Hello & Help - inflammatory bc

Hi @sbee
I’m having a mastectomy and full node clearance. I’ve only had a partial response to chemo my tumour was 8.5 and now 6.8 but my oncologist said it’s what she expected because it’s Her2+. It’s hard to deal with the the thought of losing a breast , I keep getting asked which one is it and really wish they wouldn’t ask because I feel like they’ll compare once I’ve had it done. I know it’s a small price to pay for fighting cancer and I’ll do anything to fight it but psychologically it’s so hard. I’ll have reconstruction next year so hopefully will feel better by then.

You’ll get there we’ll do this together xx

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I was told not to expect a complete response to chemo as well because mine was ER+. I had my surgery nearly 3 weeks ago. The surgeon said they removed all the cancer. My mass wasn’t as big and I had 3 lymph nodes with cancer in. I was really anxious before surgery and was/am definitely grieving. It is strange to get used to along with healing at the same time and having to do the exercises. Now I am worrying because of the wait for radiotherapy. Everyone was happy that the cancer was removed but I am still feeling a bit meh, like when finishing chemo. It’s hard to celebrate each stage when there’s still more to come and trying to process what’s happening.

Thank you both for your replies. I think grief is definitely the word @heya_25. I still just can’t comprehend it. I had hoped chemotherapy had shrunk it more. X

I’m really happy they got all the cancer @heya_25

Hello both - just thought I would check in. How are you both doing? X

Hi @sbee and @sacha.

I’m doing ok thanks. I’ve been feeling really tired the last few days but I think that’s because for the first time since treatment began I’m starting to feel a bit more relaxed. I still have radiotherapy to go. I’ve had the planning scan and will start the second week of August. I’m slowly getting used to the mastectomy which is healing well now. I had a large seroma which needed draining a couple of times.

I’m sorry to see you have been struggling @sbee with having a mastectomy. I really feel for you, it does seem so unfair with no options. Can they do anything to give you more time like (I hate to suggest it) more chemotherapy? Did you see the psychologist and have they been able to help? It’s such a raw deal isn’t it. Sending hugs.

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Hi @heya_25 - I’m so glad to hear you’re doing well & hope you have been resting lots and are being taken care of. I have heard that radiotherapy is pretty easy in comparison to the rest, hoping that is the case.

Yeah - I think i somehow clung on during chemotherapy and was only a week out and then the surgery hit me. I’m absolutely terrified. I know i need to sort myself out somehow, but I’m still on a waiting list for psychological support. (it was meant to help pre surgery but haven’t been able to see anyone yet)

I even asked about chemotherapy, but the team said no. It seems the pathway is set.

Sending :heart:
Xx

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I hope you manage to find a way through and some kind of acceptance :heart:

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Thank you so much. How did you manage the surgery if you don’t mind me asking? X

I was really anxious beforehand, I was pretty much in tears at my pre-op assessment. I knew it needed to be done though and I was worried about the cancer spreading and once I was there everyone was lovely. In a way I felt better afterwards because I was much less anxious. It’s probably easier for me to accept as I’m older than you. I felt good that the cancer was out but still worried about lingering cells and had to push for earlier radiotherapy, I will have to go to a centre further away to get it done sooner. The BCN at my check ups was also lovely, she said she didn’t expect me to look yet and it would come with time. I’m strangely ok with the scar at the moment, I see it as a positive symbol of everything I’ve gone through and managed to overcome.

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Well done - I admire you. How soon was your surgery after chemotherapy ended? I have finally started to feel slightly more human.

It’s not the surgery I’m scared of, I don’t have huge boobs but they definitely aren’t small either. I just can’t get my head around it.

I hope you are healing well and thank you for coming back to me. Finding anyone else with ibc has been hard.

Xx

Surgery was 6 weeks after chemo. To be honest I’ve mostly been anxious about the cancer growing or spreading as it came on so quickly and that was a real push to get it done. I still felt pretty rubbish from the chemo at the time of surgery and I think that was part of my anxiety then that I felt unfit. I feel better now and have my eyebrows, eyelashes and hair growing back. I feel better in myself but very tired the last few days. That could be because I’ve started Anastrazole or because I have a couple of weeks break in treatment and everything is catching up with me. I am still often close to tears if I think about it all too much. :smiling_face_with_three_hearts:

I understand, I think the same often (regarding spread) though I still can’t seem to get myself to terms with surgery.

Chemo is absolutely brutal - I’m 5 weeks out & lost 2 more nails yesterday & despite previously having been fit can hardly get myself up the stairs some evenings. I think I’ve lost my muscles which isn’t helping. I haven’t been to any of my classes etc since diagnosis.

My eyebrows are slowly coming back, eyelashes still are non existent & I actually ache for my old long hair. It genuinely is so so hard.

Thank you so much for getting back to me.
Sending :heart: