Stage 3- recurrent and inoperable

Round2inCobourg · May 2012

Is anyone facing recurrent Stage 3 inoperable and looking at letrozole only, no chemo?

Since my second diagnosis about 3 weeks ago, I've been loving this forum - it's a great help to know we have a community.

My first diagnosis was 1994, mastectomy and tamoxifen. Now I have a tumour in my lymph node on the same side as before, (ER+PR+HER2-)so big and involved with blood vessels and nerves my medical onc says it is inoperable, and she wants to treat it palliatively. I started letrozole and have seen the swelling in the hand on the side with the tumour reduce - very minor side effects (yay!).

My surgeon and radiologist, whom I met with prior to the appointment with my onc, assumed I would have chemo, then (maybe) surgery, then rads. My onc is saying no to chemo - outcome won't be much different, and quality of life will suck. I've asked them to please speak to each other! My onc says she will do chemo if I want - my point is that how the heck am I supposed to make that decision?

In the meantime, I've gotten okay with the idea of letrozole only for the next 6 months at least, so I can start working on my bucket list: summer here in beautiful Northumberland county while my son is at home, riding lessons so I can go on a heavy horse trip in the Lake Country in the UK and then New Zealand to see my daughter.

My next onc appointment is May 30 - decision time! I welcome your thoughts and comments.

Angelfalls · May 2012

When I had an inoperable recurrence, it was treated with rads then a hormonal, but no chemo. That got me to NED for 5 years. I think it's usual to keep the heavy duty chemo back in case of further spread, so there are more options at that stage.

I hope the Letrozole will be tough on the cancer but gentle on you for a loooooooong time. Take care,

Angelfalls xx

sandilee · May 2012

I have stage IV to bone and marrow, and I've never had chemo. Sometimes I wonder, like you, if what I'm getting is strong enough, but I have been stable for 10 months with just hormonals and bone drugs, and I feel well. I guess I should just be glad that I am feeling well and know that I'll have to have chemo somewhere along this journey- just not yet. I think that as long as our body responds to the hormonal meds, the docs prefer that we hold off on the hard stuff. Chemo can play havoc with our blood counts as well as zapping our energy, which, if necessary, we'll deal with. But if we can get away without it yet, why not?

Round2inCobourg · May 2012

Oh Angelfalls and sandilee - thank you thank you thank you! Until I read your posts I had no idea how anxious I have been - now I feel it falling away like shedding my skin. Boy this feels wonderful.

I have an acquantance in a similar situation who has turned me on to naturapathy which she credits for a great CT scan, so I'm off to see a local guy this morning. My dentist and a couple of other people credit him with helping keep them stable - and I'm sure it will help manage stress.

If you think of any questions I should be asking, do let me know. Now, what can I do for you? I'm so grateful for your responses.

DJ64 · June 2012

I have used hormonal therapy for 17+ years. My cancer is in both lungs, lining and ribs. I am at the end of the hormonal therapies and my next ct scan will tell me if I have a reprieve or I begin chemotherapy. I have a slow growing cancer. I only had chemo therapy after the mastectomy in 1994.

My first recurrence was in the axilla and was found 4 1/2 yrs after diagnose and 4 years after using Tamoxifen. I went on Arimidex which gave me years and years. The tumor in the axilla was not a lymph node though I did have a lymph node dissection along with the mastectomy in 1994. I did have positive nodes.

Faslodex at 250 mg (1 shot) Femara and now back on Faslodex at 500 mg. Hormonal is better than chemo if you are ER or PR positive. It is what you need to stop the growth of your cancer.

I hope this helps.

DJ

Round2inCobourg · June 2012

DJ64, thanks for taking the time to write such a hopeful note. I love the idea of getting "years and years".

I saw my onc May 30th, and based on her discussions with my surgeon and radiologist, agreed to continue Femara (I take the generic letrolzole. Side effects were a bit uncomfortable, but I had been through all of them with my first round of menopause (joint pain, weight gain, the weepies).

I am seeing a nautropath, doing the Riordan IVC protocol (intravenous Vitamin C ) with calcium and magnesium because of the potential bone density loss from the letrozole, and a side order of glutathion.

I originally thought that naturopathy/vitamin C was a bit "woo-woo", but I saw that a number of serious clinical trials on intravenous C for reducing side effects of chemo, tumour shrinkage and slowing metasticism are happening, including a major study in Montreal. It has been fabulous for dealing with my stress and sadness - in fact I'm recommending it to all my stressed-out girlfriends even if they don't have cancer!

My next CT scan is July 11 - do let me know when yours is, so I can offer you any help or support I can.

arbojenn · July 2012

Round2, how did your CT scan go? Hope it was a good report!

I love, love, love letrozole! Not the SEs, but the fact it works! With my first recurrence, some of the tumors were just under the skin and I could actally SEE them shrink! Awesome!

Round2inCobourg · July 2012

Hi Arbojenn,

How great to hear from you! I had a good CT Scan, as expected - no mets, and nodes down by half. I'm feeling pretty great, especially since I have officially retired and can spend the summer just relaxing - have taken up horseback riding and am now going to agility training with my border collie, so fun. My son is working here for the summer, so having him around is a bonus.

Big deal of course is not the node reduction, but keeping the inevitable mets at bay for as long as possible. Fingers crossed!

arbojenn · July 2012

Round2, that is great news!

Stage 3- recurrent and inoperable

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