Help Needed - Second occurence!

Amal

My mother is 70 years old now, 3 years and 3 months ago she had a left breast mastectomy, to be diagnosed with ILC and 3/13 carcinoma metastases axillary lymph nodes. (Tumor size 6x5x4 cm) Hormone Receptors tested ER strong positive 80-90% - PR negative - HER2 positive. she had completed her chemotherapy and radiotherapy then put on Tamoxifen 20mg.

Later all follow up results showed normal (Tumor markers CEA - CA 15-3 - CA 125, Mammography, Ultrasound focus on liver, uterus, endometrial - MRI - CT scans) and were done on periods from 3 - 6 months max.

3 months ago a scheduled CT scan showed Ascites, enlarged uterus with thick endometrium. CA 125 was elevated to 326. No large ovarian mass was detected. Cervix biopsy tested negative. A monitored (Clinically diagnosed as benign) 3.5x2.5x1.5 mass in the outer lower quadrant of the right breast was removed with a skin tumoral nodule from the upper abdomen, Biopsy showed ILC and Metastatic Deposit. hormone receptors tested ER weak positive PR negative and HER2 negative.

As per several teams of doctors, only palliative treatment is to be applied.

Any advice as we are currently in Syria and needless to explain the situation and the lack of medical expertise! Should she be put on Arimidex as for the breast cancer and its metastase? Is Etoposide the right choice for the unconfirmed ovarian or endometrial cancer?

Any help or advice will be highly appreciated.

The patient's son.

bevin

Hi there, I am so sorry to hear of your Mom. I don't have any input or experience with this but I do know someone will be along soon to chime in and offer guidance and thoughts. My prayers are with you both.

Racy

Hi, like Bevin I don't have the knowledge to answer your question and can only answer based on what I have read on this forum.  

Is it possible that by 'palliative' the doctors meant treatment but not cure? This is the approach that they take if the cancer is stage 4, but I am not sure from your post that the cancer is that stage. Even at stage 4, patients can live for years with treatment, if it works, and there are many treatments available.

It seems to me that the breast cancer should be treatable. I don't have any knowledge about treatments for gynaecological cancers.

I hope you get some helpful replies soon. If not, please post again until you get answers!

Amal

Hi Racy and Bevin, Many thanks for your support.

Yes indeed Racy, two teams of doctors has confirmed during the last two months that her status is no longer curable, according to them no mastectomy (breast case) no excisional, diagnostic nor arthroscopic surgery (for gynecological diagnosis) would be beneficial as they have recognized the right breast ILC to be stage 4 though the pathologist did not mention that in his report saying (stage: inapplicable!) Plus they believe general anesthetic will come with high risks.

They referred me back to the oncologist to discuss palliative action.

There is an enormous lack in expertise and only one gov radiotherapy center that won't probably offer the treatment as being palliative for incurable cases. chemo and hormone is somehow available through neighboring countries. 

She is currently relatively in a good condition (Blood tests results - weight - appetite)  we refuse to give up, I am worried as I noticed metastases increasing inside her abdomen and some other skin nodules in different areas. She is on Arimidex and waiting for the pathologist report on the Ascites to decide what is best as palliative for the gynecological cancer, But I am sure there is more that we can do.

Pessa

Would agree that Arimidex is the right thing to be on.  I have no knowledge of the correct chemotherapy. 

So sorry she is going through all of this.  Is it possible to travel to another country that could have more resources and expertise (and is a little calmer)?

Racy

Amal, hopefully the oncologist can help your mother with active treatment. It is true that surgery is not often recommended for stage 4.

It seems that your mother got very good care and follow up after her initial diagnosis, so I would expect that care for stage 4 patients would also be thorough?

I think the oncologist is the key so please get an appointment asap and let us know how it goes.

Wishing you and your mother the best in this situation.

Amal

Hi and thank you again for your support,

Last week, and after consulting with three different Oncologists, one who has recently came back from Germany made sense.
A cytology study has been made on 3L abdominal ascites fluid, it showed malignancy similar in ER/PR/HER2 expressions to the right breast ILC and its metastases. After a thorough discussion between the Oncologist and the Pathologist based on all the previous diagnoses a conclusion has been made that the major case is the breast ILC stage 4 and the rest of the symptoms are its metastases; the skin nodules and the ascites. there is no clear indication that a separate gynecological cancer exists.
The above conclusion has made the Oncologist decide to proceed with a gentle palliative chemotherapy circle of six sessions, 21 days in between each, applying Endoxan 1g / Methotrexate 100 mg / Fluorouracil 1g and doing the clinical follow up/tumor markers monitoring to assess the response.

Mom had her first session last Thursday, so far side effects are minimal.
The Arimidex has been stopped of course since she started with chemo.

Indeed Racy the Oncologist is the key and unfortunately Pessa travelling isn't a choice at the moment for many reasons, the least is financial.

I really hope we're doing the right thing, Zofran is doing well with regards to nausea but I am starting to have difficulties with mom's appetite, I am also paying extreme attention to the loss in her body mass; fish oil/Omega 3 might be the answer alongside other supplements.

I am crossing my fingers, hopefully we can defend the vital organs (Liver, Lungs, Bones etc..) and limit the metastases.

Again I thank you for your support I wish you a healthy life, I will keep you posted on the developements.

P.S. I have tried to contact Zena Werb, Professor and Vice Chair of the Department of Anatomy in the University of California, San Francisco regarding an interesting research that revealed a Protein (GATA3) that can stop breast cancer from spreading found, but no reply. You can read http://www.deccanherald.com/content/308303/protein-can-stop-breast-cancer.html

Tam, Amal's son

pajim

Hi Tam, I am sorry to hear about your mother and glad the treatment is gentle.  You might check some of the treatment threads for advice on appetite and on eating when she has none.

Whether you do treatment or not is totally up to your Mom.  They call it palliative because once she has Stage iv cancer it is no longer curable.  There are many treatments available.  She will do one until it no longer works, after which they will switch to another one.  Many women do well for many years.

You should inform the doctors and nurses of any side-effects; they can help you by treating them (like providing zofran). 

I wish you and your Mom the very best and a lot of luck.

Amal

Hi Pajim,

Thank you very much for your kind words, and please allow me to wish you in return the very best of luck and happier years to come.

Your observations are really appreciated. 

learningtoletgo

Amal, thank you for sharing the info on GATA3. I am looking forward to hearing more about this in the future.

Amal

You're most welcome, though as you must have noticed these are yet a reseach findings and I am personally waiting for a reply to my email from Prof. Werb.

I will share the response as soon as I get one.

Tam