I have grade 2 invasive ductal breast cancer. I have 2 cancers, both in the right breast. Both are progesterone and oestrogen receptor positive, but one also has the HER2 protein marker. Because of that I get the entire gold package; surgery, reconstruction, chemo for 6-12 months with hair loss counselling and wig advice, radiation therapy and finally hormone therapy for 5-10 years.
We don't know the stage yet because the second lymph nodes biopsy results are still awaited. I have a breast MRI on Thursday.
I kind of like the 5-10 years part.
Has anyone else had the same?
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Hi, I don’t have the same cancers as you do but I do have stage 4 breast cancer with Mets in my sternum. I had a lumpectomy, reduction and lift after 6 months of weekly chemo and 33 treatments of radiation. Where we might have something in common is that I have immunotherapy every three weeks for the rest of my life. Strictly addressing the immunotherapy it isn’t bad at all. My life expectancy was 5 years when first diagnosed and now almost five years later it’s gone up to 8. I would suggest getting a port if they mention that to you. I hated the idea of it but it really makes things much easier.
The immunotherapy also has much milder side effects there are risks to it like anything else but for me it has literally saved my life and it may just keep me around long enough for them to come up with some new meds. I’ve come to think of the immunotherapy as my time for self care.
The cancer society have some really good programs available “look good feel better “ was my favorite. They show you how to draw on brows in case you lose them and give you some really nice makeup to take home. Also you can google free cancer care packs and they will send you some things you may not have that are really very helpful for chemo. Things like tea for nausea, fluffy socks, blankets. Cancer is hard but there are people who make the hardship a little nicer and remind you there are good people out there. Good luck to you I will be hoping your results are good news!
Thank you for your kind reply. How encouraging about the increased life expectancy. Science is moving so quickly, and with breast cancer research being so well funded, there are amazing advances. I keep telling myself this. 🙂
I've been told I am likely to need herceptin which stops the cancer cells growing and dividing. It is described as a monoclonal antibody. I'm not sure whether that is an immunosuppressant?
I searched for the cancer society and found the American cancer society. I'm in the UK so we have different support, but our Macmillan and Cancer Research are both brilliant. I haven't read through the heap of booklets I've been given yet. I need to do that.
Thank you for the tips on care packs - I crochet so I'm planning on making my own blankets/socks/hats etc. I already ought to have shares in the herbal tea industry - my husband buys ginger tea in bulk now!
Would you mind telling me how the chemo made you feel? I think that's one of the most worrying parts. That, and the fact that I've had reactions to most painkillers other than paracetamol (acetaminophen), which isn't very strong.
I have a similar story. My cancer was in 2 locations, one location it had grown into a tumor about 4cm the other location was in my ducts. My breast surgeon was surprised as she did not expect the second location. The mammogram picked up the tumor but NOT the other cancer. The MRI picked that one up. So after that MRI it was decided that I should get a mastectomy. It was a tough decision because I feared the recovery. I prayed and prayed and luckily my body was able to bounce back. I was back at work after 6 weeks, to give you an indication how quickly I recovered. That’s not to say that I was doing jumping jacks and that it was painful because it was but it was manageable.
After the mastectomy I met with my breast surgeon who told me that my margins were clear, no lymph node involvement. She didn’t think I would need chemo! I went home happy as can be thinking I had put my cancer experience in the rear view mirror. Boy was I wrong 😑 I had to meet with my Oncologist who told me that my oncotype score was too high (41) and I would need chemo. I started crying. Me chemo? That’s when it hit me ‘I’m a cancer patient’. Of course I knew that already but it became real. The outside world world soon know I was a cancer patient. My privacy was officially out the window. My oncologist assured me that chemo was not going to be painful and that all of the negative connotations associated with chemo were not going to apply to me because she shouldn’t let me get sick.
In a way she was right. I did go in expecting the worst. I had 4 rounds and I would say that round 1 was the toughest because you see visually what the chemo is doing to you. I thought I would care about my hair but that was the least of my worries. My nurses put in a neulesta patch and I want to say that was the start of my bone pain. That first week it really shook me to my core. My bones ached so badly. I called the emergency number because I wanted to take Advil or Motrin and wanted their permission (they tell you not to take anything without their permission). They said yes. That was a Monday, I took an Advil and by Thursday I was back to feeling normal.
So for me the chemo itself was not an issue. I think I got nauseous maybe like 2x but they give you anti-nausea medication. I don’t recall getting diarrhea. I did get a slight fever, called the hospital. They checked my vitals and gave me some fluid iv and off the send me (that was round 1 as well).
My hair started to fall uncontrollably by round 2. The sensation of clumps of hair falling was very uncomfortable. Very itchy. I was working through all this so had to get a wig. Oh boy! I could write a book on wigs now. I had to learn fast. Never in my life did I think I would need a wig but I had to put my best face forward so 🤷🏻♀️
By round 4, I did feel run down. Again, I was working (teacher) and I had my daughter who was 3 at the time, single mom also, I did have a lot of help though. This may not be your case. So basically if you have any bad side effects like diarrhea, nausea, headaches, mention it to your oncology team. They should be able to tweak your infusions, change it or adjust it.
Thank you, that is really helpful. Poor you to have to work and care for a tiny through it all. How long did the chemo last? Does 4 rounds mean 4 treatments 3 weeks apart? I’m still learning the terminology.
Yes I got 4 rounds, 3 weeks apart. In my hospital I got the choice of going in on Mondays, Wednesday’s, or Friday’s. I chose Friday’s since I had read that the next day is always the worst. Honestly, for me I found day 2-3 after chemo to be challenging. It was the start of my bones aching🤯 little did I know that that would be a new normal. Again, that was my experience, you may not feel any bone pain. And even with the bone pain I was able to push through and work full-time and take care of my daughter (and yes I did get help from my family).
One more thing about the chemo, the nurses who work at the hospital were such angels. They always tried to cheer me up. On my first day there my nurse saw me crying uncontrollably and calmed me down. She asked me if I wanted an anxiety pill and I wasn’t sure if I should ( I was scared it was going to interfere with my chemo) she told me not to worry that it wouldn’t. Well I was so glad I took that pill because I literally breezed through chemo😄 it was like a spa day for me honestly! I had my tv, my books, the nurses brought me lunch. So the actual ‘infusion’ days were not bad for me.
My chemo days started around 8 and I was there until after 1 or 2, when I was doing the cool caps, I was there longer, probably until 6.
I think what took the longest for me was the fact the nurses couldn’t find my vein. They tried a number of things but it took a good hour to get my veins to cooperate.
Oh one more thing, right before chemo the hospital gives you an orientation about what to expect. What really helped me was a book I got through Amazon called the Chemotherapy Survival guide 3rd edition by Judith McKay and Tamera Schasher. That book was my go to for EVERYTHING that going on with my body during that time. It is written for the average person both of the nurses who wrote that book really make it easy to understand cancer and chemotherapy. Highly recommend. If I could I would share with all of you ladies on here.
I am sorry l am unable to offer any constructive advise at all as l was diagnosed with stage 3 invasive ductal breast cancer 10 days ago and l am only just coming to terms with it and not yet plucked up enough courage to read the package they gave me at the hospital...
My surgery is on the 3rd March..
I do understand though how you are feeling at this present moment...
Big hugs to you, and all the best for the surgery. I suspect we may be going through this together on a very similar timescale. I’ll find out more at my appointment on Thursday.
I’ve been given a library of leaflets and booklets to read. Not much is going in at the moment! I’ll get to it, and so will you. We’ll get through this! X
Absoblinkinlutely. The waiting is awful. It is good to have a plan though. Are you able to keep busy while you’re waiting? You aren’t shielding already? I’m still working and doing grocery shopping and online church, and cleaning and crafting. X
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