Loco regional recurrent breast cancer in lymph nodes

[Mermaid1971]

Hi Angel eyes,

I'm so very sorry you were not kept informed.

I found out today after my latest mail that the breast cancer has metastasis to the " ocular" part of my eye. 

The lesion on the bone is around 9mm and is putting pressure on my optic nerve, hence recent aching.

I am meeting with my oncologist in the morning to discuss the results and hopefully come up with a plan and get all the information I need to process this.

I just feel like a shell.

Breast cancer diagnosis, surgery, chemo, sepsis, no radio because of covid , then spreading to the lymph nodes in collar bone, rest of affected armpit, base of neck, behind the beast bone and now my right eye. All on right side.

Every meeting is bad news and I would just love a medical professional to throw some positivity my way just once to give me something to grab hold of again  

Thank you for replying, it feels amazing to have someone listen . Sending you much love xxx💖💖💖

[Guest user]

Hello Mermaid, 

Hope you are feeling better. 

I am new to this site but thought I'd drop by and say hello.

I wasn't considered high risk for cancer to come back but it did eight years later in March. No one told me about secondaries and I had no idea what symptoms to look out for with returning cancer 😒. My recurrence was out of the blue. 

Hope your pain is under control. Please do shout out if you need to chat. 

Angel Eyes

[ClaireBear05]

Hey there, so sorry to hear you are going through such a rough time, I hope you are not on your own and have someone close for support. It sounds like I went through a similar experience. As if we aren’t going through enough (just coping with the fact that we might die sooner than we want to) having to deal with pain, especially uncontrolled pain, can get you very down, make you irritable and snappy and just overall feel terrible. Best thing I got on to is the slow release morphine based medication. I’m on MS Contin twice daily, it allegedly gives you a constant small dose over 8-12hrs. In addition to that I also take

 Panadol Osteo: x2 twice daily (especially very good for bone pain)

Pregablin: 75mg am, 150mg pm

Get on to your Drs to sort this out for you ASAP, with a good pain management plan in place, everything will seem a lot clearer, obviously you will feel better and then you can plan better.

i wish you very well, keep exercising, especially walking and take care, cheers, Claire 🌼

[Mermaid1971]

Thankyou Gilly.

I've been on capecitabine a week and a half now a d my lymph node above my collar bone, keeps going up a d down like no ones business.

One minute quite swollen, then my partner says she can feel mainly fluid.

I'm a pretty anxious person anyway that doesnt help!.

Does anyone else on here feel like they have just been given hundreds of meds and then forgotten about?.

I havent had a physical exam since they felt the enlarged lymph node a d feel like I'm just being doped up and left in a corner.

Poor partner in tears alot, she feels like she cant help at all. Even though her just being there is alot in itself.

I have this fear that I will go to sleep and just not wake up. Ridiculous I know, but I feel like I only ever get " half" a story and that they tried to cure me once with the FEC t and now that hasn't worked its try the cape and pray!.

Sorry to be so despondent. I'm normally such a happy person. I just feel like I'm in a tunnel with no outlet at present.

Go to sleep, take meds, eat, shower, sleep repeat. 😞 . 

Sending loads of love to those that need it xxx

[Gillyflower]

Hi Mermaid, just sending hugs as I know how scary everything feels when you change meds.

I also used to panic a lot about pain but now I find I don't as I think I've learned to recognise when pain is from something "serious" and something "less serious", like joint aches.  I think you somehow learn as you go along!

Hope you you find the treatment tolerable and you settle into it so you can relax a bit more xx

[Mermaid1971]

Thankyou Ann.

I guess every pain / sensation / numbness we get it sends us straight to panic mode!.

My temp went to 37.5 this evening but seems to have come back down a bit now.

Although it's only been a week and a half it feels like a month!!. 

Sending you loads of hugs lovely xxx

[Annietre]

Yes I did lots of aches and pains for first fews days.Neck and shoulder were very uncomfortable. Also has a little loss of sensation occassionally , currently have one finger thats a bit numb.

If its too painful for the pain meds you have give your emergency number a call , dont suffer.

Hope you feel better soon and its a sign its working.

Ann

[Mermaid1971]

Hey lovely, 

When you started yourcapcitabine treatment, did you get what felt like alot of tenderness around your glands as well as lymph nodes?.

I'm on oramorph, morphine, chemo, gabapentin but the pain and tenderness feels like its everywhere?.

I still also have no feeling in my right hand as the lymph nodes are pressing on the nerves.

Just want this pain to go away, I feel a absolutely useless xxx

[Annietre]

Hi My lymph nodes were like almonds prior to treatment one , cant feel them now so it feels positive hope the lungs have reacted same. capes been fine very manageable but its only treatment two starting today. Much better than docetaxel and carboplatin and I get to keep my hair 😁 keep in touch we are at a similar point in our journey x

[Annietre]

In for herceptin and perjeta and picking up the capecitabine today. I really felt ok last cycle a bit tired and skin and eyes felt dry but other than that ok - using lots of moisturiser on hands and feet. Hardest bit was the actual swallowing of tablets and having to have breakfast. Good luck Tuesday.

[minniem]

Hi Ann

that is literally the same as my diagnosis apart from I am in lymph nodes too rather Ryan muscles. Oh and I am her2 -ve

I start cape in a fortnight an hope to be able to take it for a long long time

i had bloods done by my oncologist two weeks before that showed nothing irregular, so very strange 

xx

[Mermaid1971]

Thankyou ann for throwing me a positive outlook on this. Yes, I would love to talk with you more as we are all in this together!!. Havent got the right level of pain relief yet so like you said it wears off quite quick. Starting the chemo on tuesday. Nervous after the FECT side effects, but have been assured it's not as hard hitting as FEC T so fingers crossed!! Xxx

[Annietre]

hi ,

SBC in loco regional nodes chest wall and muscles plus right lung. Second round of Capecitabine starts tomorrow plus herceptin and perjeta since Im her 2+ . Was in loads of pain pre first treatment morphine, paractamol oramorph not giving relief for long. After a week of Cape the noticeable swellings on my chest  wall could not be felt , my arm had lymphoedema and was grossly swollen has now shrunk back to nearly it pre cancer comeback size , and the pains just about gone In the day, night time is manageable and doesnt keep me awake any more . Oncologist is really happy with response so fingers crossed Cape works for you and your pain. 

My pain sounds similar to what you are going through and same area of reoccurrence, the week  I started Treatment i was in a very dark place and wanted to just cancel any intervention seeing no point, glad I didnt. Shout if you need to talk x

ann

[Mermaid1971]

Hey guys, I wonder if someone can help or provide some support.

I was diagnosed with grade 3 dcis of right breast.

I had a lumpectomy and level 2 lymph node clearance, followed by another surgery 3 weeks later as they did not get clear margins.

I then had 6 rounds of FECT , but was unable to do radiotherapy that was planned due to COVID.

3 months later my collar bone had s golf ball size swelling so I contacted my oncologist who referred me for a scan.

The scan showed that the cancer had spread to my lymph nodes in my collar bone, behind my breast bone , the base of my neck and the rest of my armpit that wasnt cleared.

I have now got to do 6 to 8 rounds of capecitabine , followed by radiotherapy.

In the meantime I have excruciating pain starting from behind my shoulder blade,  radiating into my elbow, wrist and down my arm.

I have been prescribed oramorph, gabapentin and paracetamol but it all wears off very quickly.

They have put ne under the palliative care team for pain and they hope to start me on chemo in 2 weeks if my enzyme test comes back negative.

I am so very scared, tired from the pain and feel very alone. 

Is there someone out there who has been through the same and can offer me some hope?.

Sorry to ramble on, I just feel at present that I will not be able to fight this next battle xx