't heard of anyone having had treatment there. If there are any ladies who have, would really love to hear from you! xxxx
Thanks very much Ann! I am quite sure the nurse this morning told me that (from the biopsy) they are satisfied that it hasn't spread to the lymph nodes. Am I right in thinking they can tell this from the biopsy? I sort of assumed they will only know whether it has spread after surgery but my father (who had colon cancer last year) said they were able to tell him, from his biopsy, that it hadn't spread. I'm sure that's what she said this morning but I will feel more reassured once the MRI and surgery are done. xxxx
No worries Paulus-how annoying! I've been there too. It's exhausting having to re-type everything-take your time-there is no hurry. xxxx
Thanks so much Ann-m for sharing your story and experience with me. It's a relief to hear I may not need chemo. Yes, I do believe the nurse today told me I am HER- as opposed to + but I'm guessing that all will become more clear when I see the surgeon after the MRI. I'm leaning towards UCH since a few people have had + experiences there. I'm still very open to hearing about others' experieces of their hospitals, surgeons, etc. Also, and just to say: I've not been given any measurements, i.e., 7 mms. I presume that's because I don't have a lump per-se, but it is more an areas of tissue that shows cancer cells. xxxx
My diagnosis was similar, mixed ductal & lobular bc, er+, grade 2. It was small at 7mms.
Because of the lobular element, I had an mri scan as it doesn't show up well on mammo, so this is standard for those of us with lobular bc.
I had a WLE (wide local excision) & SNB (sentinal node biopsy), the bc was removed with good margins & no node involvement, so chemo was not needed.
I found radiotherapy fine to deal with & oddly, I quite enjoyed it as you get to know the team & others in your time slot. Many work through rads, although it can be tiring.
If your bc is Her-, then that's fine & depending on your final results you may not need chemo. If the bc is Her+, then I understand that chemo has to be given along with herceptin as that is the recommended treatment protocol.
As you're er+, as most of us are, you will most likely be offered hormone treatment to block the action of oestrogen to fuel the bc. This is normally recommended for up to 10 years post diagnosis. I'm on tamoxifen without any issues & you'll cross that bridge when & if you need to.
Because the cancer is/was a Grade 3, and also in a lymph node, the general practise from what I understand, is chemotherapy, or what they call neoadjuvant chemo, where they aim to shrink the tumour before they carry out surgery. The surgeon discussed this, and referred me to the oncologist prior to surgery, but I was adamant that I did not want chemo. The oncologist most definitely thought I was taking a risk by refusing her advice, but was very diplomatic. Her job is to recommend what she feels is the best possible outcome, but I was what they politely call " active in my treatment " !!
I understood why I should have the radiotherapy ( which probably would have been as well as chemo, depending on what chemo might have done for me, possibly in shrinking the tumour before surgery, but as I say, I 'deleted' that consideration) - because it pretty much seems to go hand-in-hand with a wide local excision/lumpectomy, in 'mopping up' rogue cells. It was so good to have that discussion with the radiotherapy consultant and understand why she felt it a good treatment, from her personal perspective, before I signed consent for that. I didn't 'want' R/T for sure, but I regard it as a much less invasive procedure than chemo - and for me, personally, I felt it essential, because I did not have good margins after the surgery.
The radiotherapy staff are all lovely - the radiotherapy area is bright and welcoming - and the treatments - for me - were not a problem. I am lucky in that treatments themselves gave me no problem, and since I finished, I have had some minor side effects, but nothing unmanageable? I used natural oils from the day I started, and while I do have some redness and dryness still, it really is not a problem. I am truly sorry for anyone who has suffered with R/T treatment, and I regard myself as lucky.
I took the bus and underground every day of those 20 days, armed with a bottle of water and a book, and sometimes went for a walk around London sights before or after, time depending. When you are first told 15 - 20 days, you think " OMG this is going to be a pain " - but you get to see the occasional familiar face and chat, and as you tick the days off, you tell yourself that you are doing this for YOU ? R/T has not impacted on my day-to-day life, I still go out and about every day.
Sorry if I prattle on, but I am trying to remember the good and the difficult, and feel free to ask.
Hi Paulus-oh my goodness! Thank you for taking the time to provide such detail. I have a couple of follow-up questions for you, if you don't mind: re-the chemo-are you saying that you opted *not* to have chemo? If so, did the consultants have any opinion on that? My limited knowledge on this is that I thought chemo normally preceeds radiotherapy (I realise I might be completely ignorant here) and didn't know that you could have radiotherapy (and that it can be successful) without having had chemo. Again-and to repeat: I do not know what I am talking about! These are my assumptions based on what I've heard in the past re-general cancer conversations. I'm just trying to get my head around it because if I'm honest, chemo does not appeal to me either.
My other (related question): is radiotherapy easier than chemo or are they both equally unpleasant?
I'm so naive when it comes to both but am just trying to find out more.
A bit more about me:
I'm 51 and definitely menopausal. No BC in my immediate family-maternal grandmother's sister is closest relative to me who had it.
I was diagnosed there in early March, after I said to my gp " if it were you, where would you go? "
So I was there from the get-go - the 'one-stop shop' at the Macmillan Centre, where I had the consultant examination, mammo, and ultrasound biopsies ( breast lump and suspect lymph node) on the day I first went - a few hours later the results indicated cancer in both - then began very frequent phone calls from UCLH with appointments, for CT scan and bone scan ( to see if we were in trouble beyond the node ), and follow-up with results-proper.
Invasive ductal, Grade 3, ER8, HER2 inconclusive - and in the lymph node. I am 63, no previous BC history, or in the family, as far as I know.
Grade 3 and lymph node gave a heads-up for chemo, but I was always anti-chemo before diagnosis, when diagnosed, and at both oncology appointments. So that slammed a door shut, but as I say, I'm 63, and my quality of life was top priority for me, while I completely respect and understand why most people will have it when recommended. I am not a good example in doing everything recommended, my responsibility.
So I had wide local excision in early May, with axillary node clearance.
Whole surgery experience was the bees knees, and that's from someone who has never had general anaethesia in her life and was terrified. After care good, discharged the next day with one drain, that I was able to have removed 3 days later, painfree and simple procedure.
For me in discussion with the consultant/surgeon these were the things most clear in my head :
I had a lump (2.2cm) that had to go.( I did not have good margins, the surgeon explained at follow up appt.)
I needed the axillary node clearance because of cancer presence ( 11 removed, cancer in 1 )
I would need radiotherapy in an effort to 'mop up' after surgery.
I had 20 zaps of radiotherapy - the 15 standard and the 5 boosters. I saw a radiotherapy consultant before agreeing and signing for this treatment, who explained the whys and the wherefores of R/T.
I finished R/T on 7 August.
I am taking Letrozole - for about 6-7 weeks so far - because of the strong oestrogen-element (even though I am a good few years post-menopausal).
Loolarch-you are a star. Thanks so much for sharing your experience at UCLH with me. I feel an affinity to them since I studied at UCL (1993) but I just want to make the best decision for myself, keeping in mind that I *may* need to travel there on a daily basis if chemo/radio is required. I am so pleased to hear your experience has been + there. xxx
HI Marla, I was in a similar situation as I also had to choose a hospital for treatment. I went for UCLH, where I had scans, biopsies and then a bilateral mastectomy in July. I really can't fault it, the staff are all lovely, and I have had excellent care and kindness from everyone I have met there, and the surgeons did a very neat job. Good luck!
Hi Paulus, thanks a million for a thumbs up for UCLH. I'm not on the Victoria Line but I should be fine to get there even by cab. Can I ask: what treatment did you have there? xxxx
I've just had a call from a male friend who said that his (male) cousin was also treated at UCH and the treatment was excellent. Two thumbs up for UCH.
Sorry for your news, but good that you know what you are now dealing with. Hugs.
I was treated at the UCLH - they have a separate building from the main hospital building, the UCLH Macmillan Centre, where I had the diagnostics and meetings with BCN's, consultants, surgeons - scans, surgery and radiotherapy are done in the main hospital and from my personal perspective I can not fault the hospital and my treatment and care. If you can access the Victoria Line from Walthamstow with a certain amount of ease, then the journey is a breeze, straight to Warren Street Station - the hospital is literally on the doorstep of the tube station. Please message me if you want to and I'll help you however I can. x
Hi lovely ladies,
I received my biopsy results today and was told that I have Grade 2 Invasive ductal carcinoma (IDC) with elements of lobular carcinoma. This was done at an InHealth Community clinic and the mammographer said that I now need to decide what hospital I want them to refer me to for my MRI with a view to surgery.
They are affiliated with King George Hospital in Romford, but I am aware that UCH and the Royal Marsden have very good reputations, as does St. Barts in the City. I live in East London and my concerns about UCH and the Marsden are...if I need chemo or radiotherapy, will I want to do the long journey daily?
I have reached out to a friend who's mum had breast cancer to ask where she was treated, and also to a colleague who was treated for prostate cancer. I obviously want to go to the hospital where I will get the best treatment but am mindful of what might be involved if I need to make a daily commute after surgery for all the other treatments that might be involved.
This is such an important decision, and one I need to make before Monday so that I can phone them and get the referral ball rolling.
I'm still trying to make sense of all of the clinical information I received today; was told I am estrogen + and that my biopsy sample didn't excrete any HER 2. (I forget whether this is good news or bad).
Looking forward to your thoughts on how to choose a hospital/surgeon, etc.