Diagnosed 34 er/pr her2 positive with positive lymph nodes

Hello smallandmighty  I was diagnosed with multicentric TNBC high grade cancer but with lymph nodes +ve for her2 also high grade .  
My bone scan took about a week and a half  and it was all clear. It’s hard not to panic but it will be fine.

The hospitals have a cancellation list, you can ask to be added onto it so you can be accommodated if someone cancels their appointment. 

Also I haven’t been offered surgery , I have metastatic lymph nodes all the way up to my collar bone.
I am going to be doing Chemo 6 rounds and then they will look into surgery and radiation.

If there is disease in the lymph nodes, there is possibility it might have spread and chemo first helps to eliminate or reduce that risk of distant spread and as per my doctor the chances of recurrence is higher without chemo. 

Don’t worry be calm and positive it will all work out . 

Hi smallandmighty,

I have grade 2 2cm er/pr postive and her2 negative. I had my lumpectomy and sentinel lymph node removal on 1st October. Unfortunately 3 or the 5 nodes taken came back positive. I took this news so much worse than the diagnosis itself as consultant said its unlikely there would be spread.

I had a CT scan about 5 days after my pathology results on 17th October then a bone scan around 4 days after that. I got my bone scan soon than thought due to the isotope they were using was going to be out of stock very soon and didn't know when they are getting more - due to a shortage.

I haven't had more nodes taken out. I was told that due to my nodes being clinically negative and nodes 4 and 5 were negative I was advised chemo first then radiotherapy. Its hope that 8 rounds of chemo over 16 weeks and radio will help 'mop up' any stray cells. I will then meet with my consultant after chemo to discuss possible clearance but it may be if they don't it isn't full clearance to prevent the side effects.

Now half way through chemo 

Hope this helps.

All the best with your ongoing recovery and treatment. Feel free to get in touch if my experience can help you un anyway even though each experience can be very difference. Sometimes it can help 

Hi da1984

Thanks for your response we sound in a very similar situation execpt I'm her 2 positive. 

I struggled soo much with the fact my nodes weren't clear but they were on the ultrasound. 

Meeting with oncologist this afternoon to discuss my chemotherapy radiotherapy and other things I need.

Still waiting for bone scan which is driving me insane. 

How have you been getting on with chemotherapy? It sounds like I've got to have the same rounds as you so again similar.

I had two tumors 1.4cm and 1.3cm

Hope your doing well thanks again for your message it's really helpful and I really appreciate it best of luck with the rest of chemotherapy and the rest of your treatment. Anything you find helpful for chemotherapy let me know always good to be as prepared as I can be.

Thanks again

Xxx

Thank you for your response I appreciate it. My bone scan seems to be taking forever and I automatically thought I'd be straight back in for a clearance but apparently chemo and radiotherapy do the job of any stray cells. Have you started chemotherapy yet?

Thank you hope your doing well appreciate your response it means alot that people are out there willing to share their own experiences xx

Chemotherapy is going fine, a few side effects as expected

As some other ladies say it's hard but doable!

I started off cold capping for first 3 cycles and having a cannula for infusion. But decided to stop cold capping and got a picc line. You learn during your chemo what works best for you to make youtreatment as easy as possible

Happy to answer any questions you may have  xx

Yes, just started on Jan 14th . on TCHP protocol. It is going okay so far.

Hi smallandmighty 

My diagnosis was ER+ HER- 6cm tumor and suspected 2 lymph nodes involved. I had a single side mastectomy and the surgeon took 6 lymph nodes out. On testing after the op, 2 of these were cancerous, as originally thought. I also read that a lot of people had full lymph node clearance surgery, and asked why they weren't planning to do this with me. I believe there is new research that it doesn't necessarily affect prognosis to take all the lymph nodes out, and avoid it if they can/have the surgical expertise to do so. I think this approach is quite 'new' and was something the trust I am with (who i believe are at the forefront of oncoplastic breast surgery) have started doing as standard. Full axillary lymph node clearance used to be the norm if any were found to be cancerous, but it can cause complications with the arm afterwards so i think they are trying to reduce that risk.

I was also concerned as the tumour was pushing right up against my nipple and skin, both of which the surgeon had planned to preserve and did end up preserving, though he did note '0mm margins' to the skin, which i also queried. Like you, I was also told that chemo and radio would help mop up stray cells. I sometimes feel a bit panicky like I should have insisted more be taken off, but decided to trust in the advice and expertise of my surgeon, and hope for the best!

Lottie

Hi Lottie. 

I am due to have a mastectomy with immediate reconstruction tomorrow - in about 8-9 hours. 
I am petrified to be honest. However reading your post has reassured me. 

I have triple negative so I know this is different but my lump is about 5-6cm (id say!) and pushing right against my nipple and skin. 
I felt so lonely until I read this - I know this sounds rubbish but you’ve helped me massively! 

I’ve had thoughts they’re not gonna operate and all sorts cos of the size and how much it is pushing against. 
I also didn’t think they’d be able to preserve my nipple but who knows! I’m not so fussed about the nipple - just want the beast gone! 

I’ve just been told about the nodes today and the ‘new’ research. I’ve been injected with some dye to light the nodes up. 

Thank you for the read. Good luck with your journey xx

Hi Missy219 

All the best with your surgery today. The internet is full of the worst and scariest stories, so I just wanted to try and provide a bit of reassurance that both mentally and physically my mastectomy and lymph node surgery went way better than I expected, and I am genuinely much happier with the results than I thought I would be. I have an implant reconstruction.

let us know how you get on today, wishing you a healthy recovery from the surgery 

xx

Hi Lottie. I’ve been a bit groggy after surgery but all went ahead.

They have taken my nipple but like I said before. I’m not bothered. There’s bigger things than a nipple. 

They’ve said surgery went well and they’re al very happy with the results. I was down for approx 8 hours. They have used my belly to reconstruct so a bit limited with movement and still in hospital. Hopefully be discharged on Monday. 

Thank you - hope you’re good and recovering well xx