Hi all. I was diagnosed in December with IDC ER PR + HER2 -. What was initially lumpectomy radiation has evolved into what feels like a never ending journey.
1st surgery 7th Jan confirmed it was Grade 3 and oncotype test sent off. Margins were not clear with IDC and DCIS in them. Confirmed chemo recommended as oncotype 44, referral to oncology.
2nd surgery 11th March confirmed Thursday that margins are still not clear, with a total of 2.5cm areas of DCIS across the margins. Recommended by consultant to consider a mastectomy post chemo due to the number of areas with DCIS and the high change of margins not being clear.
He talked about the options (flat/Diep) and the surgery and I’ll be honest it has consumed me since and I don’t think I fully took it all in!
I still don’t know my chemo plan, as in how many cycles etc, have oncology appointment booked for the 14th. I don’t know when it will start, I expect May sometime. I presume this takes me up August and then with a Mastectomy around September/October, with the recovery, life unlikely to be any form of normal till early next year! It’s just feels like a never ending journey that I have no control over. Really struggling this weekend.
Oh that’s so hard. It’s bad enough anyway, but when the uncertainty and the anxiety are prolonged it makes it so much worse. And I hate that feeling of being in limbo when you don’t know what’s going to happen when, and don’t feel like you can plan anything nice either in case it clashes. Hopefully you get a bit more clarity soon.
@lola12 I feel you. I feel every single part of your story with genuine pain and frustration on your behalf. It just feels like it goes on forever doesn’t it.
I’m not going to offer a bunch of platitudes. You don’t need that. Sorry you’re struggling, totally understandable. I’m hoping that this forum is of help while you process this latest development.
@lola12 I’m so sorry and know exactly how you feel. From the first appointments where you are offered surgery followed by endocrine therapy and assured you can go on your way. And then each following appointment gives you more bad news. I barely qualified for oncotype testing and my surgeon thought it would be a formality. Anyway, it wasn’t and I scored 29 and everything changed. The kitchen sink got thrown at me. But. My oncologist looks after me well. I am going nearly 18 months now and I’m just beginning to settle into my long term selection of drugs. I’m having one more bit of surgery but it is elective. I want to be fully flat. It takes a long time once you get that high onco score but I believe it is much better than being undertreated when your cancer will surely come back.
its such a long long road isnt it - so sorry you are dealing with this. once you have a plan re chemo it may ‘help’ in as much you will know time frames. I was diagnosed in June - had 5 months chemo / 2 surgeries/ about to start radio / on hormone meds. The only advice I guess is that just look at each stage of treatment, try not to look too far ahead - impossible I know!
@lola12 just seen this. Can’t really say more than all the other lovely posters but sending big hugs and feel your pain with the continued journey extensions. I am same oncotype as you and am presently in active treatment (3x EC chemo 3 weekly, 12 weekly paclitaxel) then radio and then long term surpressors etc. Still wonder with my scores if I will eventually be advised a mastectomy. We remain fluid and take one day and treatment at a time - it’s the only way I can stay sane and positive.
This is a rollercoaster and sometimes its information overload. High onco scores are scary and feel like being diagnosed all over again. Mine was 35. I try to look at it as a guide for what treatment is needed. That has helped. I got a full right masectomy. My tumour was too big for lumpectomy. I decided reconstruction can wait. Im an 4ac fortnightly and 12 weekly taxol. I’m now taking it round at a time. It can be overwhelming to look so far ahead. 1 ac done. Round 2 next week. Once you start the treatment it is more manageable. Its the unknown and limbo feeling that is hardest. I hope you find out your treatment and start date soon for clarity at least. Big hugs xx
So sorry to hear this. What an awful place we find ourselves in. I have began to expect the unexpected now. As I was diagnosed last November, and had to have multiple biopsies due to having mixed IDC & ILC. I am 5 weeks post op from LICAP flap surgery, due to size of tumour. Luckily they did get clear margins and nodes. I was completely shocked.
My pathology came back with a rare lobular subtype called pleomorohic lobular carcinoma. I have a ki67 score of 40%. Also have PNI and LVI. With DCIS also. I couldn’t believe the amount that was going on in there.
our minds just run wild don’t they.
I’m sat up now, unable to sleep as tomorrow I get my Oncotype score.
How are you feeling now? It’s such a rollercoaster, I don’t even take it day by day anymore, it’s hour by hour.
So glad we have this forum to speak to people who know exactly how we feel. Wishing you strength.
I too have pleomorphic lobular! It frightened me to death when diagnosed in Oct 25. I had a mastectomy with clear margins and 2 lymph nodes positive. Have had 4 cycles EC and now on week 4 of 12 Paclitaxel. I will have radiotherapy then letrazole, biophosphates and Ribociclib as they have said I have high risk of reoccurrence. I’m hoping as pleomorphic is aggressive the chemo will be effective. I’m less frightened now as I feel they are throwing everything my way. Even though they don’t know much about this rare subtype. Hope you’re doing ok Sx
Are you having chemo? I didn’t have an onco score as they said because it was pleomorphic and I had lymph node involvement I would have chemo anyway. Thinking of you.
It was scary to read about the pleomorphic subtype. My oncotyoe came back with a score of 16, which is the lower end. So I have been referred now to oncology to discuss pro’s and cons.
Definitely radiotherapy, tamoxifen and ribociclin. The ribociclin sounds awful too.
Have you started these treatments yet? Or chemo?
Thankyou for your reply. I hope you’re doing ok. I wasn’t very good yesterday, but until my oncology appointment it’s out of my hands. It’s the fear of the unknown isn’t it x
Thank you for your reply. I think once you get your plan things will seem less scary. I had mastectomy and nodes removed 13th Nov and after the pathology was in a right state after reading all about pleomorphic. Mine was a mix of pleomorphic and classic lobular with PLCIS surrounding 37mm tumour. I got my plan 30th Dec - aggressive dose dense EC fortnightly with dose dense Paclitaxol following on fortnightly. This was because they are treating it as an aggressive grade 3 tumour even though it was grade 2 pleomorphic. I started EC on 7th Jan But my body couldn’t cope with the dose dense EC as Neutrophils were too low. So I had 2 reduced doses with a bigger gap. This frightened me as I was given dose dense for a reason…. Once I finished EC (which was ok tbh, not as bad as o anticipated at all. Just very tired and felt nauseous) I started on weekly pax as they thought the dose dense would be too much again so I’ve had 4 with 8 to go and it has been fine - nothing like EC. But again I worry about the regime being changed and it not attacking the cells as it was meant to - but o has to be safe. If you do have chemo it surely works better for pleomorphic as it behaves like a grade 3 ductal so I’m hoping this is the case. Once I finish chemo I have 3 weeks radiotherapy in 3 different areas and then on to biophosphonates and letrazole then Ribociclib. I’m worried about Ribo but feel lucky I’m being offered this being high risk of reoccurrence- just have to hope these meds aren’t as bad as I read about. I’m 54 with a little baby grandson and need to be here for everyone. Hoping the gear off reoccurrence subsides as the time passes. It’s just hard now being in the middle of it all.
How are you feeling? When is your oncology app? Thinking of you Sxx
It’s so much information. I was just finishing my nursing degree when I was diagnosed. So although all my academic side is complete, I now have hours to make up. Which have been deferred due to treatment. So I look at everything from a medical point of view. My pleomorphic was detected on biopsy as grade 3 too, downgraded after pathology from tumour results.
I haven’t go my oncology appointment yet. I was referred on Thursday. So waiting this. But I have had my appointment through for bone density X-ray.
I should have my oncology appointment in the next couple of weeks according to my consultant. Xx
Yeah so awful how life and outlooks have now been permanently changed. I am much more positive now and I think it is time that does this.
I wonder why both our tumours were downgraded and then mine still treated as grade 3. I remember asking my surgeon what it meant that I had pleomorphic lobular and she just said it’s a subtype. No different treatments-that scares me. Have you done a lot of research into it as I’m scared to? I just think now it is what it is and now I’m on an aggressive treatment path so that’s all I can do. Doing everything I can to best it.
Hope you get your oncology appointment soon. Seems a long time since you were diagnosed. Mine was quick from diagnosis to surgery then chemo. Diagnosed in Oct, mastectomy and lymph node surgery Nov and chemo start of Jan.
Hope you are doing ok and managing with everything going on. My kids are grown up so I cannot imagine having to go through this with a 7 yr old.
I hope you are able to finish your nursing degree. Treatment takes a long time though so don’t rush yourself. This too shall pass.
