Overwhelmed

[MarsiJay]

Four years ago, when I was eighty-one, |Following the advice of the oncologist, I had six sessions of radiotherapy in weekly doses after a lumpectomy but was considered too old for chemo. Last month, now eighty-five, I discovered that I had metastases on the original breast, malignant flesh tumours and a couple on my head one of which had penetrated the skull. These were all obvious and after having three weeks' treatment with Letrozole most of them have shrunk. The thing that shook me most was hearing that I had metastases in both lungs with fluid on the left. I wonder if anyone has had her lung or lungs 'cured' with oral medication only? A diagnosis of breast cancer in retrospect seemed easier to deal with than this assortment of malignancies. I have an appointment with the oncologist on the 9th of July and am apprehensive as to what to expect.

[Mary115]

I have not had the same experience, but do comprehend aging and health concerns multiplied. I feel for you. This is such a difficult time to deal with everything. I hope you can find the best pain relief and easiest pathway. Palliative Care deals with continual serious illness rather than like Hospice which deals with terminal illness. Perhaps you can receive assistance from a palliative care team which can make this life a bit easier on us..I just feel for and with you, as we make decisions and live life to the loving fullest we can.

[MarsiJay in reply to Mary115]

Bless you Mary for your understanding. I am at the age when one must face the prospect of dying but the process can still cause concern and I am particularly nervous about the lungs. Both my parents died of lung cancer

[Lavern2]

So sorry to hear of your set back. I'm new to this and the doctor started ne on Letrozole 2.5 before sugery. I will be having a Lumpectomey in a few days on the 23rd. I'm just trusting in God that nothing else shows up .I'm worried about my lungs. Do to the fact that after Covid I still have a cough that want leave. But several people I know that had covid say they have a cough. So all I know to do is pray to God for life. You are in my prayers

[MarsiJay in reply to Lavern2]

I hope all will go well with you Laverne. I had nearly four years of good health after my lumpectomy. I didn't take any treatment which may have been a mistake. If I had, I am sure the result would have been different

[Beryl71]

Yes I was diagnosed two years ago with fluid and lung issues as well as widespread bone disease ( that was 26 years after original tumour). I have now been told my lungs are clear and my bones stable after ibrance and letrozole. Good luck. Carolyn

[MarsiJay in reply to Beryl71]

That is a wonderful record. I am only on letrozole at the moment but I feel much heartened by your news. Thank you

[PJBinMI]

I am so very sorry that the cancer metastasized like this! I'm a long timer with metastatic breast cancer (18 years on March 1) and sure understand being over whelmed! Getting this diagnosis is a shock and takes getting used to! I think "you have cancer" are 3 of the scariest words in the English language! Alot of us who have estrogen receptor positive cancer cells are put on Letrozole and when it works, it often works really really well. I got almost three years from it. It takes a bit of time to know if it is going to work, often 3-6 months, and that can be stressful! You might feel more secure about this treatment plan if you see another oncologist for a second opinion, a bc specialist onc, one who sees only people with breast cancer. In the US, the best cancer centers are those that have been designated "Comprehensive Cancer Centers." Those are listed on the website of the National Cancer Institute. Your own onc should be supportive of you getting a second opinion and will probably help you get an appt. I've always gotten one within 2 weeks. Being proactive, as you are by finding this group, can help alot! I suspect that those of us who do things like this prolong our own lives and improve our quality of life. Keep us posted! You will be in m,y thoughts and prayers......

[MarsiJay in reply to PJBinMI]

Many, many thanks for your comprehensive reply describing your lengthy experience. Finding out about the metastases has been a different ball game from my initial diagnosis and treatment. That seemed straightforward. The implications of different areas of malignancy have been a lot to take in and the best teachers are people like yourself who have a great deal of experience. I have only been taking letrozole for just under a month but already the signs are good. I am being treated in the main cancer centre in S. Wales under the NHS and I am not certain how easy it is to arrange second opinions. The service is already stretched because of covid. I was under the same oncologist for the initial breast cancer treatment and so far, she has been more than encouraging and helpful. Thank you for your prayers and you shall be in mine.

[Gingerann1]

Hi Marsijay!My original bc diagnosis was in 2013 with recurrence metastatic in 2020 with fluid in the pleura of my left lung (pleural effusion). They did a procedure called thorocentesis (sp) that drained most of the fluid then I was put on Ibrance and Fulvestrant (shots ) and after 15 mos there was no evidence of metastatic disease so I am in remission. I will stay the course with these two meds until it rears its ugly head somewhere else but these are the two that got rid of the lung mets. Lin

[MarsiJay in reply to Gingerann1]

Thanks for that Gingerann - your story encourages me to hope

[Half-Full]

My wife’s MBC has spread to the lining of her lungs (this does not show on scans but she’s had malignant pleural effusions). Progression occurred on iBrance and Faslodex. After switching to Talzenna her lungs slowly improved. Progression started again after 14 months of Talzenna, and her lungs worsened, but they again largely recovered after a couple cycles of Xeloda.

So yes, oral therapies can be very effective at treating MBC spread to your lungs.

Tumor markers are not reliable for everyone, but they have been for my wife. Considering MBC spread to the lining of the lungs generally does not show up on scans, you may want to talk to your onc about watching your tumor markers. This is a bit of a polarizing topic on these boards and it need not be, everyone is different. They have value for some and perhaps not for others. They have been an incredibly important and accurate diagnostic tool for my wife’s progression and they have likely saved her life.

[MarsiJay in reply to Half-Full]

Thank you for telling me your wife's story. I greatly appreciate it. I am still very much i the dark about markers and such, but I appreciate your advice and your experience

[Hidden]

Hi thereI had metastasis to my lung, pleura and spine with fluid on the lung at diagnosis (3 years ago). I did have the fluid drained by needle. I was started on Letrozole and Ibrance and felt a great deal better, with reduced shortness of breath and pain within 1-2 months.

Nobody mentions my lungs on my follow up scans and say I am stable. I am carrying on as normal.

I hope the Letrozole can do the same for you

Clare

[MarsiJay in reply to Hidden]

Thank you, Clare. The experiences you and other members have shared regarding lung involvement have cheered me up. I am coming up to a month of being treated with Letrozole only and my breathlessness has improved. The obvious tumours in my tissues and skull have shrunk significantly so I am quite optimistic now. I am seeing the oncologist on the 9th July so I shall find out more then. Thanks again for sharing.

[Hidden in reply to MarsiJay]

You are definitely going in the right direction then. Once you are over the initial shock of the diagnosis, and realise this is something you can live with, you can settle back into life again. Took me a good 6 months plus though to get my emotions on an even keel.Good luck for your July appointment

Clare

[MarsiJay in reply to Hidden]

It was a shock indeed and my initial reaction was that the end was near. Reading all the accounts here has made me revise my attitude into how I can live with the situation rather than accept the approach of the grim reaper too soon. Thankyou Bella

[NPmary]

When first diagnosed with metastasis l had pleural effusion (what you might be calling fluid on the lung - it is fluid in the lining of the lung . Also had myocardial effusion - fluid around the heart. Both of these were healed with oral medication (ibrance and letrozole). I also had many small nodules in the jungle and elsewhere that shrunk and were then not a problem.

Maybe someone can go with you to the appt to be a support maybe take notes for you. Try to write your questions down think about what you are willing to put up with in terms of tre a tent. We have a disease they cannot cure - we get to choose if we want treatment t, if we want to stop treatment. Don't be afraid to ask all the questions. Think about what is important to you.

Glad you found us. Let us know how you are doing. Feel free to ask anything here. Wish you the very best.

❤🌺❤

[Dflur]

Immunotherapy, ask about that for your lungs! I have 3 friends, in their 70’s who have had very good response, with very few bad side effects.

[8576]

I am in Canada and have lung mets in both lungs beside the original diagnosis (2013) of left breast and left hip. The hip is inoperable as far as I understand. My left breast was removed with lymph nodes in Jan. 2020 because of growth through the skin. The hip has remained stable also.

Had advancement to both lungs. Nodules which are slow growing.I am currently on Verzenio and Tamoxifen which keeps everything stable.

Hope this helps.

Cheers, June S.

[MarsiJay in reply to 8576]

It certainly does help. I am new to drug names except for Tamoxifen and Letrozole - knowledge is power and I can rai things with my oncologist when I see her next month,

[rubyc1234]

In 2018, fifteen years after my original diagnosis of breast cancer, I was diagnosed with mets in both lungs. I was having trouble breathing and had 7 pathological rib fractures. I was in rough shape and was sure I would die. Well they started me on Xekida and over about the next 8 months I got better and better. After a year and a half of Xeloda they put me on Ibrance and Letrozole. I feel very well today and am into my fifth year with lung mets. They are stable and I have no problems with breathing. I am leading a full life.

[MarsiJay in reply to rubyc1234]

Congratulations - that is such a reassuring story. I now feel that I have a chance to survive do a goodly time.