Hi Kaisa,

A very warm welcome to our forum. 

I do not have the same type of cancer as you, but had similar concerns about my treatment in the early stages. I was diagnosed with Grade 1 Pure Mucinous Cancer 12 years ago. I had a lumpectomy followed by Tamoxifen. 

I was assured that my cancer was most unlikely to recur because it was not an aggressive type of cancer. Six months later, I discovered a larger lump in my other breast. My surgeon assured me that this was nothing untoward, but didn't do any scans or biopsies. I refused radiotherapy on the grounds that there was no point in treating one breast whilst ignoring the other.

After 11 months of a Mexican stand-off, I was referred to see the surgeon who was in charge of all the surgeons in my area. He thought that my lump looked suspicious, did a mammogram, CT scan and took some biopsies. Fortunately all was benign. However, almost a year to the date of my first operation, I discovered another lump in my original breast and this time it was a second primary. I had a double mastectomy and changed from Tamoxifen to Letrozole, as the Tamoxifen obviously hadn’t worked for me. I continued to take this for another 6½ years. I had a number of very nasty side-effects to these drugs and, it is hard to say for sure, just how much benefit I have had from them. All I can say is that I am still here and, for that I am grateful.

Cancer treatment is not an exact science and we all react differently to the same treatments. All we can do is to place our faith in our care teams and trust that they will do their best for us. The decision on how to treat us and in what order is not just decided by your consultant, but by a multi-disciplinary team, with many years of training and experience between them.

It is normal to try and shrink some lumps before commencing surgery. Unfortunately, this didn’t work for you, any more than Tamoxifen did for me. It’s a pity that we cannot foretell the future, or then we would have avoided this additional heartache.  There is no point in pondering over ‘what ifs’, as this won’t get you anywhere. However, I’m sure that your team will continue to do their best for you.

I am glad to hear that your surgeon has been supportive. I see that you have now started on Phesgo injections. What is the plan for your surgery now?

I hope that things go better for you from here on. Do please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thankyou for your reply Jolamine,

I am sure the MDT do their utmost to figure out what treatments to prescribe but they do not have a crystal ball (as we wish they did) - I know what works for one may not work for another. I refused the Docetaxel out of fear and my gut feeling - the relief when I said no to the nurse (3 weeks before it was due) was like an anvil being lifted off my head! I had read that metaplastic carcinomas are difficult to treat so that's why I wanted a mastectomy, to me removal should have been the first option. I could discuss what if's for ages but I don't anymore, it won't change things. All the nurses and doctors that I have met have been wonderful and supportive to me, listened and respected me, the mastectomy went well and I don't miss that boob at all. Seroma not great, even after 5 weeks it's still gathering and now a haematoma too - swollen, tender and annoying but not limiting my arm movement (so something's positive!).

For you to have cancer again after a year must have been tough - and then a double mastectomy too.  I hope all has healed well for you. Mexican standoff - such a good expression. I am glad a surgeon finally did listen to you.  Side-effects are the worst side of any treatment we're recieving but if we read the side effects of paracetamol I don't think we'd take it. 

I do wish cancer treatment could be more accurate, but at the same time we are all individuals and what works for one with the exact same cancer may not work for the other. Humans are complicated. Cancers are complicated. 

I wish you well,

Kaisa

Hi again Jolamine,

I've been to the BCN and my seroma requires lymph drainage - massaging in a certain way twice a day, plus I've developed a deep cording that I could not feel.  She explained that the fluid had gelified so no needles would aspirate it and she had seen another lady with the same problem that day too (nice not to be the only one but I pity this lady suffering like I am). I'll just have to accept that this will take time but at least it is treatable and I can already feel an improvement.

On top of everything I am now on antibiotics and steroids for a chest infection - both husbsand and son have a bad cough/cold so it was inevitable I'd get it too. I phoned GP yesterday and no appointments available but once I mentioned chemo they phoned me back and I was seen within an hour! The NHS has been really good to me and we have so much to be thankful for.

Take care, Karin xx

Hi Karin,

I am glad to hear that you have seen your BCN. When you have had this for 5 weeks without any previous drainage, I can appreciate that the fluid has gelified. I am glad to hear that you can already feel an improvement. Are you having to do the massaging yourself, or have you been referred to a Lymphoedema clinic? I have bilateral Lymphoedema in my arms, so attend a clinic for 2 weeks out of every 12.

Having had two operations on my right breast I had terrible cording in that breast. One of the nurses at The Haven practiced manual tissue release, which helped tremendously. She also worked on an old scar which I have from breast to groin, following an open cholecystectomy. This had a lot of keloid scarring and she made a great change there too.

I am glad to hear that the NHS has been good to you and that you are happy with your care team. We are so fortunate to have these facilities at hand, unlike some other countries.

It sounds as if the whole family is having a tough time. I hope that you're soon all back to rights again.

Take care,

Jolamine xx

Hi Jolamine,

I am managing the massages myself, twice a day - where I live there is only one lymphodema nurse and she's very busy but I can be referred to her if needed. The cord is deep but after 3 days of massaging it seems to have loosened a little. I know now this seroma will take time and perseverence but the BCN did alleviate my worries over "worst case scenario"!

Now just battened down the hatches and shutting out the awful storm going on outside!

Hi Karin,

I am delighted to hear that your BCN managed to alleviate your fears.to some extent. We are getting well and truly battered here with the storm too.

Kind regards,

Jolamine xx