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.
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 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!
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.
Hi Maria, the mri will help the surgeon to decide what surgery is necessary. The final results, including size, will be confirmed after surgery once the whole thing, as well as the node biopsy has been looked at in the lab. The rest of treatment plan will then be confirmed after that.
ann x
I have a great fondness for UCH being a North Londoner.
I had to nip in there a few weeks back when I had a total melt down along the Euston Road.
Everyone was so lovely to me.
IDC, 15mm, radiotherapy was no problem at all but i did take 6 weeks off work to just give me some me time.
Re work. Do what you feel is right for you.
I should never have gone back after my surgery but didn’t realise at the time how much I needed that time for me. Hence the meltdown on the way to a meeting.
I just didn’t want to work, i just wanted time away to get used to the idea of what was going on.
If you can work your rads around your work then go for it. I had hoped that I could but emotionally i just wasn’t strong enough.
?
Yes, Maria, they wouldn’t say that otherwise. An SNB is usually done with surgery, that will give the definitive results. As ever, the waiting is what it is & we’ve all been through it. The team will say it how it is, so I found it helped to go with that & try not to get into the ‘what ifs.’
ann x
Hi Maria,
Hopefully one of the others who have gone privately will be along shortly.
Both will follow NICE guidance, so for conventional treatment, there should not be any difference in the treatment offered & timescales are usually similar, but of course, there might be a less of a wait if going privately & possibly less waiting around in clinics etc, however, I personal experience on the NHS was fine on this & I did not have any undue waiting for anything.
One point others who have gone privately have reported that there have been issues with duplication & there may not be access to other support, such as BCNs, but of course, you would have quick access to the consultant privately.
My surgery was done as a day case, so depending on what surgery you have, you may not need a hospital stay anyway & vomiting is highly unlikely! I woke up ravenous & tea & toast never tasted so good!
Others here have requested certain surgeons on the NHS, but there might be a longer wait, but worth asking about.
ann x
I initially was referred on to Guys for my surgery (lobular carcinoma of 11cms spread meant straight to mastectomy) for reconstruction (which I ended up unable to have). After two surgery’s I got my care transferred back locally for chemo because of the sheer cost, both money and time wise, of getting to appointmens. The care was no better than I’d have got locally. I wasn’t even on the breast ward for my op, I was shoved on a urology ward where no one could find me hence being left with nothing to eat or drink for 22 hours ( not great when you are diabetic). I’m now having chemo locally and my oncologist also does non NHS work and is pretty highly rated so the care I’m getting would be no better privately.
Marla, i think you’ve hit the nail on the head by saying you need to take it a step at a time and slow down a bit.
My only option was the NHS and I can’t fault them. Even before diagnosis I had been allocated a BCN. Never even thought to do any research on my surgical team, I put my everything in to having faith in the NHS and was so busy trying to handle my diagnosis I let them just steer me in the right direction.
So sorry I can’t offer an insight to both.
Just go with your gut. And if you flip a coin and think before it lands, which option you hope it lands on, then thats your answer.
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 ?
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