Struggling after latest post-op news

[jules_2025]

Hi there,

Another new thread from me and this might be a weird one and I totally understand if you think I am absolutely mad and ungrateful after reading this.

Quick background: My mum (64) was diagnosed with highly aggressive HER2+ breast cancer in left breast in September. Within the first scans and checks etc during diagnosis time some of the multiple tumors somehow grew into one “tumor street” as they called it that was about 8cm long. Therefore it was clear she will need a mastecomy and they chose neoadjuvent chemo (18 in total) with antibody therapy before the operation and then followed by radation - that was the plan at least.

The first chemos the check ups were super encouraging and in January we were told the tumor had shrunk to 2 cm. But in February after 12 chemos they told us they have to stop chemo as the tumor was shown to have grown again and therefore needs to be removed asap as chemo no longer effective.

We were in complete and utter shock of course and things went super quickly. Mum had her operation on 25th of Feb (actually chose a double mastecomy) and today we had the post-op check up which also included discussing the pathology/histology of all the tissue and what will happen next.

Because the cancer was so aggressive (grade 3, ki67 70%) and mum didn’t get to finish chemo we were sure there is another chemo to come. But they told us when they checked all the tissue no active cancer cells were found and the sentinel lymph node was clear too. That is the best outcome we could have hoped for and she will not need any chemo anymore. “Only” antibody therapy for 1 year and radiation.

I know I should be over the moon!!! But I am really struggling to understand this rollercoaster journey. We had so many ups and downs. First the GP told us during diagnosis when they got the results before we had the official talk the cancer is not aggressive at all and then the actual doc said the exact opposite. Then we go from cancer is shrinking to cancer is growing to cancer is gone in less than 2 months.

I am super confused. The surgeon said the pathology report is very thorough and probably the most clarity we can get and we may just not know everything. I am very detailed focused in all aspects of my life so this is hell for me.

I wonder if the radiology department somehow misread the tumor and it wasn’t actually growing (mum has super dense breast tissue and several docs have struggled with understanding the images).

I am fully aware that nobody here can give me an answer - probably nobody can.

But I wonder if anyone has tips to share how you cope with this fear of the unknown and different news hitting you. My fear is that something is being missed now or a mistake has been made somewhere and we end up facing a return of the cancer or a spreading of the cancer to other areas and then it is much much worse than before, because we didn’t continue chemo.

I really want to try to trust the experts and just be happy with this hugely positive news, but I am struggling to be honest.

[JoanneN]

I had some unanswered questions in regard to my initial procedure which failed and my BCN arranged for me to speak to a Radiologist which did help me settle things in my head . Holistic Needs Assessment maybe offered post- treatment which is good chance to ask questions as the Health Care Professional conducting it will ask other relevant professionals Dr. Pharmacist etc. to answer queries if they cannot . However as your Mum is the patient rather than yourself she would have to be the one asking for these things which doesn’t help you . I’m not surprised that you’re confused as it has been a real rollercoaster and sometimes the hardest thing to accept about cancer is that you aren’t in control and for someone like yourself who is very organised so used to being in control it must be especially hard . I wish I could help to answer your questions , I feel for you as my Mum who passed away a few years ago suffered with a non- cancerous but progressive condition which affected the treatment of her other medical problems and it was poorly understood .I didn’t fully understand it but I was often having to explain it nevertheless and Mum was often given contrary instructions and in one case prescribed a drug that would have made it worse .

I think that MacMillan may be able to give you some advice and support and it’s a good thing to ask as you may need support at this time as much or more than your Mum. Xx

[Eily]

Hi @jules_2025

First of all never feel apologetic about posting on the forum as much as you want. That is exactly why it’s here.

I can see you and your Mum have been on a bit of a roller coaster journey. The most definitive thing in knowing how a tumour is responding is the histology. All the imaging in the world is just an estimate of what’s happening inside. So I think you should jump for joy and go for that excellent histology report as the gold standard.

When I had an aggressive her+ tumour it seemed to be growing during the neo-adjuvant chemo. I was assured that often it seems bigger because of the aggressive inflammatory response. And yes, dense breast tissue makes it very difficult to interpret mammograms.

My own chemo was cut short (3rounds) because I fainted and broke my humerus so they couldn’t continue. Like your Mum I was lucky and had a complete tumour resolution on histology. I have always been grateful to that fracture for saving me from 3 more rounds of chemo!! I had the year of herceptin and 3 of zolendronic acid, but no further chemo. This was all 7 years ago and I remain tumour free and very well (thank God).

So I wish you and your Mum all the best

Sending hugs

Eily

[mdh]

Hi, I had many ups and downs in my journey, many contradictory pieces of information too. I think you just either accept it or take it further, ask more questions as to why this has worked out this way, or get a second opinion. Have you got a copy of the histology and treatment plan. I do hope you and mum are ok after everything and you get piece of mind

[jules_2025]

Thank you so much for your response Joanne. I really want to speak to the radiologist if I can. A great tip with MacMillan as well. Maybe this is not as uncommon as it seems.

[jules_2025]

Your post is helping me an incredible amount Eily! That it might look different /bigger due inflammation is something that makes sense to me.

And of course hearing you went through this quite some time ago is always amazing to hear!!

Thank you so much

[jules_2025]

Thank you mdh. We have the histology report and I tried to find out more myself (with help of chatgpt) and the messaging was also that the images from radiology may not always be super conclusive.

Regardless we now managed to arrange another meeting with a specialist next week Thursday to get his opinion too as mum had the chemo and operation in separate clinics we get to have more eyes on it now.

Hopefully that will give me piece of mind as well as trying to catch the radiologist since we have to start the radiation process.

[mdh]

I hope it goes well! Just keep on at them until you get answers, my cancer went unreported for 2 years which was confirmed in the histology report, 2 years walking around with cancer not knowing.

[jules_2025]

My god that is crazy!!! I hope you are doing OK!

[JoanneN]

When you are a patient often you hit a place where you are just focussed on getting through your treatment because you don’t have the energy or bad width to spare for anything else . Afterwards when you are recovering and everyone thinks you should be getting over it more doubts and questions creep in . However when you are an invested bystander it’s very different and you are very protective and hyper aware when things don’t make sense . Right now you may be the one who needs that clarity rather than your Mum . She’s lucky to have you though. Xx

[denrob1]

Hi. I’m just post op. Her+. Had chemotherapy before op which shrank tumour then remaining took by lumpectomy. Got the all clear but when referred back to oncology told they want me to have 12 treatments of further chemotherapy, which shouldn’t be as harsh so they said and 5 radiotherapy’ just in case’

This had put doubt in my mind and took the edge off my so called ‘ good news’

I therefore know where you are coming from. I was totally confused!

What began as a 3 month treatment is now 18!

[jules_2025]

I can totally see what you mean. My mum is in a way better at the moment to take things step by step while I am overanalysing and thinking about all the worst case scenarios.

Next appointment is on Thursday with the local clinic where she got the chemo before to discuss treatment plan. It will be a second opinion if they agree with the recommendation from the clinic who did the operation.

[jules_2025]

@denrob1 I am so sorry that you are going through all this in the first place and this mix of news is incredibly frustrating. Really keeping my fingers crossed for you that you get through the next treatments quickly and that they are really not so bad as they say.

[catlover2]

Hi, i am just about to start chemo for her2+. I was told i would have to have an injection for 12 months after chemo & op etc but then when i saw the oncologist he said infusion every 3 weeks for 12months, so Im guessing its going its going be the same thing/similar. I have read other posts and i think it could be Kadcyla. Im about to have docetaxol, carboplatin & the combined herceptin injection is this what you had?x

[linda7]

Hi

As a senior nurse (38yrs) in the nhs I share your frustration.

I was diagnosed 7 years ago with what they thought was a 0.9 cm tumour. After mri they thought it was 2.5cm lobular cancer.

Because of my previous work experience nursing terminal breast cancer pts, including my best friend who chose a ‘lumpectomy’ And who later died of metastatic disease (7yrs) aged 52 , I was adamant I wanted bilateral mastectomies from the outset.

It wasn’t easy, I literally felt I needed to justify my choice and jumped through multiple hoops to finally get my surgeon to agree.

Fast forward to the histology after surgery - the tumour was 5.8cm and the rest of the breast had early disease, which tipped me into stage 3 lobular invasive ca, luckily my nodes were clear.

No regrets. Get rid of the breast, no breast tissue = less chance of reoccurrence.

As a surgical nurse I know they are following algorithms and ‘breast conserving’ surgery research.

Stay strong and fight for mastectomy- if your surgeon won’t do it ask to be referred to someone else.

I know it doesn’t guarantee long-term survival but at least I have it the best chance.

(Had reconstructive surgery- not the woman I was but don’t care about the cosmetics)

[jules_2025]

Wishing you all the very best for this journey @catlover2

My mum had Paclitaxel and Carboplatin, as well as Trastuzumab and Pertuzumab.

Currently the recommendation is to continue with Trastuzumab and Pertuzumab for another year, but we are waiting for the exact plan still.

[jules_2025]

Well done for fighting to get what you feel most comfortable with @linda7

My mum at first wanted the double mascectomy, then was completely discouraged by a doctor, then saw a different one who agreed it would reduce the risk. So she ended up doing the double mascectomy.

I don’t know what it is like with the NHS in such a situation, but in Germany they basically do what you want done - but you have to pay for everything related to “the healthy breast”. That is really tough and luckily mum had savings to do this but it is not easy at all and very sad it is not acceptable to choose this path. Women are generally not asking to have body parts chopped of for fun…

One of the biggest learnings from all this is that the patient and family constantly have to learn, think and fight for their own interest. Not everyone sees you as a human being sadly but more a number in the statistic.

[denrob1]

Hi yes had doxitacel. Then surgery. Told 5 sessions of radiotherapy. No mention of chemo. Yes it is Kadcyla. Hope side effects not as bad as previous chemo. They say not!!

[Tili]

@denrob1 Well done for getting this far with your treatment. I found radiotherapy the easiest part of my treatment, yes I did get very tired, also quite red and sore after 15 rounds, but all very doable.

Wishing you, well with lots of luck going forward. Eat good food, a nice walk when you feel ready will help at lot. Also speak with your team regarding how to look after the breast.

With the biggest hugs Tili

[denrob1]

Thank uou Tili xx